When You Can’t Get Off Prednisone | Rheumatoid Arthritis Warrior

When You Can’t Get Off Prednisone

water towerWe often hear people talk about how hard it is for them to stop taking prednisone. As a matter of fact, many comments come from people with a new prescription saying how quickly they hope to get off. Others say they’ve taken it for years and they’d like to stop if only they could.

Prednisone can be a type of mask for Rheumatoid Arthritis, hiding what is really underneath. When prednisone works, RA symptoms such as pain, inflammation and fatigue improve. It is obviously a mixed blessing since prednisone can slow bone erosion and help preserve mobility yet it can contribute to the risk of osteoporosis and has numerous other side effects.

What are the reasons a person “can’t get off prednisone”?

There are two explanations:

1) Adrenal insufficiency.

The adrenal glands can quit producing the body’s natural steroid cortisol because of the presence of prednisone. The dose of prednisone is usually tapered gradually so the adrenal glands can begin to supply what the body needs. If the prednisone dose is reduced too quickly, there can be nausea, dizziness, pain, low blood pressure, fatigue, fever, low blood sugar, or loss of appetite. It can become dangerous.

To avoid adrenal insufficiency, people sometimes wean from prednisone by fooling the body with tricks like these:

  • Reducing the dose very gradually over a long period such as 1 mg per week or month.
  • Getting smaller dose pills or breaking pills in half to incrementally reduce the dose.
  • Alternating days with a lower dose or no prednisone.

2) The disease is active.

Reducing prednisone can be like removing a mask. If the disease is still active beyond the mask, then it will be revealed as the mask is removed. If active disease is the reason for symptoms that come when prednisone is decreased, then the tricks of weaning slowly won’t stop them. The less prednisone conceals it, the more RA is revealed.

Does reducing prednisone cause flare?

I’ve heard it said that reducing prednisone provokes flare. I’m not sure whether that’s right. Could reducing prednisone cause RA that is in remission to flare? It’s likely that the symptoms were being controlled by the prednisone and are no longer controlled.

The amount of time it takes to taper off prednisone depends on the length of time a person took it and what the dose was. However, there are also genetic differences. I’ve seen one person follow the exact plan of another person and it doesn’t work the same way.

There may not be anything you can do to make reducing or quitting prednisone easy or possible. What is your experience? I know that others will benefit if you’d like to share.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

125 thoughts on “When You Can’t Get Off Prednisone

  • May 3, 2011 at 7:23 am
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    I will anxiously follow this discussion. It’s right where I am. I was on 8 methotrexate/wk and 10mg prednisone/day when my doctor started tapering me off prednisone, but each small decrease in dosage brought back more and more symptoms. By the time I was down to 3/4 of a 5mg tablet, I needed a walker to get out bed. I’ve been back on 10mg/day for 2 weeks and don’t need a walker any more, but I’m still not where I need to be.

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    • May 7, 2011 at 10:36 am
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      I found it very hard to wean off of prednisone and then my Roomy gave me a DHEA-sulphate blood test. It was discovered I had a DHEA deficiency. I was put on 50* mg a day of DHEA capsules. (I am male, 25 mg is recommended for women). It has made all the difference in the world. Now I am able to taper without getting RA pains. I do however, get the expected weaning off prednisone side effects. (joint pains) They will eventually go away when the weaning is over with.
      *I have to admit that I took 100 sometimes, but only after doing a fair amount of research and learning that Lupus patients have very few side effects taking 200.

      Reply
  • May 3, 2011 at 9:10 am
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    I had so many issues with prednisoone i stopped taking it after a few weeks. gained 45 pounds didnt sleep and had one giant hot flash that lasted weeks. dripping with sweat and being so hot i couldnt handle it. is this normal? and why doesnt it react the same way with others?

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  • May 3, 2011 at 9:17 am
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    I had taken Prednisone for quite a while, seemed my Physician thought that it was best for me. I started to lose bone mass and it was giving me ferocious headaches, so, they decided to taper me off. I was really afraid of a flare, but because they tapered me off, it was manageable. Just make sure they taper you off and don’t just stop taking it. I have to say I
    have more pain now, but the side effects scared me quite a bit.

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  • May 3, 2011 at 9:24 am
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    You know, I haven’t had a permanent prescription for Prenisone, but when I was on the pills, the symptoms were reduced. When that didn’t control the pain, or make me comfortable, the doc gave me a shot. I’m guessing it was Prednisone. The “mask” you spoke of is so true. I cried and was so frustrated when I felt the shot wearing off because it was as if someone dangled keys to the best Mustang made in front of my face, let me get into the driver’s seat then took the keys away.

    Now, I’m basically at a point where I don’t want another shot or any more steroid pills. I am so sorry that other rheum docs don’t think like mine does, in the way of medication. She only uses/used the Prednisone or shot to get the pain/inflamation under control.

    For all those trying to get off, I wish you all the luck and hope it works for you.

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  • May 3, 2011 at 9:26 am
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    Tapering off is definitely the best approach, but you may find you need to bump back up at some point then come back down. I had the hardest time getting off the last 2 mg, then 1 mg and had to stay at those levels longer than decreasing every 2 weeks. Even then, I had to alternate dosage every day (3 mg, 2 mg, 3 mg…) for a period to finally ween me down to the next level.

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  • May 3, 2011 at 9:34 am
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    I was diagnosed five months ago. Weaned off Prednisone in January and was so proud of myself. I was also in denial at that time, thinking that exercise, gluten-free eating and rest would make this all disappear.

    Two weeks ago had a horrible flare and got back on a low dose (5-7 mg a day). Now I don’t feel so bad about being on it because living with the pain was worse. My rheumy says a low dose for the foreseeable future may be what works for me. If it helps me lead a somewhat pain-free existence then so be it.

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  • May 3, 2011 at 9:40 am
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    I have been going back and forth between 30mg and 20mg for the last 3.5 years. I look at myself and I don’t even recognize myself at times. I can’t stand the weight gain of over 35lbs. The main issue is the pred is what gives relief. But my worries now are the implications on my heart. But if we take the prednisone away, I know that my function will be greatly reduced. I am so tired of pills and shots and I have only been doing this for 3.5 years. Any of you who can get off, I am so happy for you!

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  • May 3, 2011 at 9:45 am
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    I have been on a maintenance dose of 15mg of Prednisone since 2002. During flares, I have had to increase doses up to 80mg then taper back to the 15mg.

    It is the drug I love to hate.

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  • May 3, 2011 at 9:54 am
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    Ahhh Pred, the drug we love to hate!!! 😀

    I’ve been on it most of the past 4 years – I finally got off last summer for 2-3 months and felt AWFUL!!! My RA was worse…I went to a new rheumy who put me back on it as it was Christmas and he didn’t want me to suffer during the holidays – well that was 5 months ago and I’ve just started weaning down again myself – I’m at 8 mg (I’ve been on 10 since December) and usually when I go from 8-7 is when my body wreaks havoc – can’t wait for next week! :/

    I did it last year, I’m determined again to get off it and lose the 10 lbs I gained…but it sure is tough!!! I’ve also been told by some rheumies that some people just can’t get off it and continue at very low doses (2-3 mg)…I just want OFF the dang stuff LOL!!!

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  • May 3, 2011 at 10:29 am
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    I’ve been taking 10-15mg prednisone daily for five months now. It has helped somewhat, but I’ve gained more than 20 lbs, which doesn’t help my knees, feet and ankles any. I’m still flaring 2-3 times per month, and each flare can last anywhere from two to ten days; so more often than not, I feel like hell. I know that prednisone is toxic, and it seems to help only intermittently—I would like to get off the steroids completely and try to manage with the mtx alone until insurance approves adding Humira. My lymph nodes are swollen right now and I’ve started having severe neck pain, and new joints throughout my body are now involved. Going to Rheumatologist tomorrow and I intend to talk to her about all of these things. Good grief, I had no idea what I was in store for when I was diagnosed last year.

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    • May 3, 2011 at 2:43 pm
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      Hi Jackie. Good luck at the doc. Do you want to “get off the steroids completely” because of side effects? I just did the math and it seems like your flare is pretty constant. I hope the mtx helps enough to do what you want!

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  • May 3, 2011 at 10:39 am
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    I was on prednisone for two years and tried to get off by tapering down by 1mg a month and I would get down to 5mg and the RA would flare. I then got on methotrexate and I was able to successfully taper down and get off of the prednisone.

    Reply
  • May 3, 2011 at 10:45 am
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    I have been on 7.5 mg daily of prednisone for years now…I am thinking like 8 at the very least. I have tried all the meds except Remicaid and some of the more recent ones but for me I won’t try those until they have been out there for seven years…at the least. All these meds can have potentially horrific and even life threatening side effects and it amazes me what a bad rep prednisone gets compared to alot of these other meds. As with all meds we are damned if we do and damned if we don’t. And for me the possibility of thinning bone, hight blood sugar, weight gain, etc. etc. is about equal to possibility of infections, liver failure, heart failure, bleeding stomachs, cancers, etc. etc. It is a choice we all must make and what may work for one may not work for another. I was glad to read though that it can help with controlling ra from attacking the joints, etc. This is the first I have read this and suspected it to be true. For me (again just a personal experience) all the powerful meds did naught for slowing my aggressive ra…the damage raged on and I couldn’t function at all. At least with the prednisone I can somewhat function. I split my dose….5 in the morning and 2.5 at night. This was the magic bullet. And when I mentioned this to my old ra doc she said that is how our bodies produce cortisol….evenly throughout the day not in one large splurge. I fortunately do not have the moon face and only recently put on a few pounds but I know this is due to my thyroid meds being lowered not due to the prednisone.

    I did taper off early on in my ra as prednisone was used until the other meds kicked in (they never really did kick in…unfortunately) and I had this chart to keep track of as others have mentioned. My doc went with the 10mg, 10mg, 8mg, 10, 10 approach with increasing 8 showing up over weeks of time. It worked and I did get off the prednisone several times.

    For me, prednisone is my ra treatment drug. Alot of recent studies have supported the use of long term prednisone use for ra…just so long as the docs are watching carefully as with all these potent meds.

    Oh yeah…I also didn’t get the severe mood swings I have heard so much about with this med.

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    • May 5, 2011 at 1:53 am
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      I have to agree with murphthesurf. I am currently on 7.5 mg of prednisone daily. I have been on up to 10 mg a day for the past several years. While I have tried most other RA drugs, none ever really helped but rather gave me horrific side effects.

      For myself personally, it is the lesser of the evils. I recently tried Enbrel and was sicker than I had ever been. For 2 months, I could barely walk and the pain was unbearable. Not to mention a myriad of side effects.

      The big gun drugs with the FDA black box warnings scare me. I feel prednisone is a known quantity and the side effects are few compared to anything else I have ever been on. It works well for me and stops a great deal of my pain. Taking 2 or 3 other meds in conjunction with it does not make sense to me and I too am grateful to read the latest research about it. Yes, I wish I did not have to take any drugs but for me this one works with little to no side effects and I am grateful for it.

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  • May 3, 2011 at 11:26 am
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    My situation is similiar to others in that I am at a very low daily dose (5mg/day) and it “masks” about 95% of my symptoms. I tried 4 mg/day and it only covered about 80% of my symptoms. I have to admit – I feel “normal” on 5 mg – no side effects and I actually feel like a regular human being. I have even managed to lose 21 pounds in 11 weeks by eliminating grains and reducing my sugar intake. Even with a daily dose of pred, I’ve been able to lose weight so I certainly considered myself lucky.
    Until 3 weeks ago.
    That’s when the motion sickness, headaches, R sided neck pain, double and blurry vision, and light headedness all started. Now, 3 weeks later – we have a diagnosis: Rheumatoid Vasculitis. The treatment? PREDNISONE AT HIGH DOSES FOR 1-2 MONTHS, then tapered down to a daily dose for 1-2 YEARS (yes, years).
    Don’t get me wrong, I was ready to do something drastic like cut out my own brain to stop those symptoms of the past few weeks but 60 mg of pred/day for 1-2 months is going to be horrible. I get “prednisone psychosis” at 20mg/day so I can’t imagine what 60mg will do for me.
    On the other hand, the RV has severe risks – suddden blindness, stroke, and death just to name a few but as my husband said, “I’d rather you be round like a ball and not blind than blind and slim.” Not a good pair to choose between.
    Best wishes to all – I wish I had better answers.
    Mary Taylor, PT, DPT

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    • May 3, 2011 at 11:39 am
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      Mary, is prednisone the only treatment option they offered you for the RV? I thought methotrexate was the common treatment for that? I don’t know if you take that as well perhaps?

      I so wish the 5 mg pred would have worked for me. I believed in it based on studies that say it can work as long term low dose therapy. Gradually, we stepped it up more and more and it still did nothing. Some side effects, but no help for the RA. My inflammation, swelling, and pain actually increased while on it. I’ve heard from some patients that there is a higher threshold for it.
      So, what I think I’m learning from your post is that since the low dose helps you so much, your body is using it efficiently. That would likely be the reason that the side effects are so bad for you at a higher dose. As opposed to murph who doesn’t have the side effects.

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  • May 3, 2011 at 2:05 pm
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    I was recently diagnosed with RA and was taking 15mg of Prednisone per day for 2 weeks (1/2 a 10mg pill with breakfast, 1- 10mg pill with lunch) and got relief, real relief (ankles, knees, hips, elbows, shoulders and neck all felt wonderful, though stairs were still difficult, but at least I could walk normal again 🙂
    My Rheumatologist wants me on reduced amounts of Prednisone for a month, and also put me on Methotrexate. So far, I’ve only taken one dosage (4- 2.5mg pills once a week) so I cannot comment on Methotrexate yet (my Rheumatologist said it would take approx. 3 weeks to feel significant relief), and Prednisone I’m down to 2.5mg (1/4 pill) with breakfast and 2.5mg with lunch. Some pain has come back, but tolerable if I am going to get relief in a few weeks. My Rheumatologist said the goals are to get significant relief from the Methotrexate and to get me off of Prednisone.

    By the way, THANK YOU for this site!!

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    • May 3, 2011 at 2:38 pm
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      Good luck Paul. That’s how it’s supposed to go for early aggressive treatment. I hope it works out perfectly.

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      • January 22, 2012 at 1:55 am
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        Well, 8 months later, the Methotrexate (10mg a week)& Prednisone (2.5mg/day) seems to have been good for my knees and ankles. When my prednisone was first reduced to 5mg from 15mg, I was in significant pain again and had to jump back up to 10mg/day. The Methotrexate did kick in between 1 and 2 months, and I was able to slowly go down to my current 2.5mg/day of Prednisone. Pain and swelling in my hands has not improved and my Rheumy wants to increase my Methotrexate, but I get way too naucious (I can deal with some nauciousness with 10mg of MTX but cannot deal with 15mg). It’s funny how the issue of pain and swelling in my hands almost seems non-important compared to the improvement in my knees and ankles (gettig in/out of a chair is currently not a struggle and I no longer avoid stairs).

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  • May 3, 2011 at 2:22 pm
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    Hi Kelly – yes, Prednisone at 20 mg lifted me right out of the wheelchair last year, it’s certainly a miracle drug, but with a high cost. I’ve been on it for a year, began tapering a few months ago, but had a flare at 5mg. Doc bumped up the MTX from 20 to 25, and I am beginning to feel a bit better. I have one knee that’s just a-goner, but other than that it’s stiffness and weakness, minimal pain. I gained 10 lbs on Prednisone, and could easily have gained 40 but for tremendous exertion of will to control the insane appetite this drug gave me. Have lost the 10 – not to look better, but to save my joints from bearing the weight. So far, after a couple of weeks on teh increased MTX dosage, I am going to try and taper down. However, my vision has already been impacted by even that small amount of time on prednisone – I can see, but everything is blurry. I can walk and type now – two things I couldn’t do before Prednisone, so I’m grateful.

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    • May 3, 2011 at 7:20 pm
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      Has your doc been notified of this blurry vision. There is a thing called vasculitis…temporal vasculitis and one of its symptoms is blurry vision. Be sure to mention this to your ra doc…just to be on the safe side of course 🙂

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  • May 3, 2011 at 2:37 pm
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    I have six different autoimmune diseases, including a couple that can actually kill you: autoimmune hepatitis and lupus. I began at 40 mg of prednisone per day two and a half years ago, and have been tapering very slowly ever since, until a couple of months ago I managed to get down to 3 mg/day. Then my RA pain suddenly was completely out of control, and my lupus started to flare as well (bouts of extreme photosensitivity that keep my in a dark room with tinted glasses on, malar rashes, etc). I’ve bumped it back up to 5 mg/day, and the pain levels are reduced, but still bad enough to affect my day-to-day activities. I can barely lift or control a coffee mug on a bad day, certainly cannot open a jar. I try to lift my daughter, who weighs less than 30 pounds, and cannot use my hands, I have to help her climb into my lap using my forearms. I may have to bite the bullet and go back up to 10 mg! 🙁

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  • May 3, 2011 at 4:31 pm
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    I take 5 mg of Prednisone every morning and have no intentions of tapering anytime in the near future…I was off and on it for years and had pronounced side effects at higher doses but only a few manageable side effects at this low dose…I combine this with Actemra infusions every 4 weeks and 100mg of Provigil every day to control my disease…This combination of medicine has allowed me to teach this whole school year and lead a fairly normal life during the weekdays…I still do not have any nighttime activities or weekend activities…All I do is rest in order to work again the next week…Fatigue is my number one problem with this disease with pain being second…I do not take the Provigil (too expensive)or the Prednisone on weekends (due to side effects) unless I have an event I MUST attend…I have to work for insurance coverage for me and my husband and to help pay bills so I can not quit work at this point and time…Just wanted to explain the importance of Prenisone in my life right now…Without it I could not continue working or would have to take a higher dose of Provigil which I cannot afford and end up with more side effects at a higher dose…
    Jewell

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    • May 3, 2011 at 6:46 pm
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      Thanks for sharing Jewell. It sounds like you figured out what will make your life possible.

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  • May 3, 2011 at 6:22 pm
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    I have been on 5 mg of pred for 20 years.I was 37 when I was diagnosed.I tried to taper many times when I was younger. One time it took me nine months to get to 2.5 mg ,but ended up with a terrible flare and was back up to 5mg. I have been on every RA med except Rituxin and Cimzia, all with a varied side efects. (some very bad).I would love to take 10 mg a day, but know I can’t because of the side effects.So, I am always interested in others stories. How to get off pred?? I wish I knew.

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    • May 3, 2011 at 6:44 pm
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      Patty, Wow, 20 yrs makes you a veteran. Do you think you stay on it because the RA is too active or because your body is dependent on it because of your adrenal glands?

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  • May 3, 2011 at 6:38 pm
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    Since I started taking prednisone rather young for systemic lupus my doctors have always tried to get me off of it. Early on it was hard because it took a long time to become stable and to know what you yourself can do for flares. the new medications that have come about have helped.there are other drugs out ther even ones to kind of replace prednisone. I think what is important is to ; 1) get a doctor that you can talk to and relate to, 2)understand your disease and how it affects you as a individual,and 3) read and learn all you can to help yourself.People are all different and their disease my act different.

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  • May 3, 2011 at 8:20 pm
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    You need someone to monitor you on this drug, it can have some side effects that can last a life time or put you in a mental hospital. Take it seriously, I’d like to kill the doctor who gave this to my wife.

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  • May 4, 2011 at 12:05 am
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    I’ve been trying to get off prednisone for a couple of years… each time I decrease gradually to 1.5 or 2 mg, the ra seems to flare up and the doseage is increased… and the cycle starts again. Currently back to 5. It is such a love/hate relationship.

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  • May 4, 2011 at 2:11 am
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    Last June I was put on a 20mg maintenance and started a bio along with the mtx. I had a good response and started dropping the pred by 5mg each week. Everything went fine until I went from 5mg to none. I had racking pains up and down my legs. My doc tested my cortisol and it was only a .3 so back to 5mg I went. Since then I slowly weaned down 1mg per month. I had a problem at 3mg and had to go back to 4mg. Then finally I started doing 4mg alternating 3mg and then 3 and 3, 3 and 2, 2 and 2, 2 and 1, 1 and 1, 1 and 1/2, and then I couldn’t go any further. My cortisol level will not stay where it should be and I started getting aches and pains again. I finally decided to just do it for life. I’m tired of fighting it. I’m now at 3mg per day and that keeps me pretty fair with only night time pain.

    I’m considered to have ‘cortisol insufficiency’ which I think may be the same as secondary Addisons. All thanks to prednisone. I doubt I will ever stop taking these for the rest of my life.

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  • May 4, 2011 at 3:53 am
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    Great post and comments! I am struggling with the prednisone myself. I was shocked after I tapered off, to find out how I really feel (the mask). I don’t know what to do anymore, how to make my life better, am so confused. The drugs that help all have such bad side effects to go along with the good, I’m talking about the immediate ones, not long term. How to make my life livable?? The million dollar question.

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  • May 4, 2011 at 12:44 pm
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    I am 26 now and from India.Was diagnosed with Juvenile RA when 17.It got out of control when I was 23 and I was a complete vegetable for more than 10 months which was when my doctor prescribed me 20mg Prednisone daily.I have taken it for 2years continously and in March 2010, my rheumy got concerned with my steroidal intake and started tapering it down: first alternating the dose and then cutting it down by slight amounts–15mg,10mg,5mg, 3mg, 2mg and 1mg. I am finally free from it by Dec 2010. I never thought that I could actually quit taking this steroid because I was so much dependent on it althrough these 2 years. Withdrawal symptoms : Insomnia,anxiety,worse RA flares, fatigue..
    Also , during June; was detected with Adrenal insufficiency and was thought to be suffering from Addison’s disease which fortunately wasn’t the case.The body was masked like mentioned in the blog post and was damn confused, pretty much because of Prednisone. My doc prescribes it ocasionally when in worse pain and all, but I rather live with the pain than get addicted to this drug. Good luck all of you if you are trying to get off from it. It is POSSIBLE but yes, remain determined and strong. It’s one testing field:(

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  • May 4, 2011 at 9:47 pm
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    This is such a timely discussion, as I am also trying to get off Prednisone. I had a terrible flare last September and my Rheumy put me on 15mg per day. It controlled the pain immediately, as I was virtually pain-free for all of October. I have no idea what triggered a new flare in November, that a daily dose of 15mg Pred, 400mg Plaquenil, 12.5mg Amytriptyline and 20mg Mtx weekly cannot control. I took it upon myself to taper off the Pred, since I was only getting the side effects and none of the benefits and was shocked to realize that even 5mg less could cause so much more pain. I gladly returned to the 15mg. I’m seeing my Rheumy in a few days and will not leave her office until she can come up with a plan that will take me off this crazy drug. It’s not doing me any good and I’m barely recognizable to anyone. Good luck to all of you who are trying!

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  • May 5, 2011 at 12:26 am
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    I have been on Prednisone from day one, first at a higher dose to control the flair, then down to 5mg everyday for maintenance. I can’t seem to get lower then that without causing a flair. I would like to try again to wean down and hopefully be able to stop, but time will tell. If I have to stay at 5mg, then so be it

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  • May 5, 2011 at 1:26 am
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    I was one of the unfortunate ones who developed big problems with adrenal insufficiency. I also had iatrogenic (meaning: caused by a drug) Cushing’s syndrome while I was on it and developed the big moon face, fat deposits on my abdomen and on the back of my neck (weird), and purple striations on my thighs and abdomen. I also had a 40-pound weight gain in almost no time. Anyway, the adrenal insufficiency took a very long time to resolve. I had to wean off the prednisone at a very slow pace under the supervision of an endocrinologist, who monitored my AM cortisol and ATCH levels to see if they were recovering. Adrenal insufficiency is quite dangerous – I had to wear a MedicAlert bracelet – and any sort of infection, vomiting, or shock can cause an acute adrenal crisis. I was also so exhausted I could hardly get out of bed. It was an extremely difficult time.

    This doesn’t happen to everyone; I was on a daily dose for a very long time before these symptoms became obvious. I am grateful that I did finally recover; there was some concern that my adrenals might not bounce back. Now I am very careful about my prednisone usage – no more daily dose, and fewer tapers than before. It’s a shame, in a way – it made me feel so good when it wasn’t destroying me!

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    • May 5, 2011 at 5:21 am
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      “Cushing’s syndrome while I was on it and developed the big moon face, fat deposits on my abdomen and on the back of my neck (weird), and purple striations on my thighs and abdomen. I also had a 40-pound weight gain”

      I’m right there with ya. I had all this but rheumy never picked up on it that I’m aware. Never asked me if I had any of this. I’ve had to figure out my own taper schedule. Rheumy didn’t believe in needing to see an Endo to get off of it. Didn’t think I’d have to do a slower taper than every two weeks either. Well, she’s not on the stuff, I am. So I’ve been doing it solo. And VERY VERY slowly.

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  • May 5, 2011 at 7:29 am
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    I found it very hard to wean off of prednisone and then my Roomy gave me a DHEA-sulphate blood test. It was discovered I had a DHEA deficiency. I was put on 50* mg a day of DHEA capsules. (I am male, 25 mg is recommended for women). It has made all the difference in the world. Now I am able to taper without getting RA pains. I do however, get the expected weaning off prednisone side effects. (joint pains) They will eventually go away when the weaning is over with.
    *I have to admit that I took 100 sometimes, but only after doing a fair amount of research and learning that Lupus patients have very few side effects taking 200.

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  • May 5, 2011 at 4:52 pm
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    Katie, what a perfect word picture you painted of the hope and loss that accompanies RA and prednisone use. The mustang keys are a perfect analogy. You think you are in the driver’s seat, in control and bingo you are not. Thank you for this. It gave me a giant cyber hug to know how perfectly someone else understands the issues. I am sorry for both of us dealing with this. But, even in RA, there is an upside. Because of this disease I’ve met some wonderful people and shared heart connections.
    Thanks!
    Phyllis

    Reply
  • May 5, 2011 at 5:38 pm
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    I’ve also been dealing with this issue for over 8 months. My dose has varied from 10-60 mg/day. Although the prednisone has allowed me to function and keep working, the side effects are now becoming much worse than my disease – psoriatic spondylitis. These prednisone side effects have included:

    Severe blurred vision at high doses
    Round, red, full face
    Rapid weight gain
    Buffalo “hump” and fat neck
    Depression at high doses
    Glaucoma
    Early stage cataracts
    Severe fatigue
    Frequent severe hot flashes / sweating
    Thin skin and easy bruising
    Frequent skin abscesses at high dose
    Excess hair growth on face
    Very slow healing
    Difficulty in concentrating
    High white blood cell count
    Increased blood pressure
    Increased blood sugar
    Decreased kidney function
    Frequent hemorrhages in eyes

    Neither methotrexate or Humira has helped my arthritis at all, and so far 6 weeks of Remicade hasn’t helped yet either. Every time I’ve tried to taper down on the prednisone, my symptoms flare badly. At this point, it’s hard to tell which symptoms are caused by the prednisone, trying to taper off the prednisone, or by the disease flaring up. I’m determined to get completely off this medication, but we’ve had to switch to a very slow taper – alternate 9 mg, 8 mg, 9 mg for a week, and 8 mg for a week or two, then 8,7,8,7, etc. Sure hope it works!

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    • May 5, 2011 at 6:02 pm
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      Good luck Debra. That sounds hard wish there were an easy answer. I didn’t realize it was so hard to find something that works for psoriatic spondylitis. Hope you find something.

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  • May 6, 2011 at 5:56 pm
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    I was on prednisone for two years after a life threatening vasculitis flare. Tapering took 10 months. I didn’t find tapering a horrid experience because my rheumy and I found a cocktail of DMARDS that gave me an acceptable quality of life. There are liver risks to taking methotrexate and arava together but the combination gave me incredible relief with no side effects beyond those I experienced with methotrexate alone.

    I would not hesitate to go back on prednisone should I find myself in a similar situation again. The difference it can make very quickly makes it an important piece in my arsenal to fight this ongoing battle with my immune system.

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  • May 8, 2011 at 4:08 pm
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    I was on 10 mg. of pred (with an occasional pred pack) for nearly 10 years. The first time I tried to wean, I tried to do it much too fast. The final time, I did it by .5 mg. per month and it worked very well. Good luck to anyone who is trying to wean! It’s not easy, but it can be done.

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  • May 8, 2011 at 8:26 pm
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    I had quite an experience last year. I had been on a maintenance dose of prednisone for well over a year, which was often increased for flares, pleurisy and breathing problems. A few of my other specialists were unhappy that my rheumatologist had me on it so long, instead of putting me on a biological drug. Last Memorial Day weekend I thought I had the flu and ended up in the ER, with diverticulitis and a very high WBC and infection. I was a very complicated case in the hospital due to the long term prednisone. After a week in the hospital, my colon perforated and I ended up with a colostomy. This was because of prednisone use, which made my tissue unable to heal. Luckily the colostomy was reversed 4 months later, but then I had an incisional hernia, due to healing problems caused by prednisone. Such a viscious circle this drugs puts us in! This past year has been the most painful for me, not being able to take prednisone anymore (and quite a bit of an ouchy stomach too, after 3 surgeries!) But, I am thankful to be alive. Just be careful, friends!

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  • May 9, 2011 at 3:46 pm
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    I am trying the staggered dose approach now and it is going great so far. I am going between 2.5 mg and 1.25. You would think such a small dose would not matter, but it does. My body goes bonkers if I just stop it suddenly. I was on a 5mg maintenance dose initially.

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  • May 10, 2011 at 2:37 am
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    I too, like some others, have just been diagnosed with RA. Was on Pred for about 1 1/2 months after dealing with some very weird chest spasms (all started about Jan 1, 2011). Numerous tests, then a huge flare of hand and wrist swelling and joint tenderness, my first. My PCP rx’d prednisone at 60mg-40mg-30mg then after about 1 month, at 20mg. After a referral to one Rheum doc who avoided diagnosing me with RA because the markers were not there, I self referred to UCSF Medical Center, Rheumatology Clinic in San Francisco. After a 45 min consultation, the specialist said,”the top Dx on my list is RA” ran more tests, then started me on MTX 2 weeks ago. Each time I see a new doc, they want me on the lowest dose of pred possible, which is 5mg, and I can take that for about 5 days before the symptoms come back hard and I have to go back to 10 or 15mg. At 10, I can manage, but have some symptoms. At 15, I feel pretty good. Almost no side effects to speak of. Actually lost a couple lbs since cutting out almost all alcohol because of starting MTX. Talked to the new rheum doc and she wants me on 10 of the pred. Hope I can stay there for her until the MXT kicks in. If not, as long as my side effects of the pred are mild, I don’t mind being on 15.

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  • May 12, 2011 at 12:43 am
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    Kelly (and others), I too, have been in a love/hate relationship for over 20 years. Dxd at age 8, the Pred. was one of the first drugs prescribed. And it has lasted. Over the years, you can see the dosage of Prednisone and disease activity increase in pictures as my cheeks grew along with the dosage. Throughout high school I suffered from sleep problems and severe depression. Thinking it was simply life (adolescence), it wasn’t unitl my 20s that I learned the side effects of Prednisone. I am stuck on it still. Because of 20+ years on steroids, my body does not produce the natural cortisol but more so, my disease is still active. However, my bones are now much like those crystal tubes they built the houses with in Fraggle Rock…they are brittle. I have broken ribs simply by leaning over the washing machine and another major break could land me in a wheelchair forever. Yet, biologics are too expensive and only have a 50/50 chance of working. The thing I hate most is the weight gain…it is pure vanity but the true reason I want off the Pred. is to have my cheekbones back, but then again, if I can’t get out of bed, what good do cheekbones do me?

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    • January 10, 2013 at 2:20 am
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      Can you tell me what you did to get off steroids
      Taking 60mg a day
      Desperate

      Reply
  • May 23, 2011 at 1:15 pm
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    This is where I live! Among other Meds (MTX, Plaquenil ETC) I have been on 60 mg of Prednisone for over 2 years. I dislike the side effects so (poor sleep, increased weight, drenching sweats)that I have tried to taper off but one or two days at anything less than 50 mg and I’m so stiff and swollen I’m even less functional than usual.I’d be grateful for any advice that can be offered. “No people will tamely surrender their liberties, nor can any be easily subdued, when knowledge is diffusd and virtue is preservd. On the contrary, when people are universally ignorant, and debauchd in their manners, they will sink under their own weight without the aid of foreign Invaders.” –Samuel Adams,

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  • May 23, 2011 at 3:08 pm
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    Hi,
    Right off hand, I would say that if you are unable to taper off prednisone, (and I hope you have tried a number of different methods of doing it, seems like there are no 2 doctors that have the same tapering off method)then you need to try a different DMARD drug, such as Simponi or Orencia. Once one of those drugs has begun to work, then you will have a much easier time tapering off prednisone.
    Hope this helps.
    Pat

    Reply
  • May 31, 2011 at 2:24 am
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    I was on prednisone for 5 years and weaned off without any problems. So happy to be off 🙂 No side effects due to taking siberian ginseng, heaps of multi B’s, C & fish oil: supporting my adrenals. No autoimmune issues now! I daily take ginsengs, echinacea (doesnt work for O blood group)
    krill oil, antioxidants. Stretching, exercise & massage factor in sublime health. Following an alkali diet is the key to removing joint pain!!
    BLESS ALL WHO SEEK THE TRUTH:)

    Reply
  • July 2, 2011 at 12:58 pm
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    Here’s an interesting article regarding the fact that they did not track prednisone usage/effect very well during all those trials for the new biological drugs:

    http://www.medscape.com/viewarticle/744190?src=rss
    “In summary, the study conducted by André et al.[1] showed that most reports on the efficacy and safety of biologic agents in patients with RA provided inadequate information on concomitant prednisone therapy. This lack of reporting of prednisone use has consequences for the interpretation of the original studies themselves as well as being a confounding factor in existing meta-analyses. In order to assess the efficacy and safety of biologic agents in an unbiased manner it should be mandatory for all future studies to provide information on whether the patients enrolled receive any concomitant glucocorticoid treatment and if they do, detailed information regarding the medication (duration; dosage and change of dosage or other modifications) should be reported.”

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  • July 2, 2011 at 1:34 pm
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    I can sympathize with everyone here who has used prednisone for years to just get through the day enough to be able to work so you could keep your insurance. I’ve been that way since I was first diagnosed.

    I am down to 1/2mg of prednisone after what has been over a year long taper. Heck probably a two or three year taper, but longer than that if you go back to my highest, “long term” dose – of only 20 mgs. I have lost about 43 lbs from my highest weight while on pred. I have lost the moon face. Buffalo hump is slower in coming down. Belly still there, just not quite as big. Still have stretch marks everywhere, thighs, butt, hips, tummy, chest, upper arms. No pregnancy to blame any of those on!

    If you have a hard time with the withdrawal symptoms – either of the joint pain/stiffness/fatigue/malaise type, or of the adrenal insufficiency type with nausea and other dangerous symptoms, that you go taper extremely slowly and by very small increments. Try only cutting the dose every month, or if still bad, only every two or three months. And only cut it by 1 mg, or even 1/2mg at a time – especially once you get to doses lower than 10mg or 7.5mg or for sure under 5mg.

    Yes, some of us are extremely sensitive to prednisone, even at small doses, and all of us in somewhat different ways. I wish I knew what to tell folks like Kelly who are resistant to it. Perhaps try some of the other glucocortoids? Though you have to be very, very careful with the fluorinated ones.

    Prednisone has allowed me to continue to work and not be bed or wheelchair bound. But after being on it for 13 years, I need to get off, so I can avoid bad long term effects like very painful osteoperosis, or other more dangerous complications of long term use, and so I can heal after joint surgery. I have to keep reminding myself of this.

    My rheumy just moved out of state unfortunately. But she did finally hit on a dmard combination that is helping me get off the last of the prednisone. I wish she’d convinced me to try adding the plaquenil to my methotrexate years earlier. I had mistakenly thought it could cause macular degeneration (no, but can cause another serious eye disorder, so probably should not take it more than 7 years). Adding plaquenil helped quite a bit. She explained it helps the methotrexate work better. I guess it does. But tapering down on my prednisone is allowing some flaring still, so on our last visit, she got bold and said increase the oral methotrexate from 20 to 25mgs (still oral) – but split the dose and take half the mtx on Mondays and half the mtx on Fridays. I was a little shocked as at previous visits she didn’t want to increase the mtx again for some reason. Also in past she’d said that any dose over 20mgs of mtx should be done by injection so it gets better absorbed.

    Well, this worked so well, I’ve gone without my splints for a few weeks so far, for the first time in forever. However, I’ve sped up my own prednisone taper, and am having some more flare again, but not too bad yet. I was/am anxious to try to get off of it before seeing new rheumy and getting new blood tests. I have had a spreading, annular rash of some sort on my knees and elbows for about 5 weeks that isn’t improving with anything I’ve tried so far. I am hoping it is not from the plaquenil or altered mtx dosing. Wondering if the prednisone tapering has brought it on. I want to get off the prednisone (and my usual antihistamines) so we can see what blood tests show or don’t show, since both prednisone and antihistamines will affect the results. Also want to see what the liver enzymes and kidney function indicators look like. If I can only get through the nightly itch fests until then! May have to try lots of ice packs or cool towels.

    Reply
    • July 5, 2011 at 6:48 pm
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      Hi Chelsea. Have you noticed a handful of folks around who say they need 20, 30, or even 50 mg before the pred helps them? They can do this because their RA “flares” and is not ever present so they go off it again when it calms down. I’m willing to try 20 if I can get a doc who will, but knowing it’s long term treatment (no breaks in disease activity for 5+ yrs) makes it a more weighty decision. Side effect-wise that is.

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  • July 13, 2011 at 6:25 pm
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    I can’t believe rheumies are prescribing steriods as the only method of treatment. My rheumy refuses to go there an placed m on a dmard and biologic immediately. I manage my ra very well this way.

    Reply
  • August 30, 2011 at 7:13 pm
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    I’ve been trying to get off the prednisone myself the past couple months. My doc advised me to go down 1 mg/day per week. I was starting at 5 mg/day. I went from 5 to 4 mg/day with no problem. From 4 to 3 mg/day the mask was coming off. I had more pain and stiffness, but it was still bearable. I also started to have visible swelling in the knees and PIP joints. From 3 to 2 mg/day, the mask was off and I was in agony. After a couple days of this I broke down and called the doc. He told me to go back to 5 mg/day. So I did. It was amazing. My symptoms were much improved over night. I was truly in awe of the power of prednisone that 3 little milligrams would have such an effect. I was doing great for a couple days and then sneaky RA really crept up on me. A few days later I was back in agony and a few more days I broke down again and called the doc. This time he said go up to 10 mg/day (5 mg morning and night) for a few days then go back down to 5 mg/day with a stop over at 7.5 mg/day.

    So here I stay at 5 mg/day waiting for my first biologic to work its way through insurance pre-approval limbo. I’m just hoping the biologic does the trick for me and will allow me to get off the pain meds, the prednisone and the daily NSAIDS. I dare to dream and hope it will work, but if nothing else it is a chance of better disease control.

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    • August 31, 2011 at 1:44 am
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      Good luck getting approval AND eventually getting off the pred. I had a hard time getting off too. Had to do it by one month tapers and go by half of 1mg tabs and do it over a year or so to finally get off. Been off a bit over a month. The increase in stiffness had been incredible and some increase morning/early afternoon swelling.

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    • September 2, 2011 at 10:52 pm
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      I certainly hope so too!

      And the prednisone helps people at different levels – some can get help at the very low dose of 5 or less. Much less than what was once believed necessary. But some require 20 mg to have an effect. Some have commented that even higher doses are needed for them. The differing genetics or disease types don’t play fair w/ either the pred or the biologics.

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  • August 31, 2011 at 8:46 am
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    I just stumbled upon this post and cannot believe how accurate is, for me. I have been struggling to get off of Prednisone for more than a year. I did the 3 day wean, five day, 3 month and currently have been on alternating doses for about 3 months now. Nothing has worked. I “crash” every time. They even tried switching me to Hydrocortosone thinking there is an adrenal issue. While the switch addressed some heat intolerance issues (I couldn’t even take a shower without extreme fatigue/near passing out), I still cannot come down. I am currently down past my “trigger zone” (where my body starts the crashing process from weaning), but it is a struggle. My rheumatologist tells me my RA is “calm” right now. I don’t think he understands. Pull those steroids…there will be a storm!

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    • September 2, 2011 at 10:43 pm
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      yes, calm RA with steroids is not the calm in reality that we need – I agree.

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  • December 7, 2011 at 7:53 am
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    Prednisone saved my life when the RA got so painful in the beginning. It is a blessing to me. I don’t worry about the side effects when the pain is so bad from this disease
    destroying my body. For the past 30 years I have been on some kind of dose of Pred.
    I read in the New Eng. Journal of Medicine a few years ago that a low dose was safe.
    I agree. I like to try to stay down at 5 mg and when there is a flare then go up temporarily. Other drugs for RA have had much worse side effects for me. I love my Prednisone.

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    • December 7, 2011 at 8:39 am
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      Hi Bon, you’re right that a lot of people, maybe even a majority use it long-term – probably because it works better than anything else to reduce inflammation in most people. There are several other prednisone articles here, and one is about the long-term low-dose therapy like you use at 5 mg here: http://www.rawarrior.com/low-dose-prednisone-in-early-rheumatoid-arthritis/
      It’s great that you can get benefit at that low dose and only go up for flares temporarily! It’s not the side effects I worry about “destroying my body,” it’s the RA itself. That is supposed to be the purpose of the DMARD medicines altough they often don’t help the symptoms really – – – so people take prednisone!

      Reply
  • May 11, 2012 at 10:59 am
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    I was recently diagnosed with RA, and fortunately my internist expedited an appointment with a rheumatologist. She put me on 4 5-mg tablets a day for a week, then 3, then 2 as directed – the idea was quick relief while I started methotrexate. After a day and a half, I felt so much better, and by the end of the week, I felt almost normal. Now after one day of the decreased dose (3 5-mg tablets), I’m remembering what bad shape I was in a week ago. It’s amazing the effect a little pill has (and lack of). Her idea is that it’s short term. I’m going back on May 24 and will find out how short term then. Sometimes I think some medications are “addictive” because we are “addicted” to living without pain . . .

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    • May 11, 2012 at 12:23 pm
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      Hi Diane,
      I’m glad the pred gave you quick relief – it does for many people (I wish everyone!). Many do rely on it long-term since it’s the only thing that brings relief. It’s hard to argue with being able to function – especially when you’ve experienced how bad RA can be & what relief means.
      I hope the methotrexate works well for you & you won’t need the pred any more. Good luck!

      Reply
  • May 11, 2012 at 8:54 pm
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    I have had RA for about 30 years and been on Prednisone most of that time in different amounts. A few years ago I read in the New Eng. Journal of Medicine that they found that a low dose, 5 mg, of Prednisone was not harmful. I thought that was good news for me anyway. I have been helped more by this drug than any other. Have been on every drug from gold,anti-inflammatorily, Methotrexate, Humera, and lately for the last 5 years Rituxan infusions. Prednisone is the only thing that has really helped me along with pain meds. without too many side effects. I have pretty severe RA with deformed hands and such. I get so tired that I can do maybe 1 thing a day like shopping or church and that is it. People don’t understand but that is all. I need to come home and rest. Fatigue and depression are what it is along with pain, but the pain would be much worse without the Prednisone. I love Prednisone and am not stressed about taking it because it gives me a more comfortable life.

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    • May 11, 2012 at 9:45 pm
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      Thank you very much for sharing, Bon. I’m glad it works so well for you.

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  • May 12, 2012 at 12:39 am
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    Thanks to Bon and Diane for your comments on this thread. I have moderate to severe RA, I’ve been on Prednisone since ’02, usually 5mg a day. Right now I am on 15mg for 3 more days, then down to 10 for 5 days, and so on. I had a hip replacement in February. My Rituxan cycle and Methotrexate schedule were interrupted by the surgery and I was miserable with fatigue, pain (NOT the surgical pain) and lack of energy. I am going to physical therapy several times a week and need to do strength building exercises to be able to walk without a walker. But I was so tired I could hardly stand up straight. Prednisone to the rescue. Almost immediately after I started with the 15mg doses I got some strength and energy and was able to do my strength training routine. I love Prednisone. Like Diane, I am addicted to living without pain. Like Bon I have a more comfortable life. Kelly, I have not kept up with you or the RAWarrior website. I just got out of the loop. But I had asked to be notified if there were comments on this subject, so I got noticed about Diane and Bon. Thankfully this got me back to your website. Last I knew you had started Rituxan. I hope and pray that it has helped you as much as it has helped me. Next to Prednisone, it’s my favorite.
    Thanks all for a place to share. I so appreciate it.
    Phyllis

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    • May 12, 2012 at 11:32 pm
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      I love Prednisone too. I also hate it. I did fine for years on 5 mg, usually with another med (Enbrel for many years). Then when I had problems with multiple other meds, I was only on Prednisone. Without it I couldn’t have functioned. But I had to increase to 10, then 15 mg, and have been finding it impossible to taper. I’m not aiming for stopping it, just getting back to lower dose. After being on higher doses for several years, I have had many of the major and minor side effects/adverse effects including cataracts in both eyes, osteoporosis and recent painful compression fracture, incredibly fragile skin, poor wound healing, palpitations, many others. I still consider it a miracle drug, and I am fairly convinced from reviewing literature that 5 mg may be helpful and not too harmful, but from my reading and experience, try to keep any higher dosing to as short a time as possible.

      Reply
  • June 22, 2012 at 8:21 pm
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    Hi,
    I was having an infusion of Orencia yesterday and talking to a women who had been on Remicaid for years and never had a side effect.
    I have been a RN for many years and of course every drug has horrible side effects for the very few. I am just suggesting perhaps if you try Remicaid or Orencia you might find that nothing at all happens and you feel better.
    Drugs that just control the symptoms don’t stop the bone damage.
    This is my experience and I have been diagnosed for 5 years with RA.

    Reply
  • December 2, 2012 at 1:12 pm
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    Thank you all for sharing. I’m from Mauritius. I have been on prednisone for 15 years and methotrexate 8 per week. I was 32 when i was diagnosed with RA. Right now i am taking 5mg one day and the other day 2.5mg, what i can say i don’t feel well at all, i am in such a pain, loss of appetite. The doc says that my body is dependent because of my adrenal glands. I’m interested to know how to get off prednisone. Since 2 months i’m on Evening Primrose Oil and the ESR is 14, less inflammatory, but i do still have pain. Help me if you can please. Thank you so much for the site.

    Reply

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