When You Can’t Get Off Prednisone
We 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
- Prednisone Dosage for Rheumatoid Arthritis
- Prednisone Side Effects
- Low-dose Prednisone in Early Rheumatoid Arthritis
I see by your location that you are quite isolated from the mainland. I do not know if all medications are accessible where you are. It would seem to me that the main way to get off of prednisone would first be to get on one of the “biologic” drugs. I am on my 3rd one now. I have had RA for 16 years now. I was on Humira (which I strongly recommend) for 6 years and it was great, but like many medications, it finally lost its power for me. They told me that 6 years is pretty good for a biologic to last. I then went on Orencia for about a year and a half. It only partially worked so I finally gave up on it. I have just recently started a new one called Simponi. Soon I will start tapering off prednisone as I have done in the past. That is what you need to do after the biologic drug starts to take hold. Get the biologic drug to start working then very slowly taper off the prednisone. I do hope however, that you have some financial assistance such as insurance, because any of these biologic drugs are very expensive. Good Luck to you and God Bless You……….Patrick
Thank you so much Patrick, yes i’m on an island in the Indian Ocean. Unfortunately some of the medications you mentioned we do not have it here,i know they are very expensive and the insurance does not cover chronic disease. Ive been on plaquenil at the beginning then salazopirine and now methotrexate. I called my rheumy today and she told me to go back on 5mg prednisone. Thanks. God bless you too
I have had issues with my joints for years. In my early 20s the doctor thought I had lupus. That was later overturned. Now in my early 30s they say I have RA. I have a completely destroyed elbow. They started me on Prednisone 10 mg. Then it was 20mg and then my rheumy added Methotrexate. During the summer I tried to come off prednisone and had a bad flare in my feet. He upped it to 40mg and ordered me to taper down slowly. At 10mg he added Plaquenil and I have been in a flare ever since. I can’t seem to get off of Prednisone. Any ideas?
Hi Renee, ive a destroyed elbow too. I tried not too increase prednisone, but having anti inflammatory drug such as diclofenac or paracetamol. I read an article about wearing heel copper in shoes. I will try this and see what happened. Take care.
The interaction of secondary adrenal insuffiency caused by steroid use and RA can be difficult to manage. I have AI and RA and now use the equivalent of 10.5 mg of prednisone daily. When my RA flares or when I experience any additional physical stress, I require more prednisone. The problem is anticipating my need for steroids. My endocrinologist believes that I will not be able to taper off prednisone, and I’m inclined to agree. But I try to manage my steroid use to keep it to a minimum. Determining that amount is difficult because it’s a moving target that moves with my RA. Since the RA is not static, my steroid use isn’t static, despite my use of plaquenil and Arava. I am usually one step behind RA and AI changes, so I’m always trying to adjust after the fact.
I would be very interested to know whether any of your other readers has found a good way to manage with RA, AI, and steroid use.
Thanks,
Thank you all for your posts. I am currently in the tapering off phase myself. A misinformed doctor put me on 20 mg a day with no plan to wean me off. The side effects are awful! I have wide-spread swelling, (legs, feet, hands, face)my face is breaking out like crazy and the headaches are awful. I’m now down to 14 mg a day and I see no difference. My goal is to get down to 5 mg a day. the mask you speak of is SO true. The prednisone relieved my pain better than anything else I tried. but the side effects are just not worth it. I hope that my pain doesn’t come back like it was before, but right now, I’m willing to risk it.
I have a question: Has anyone on prendisone had surgery? My hubby needs surgery for knee replacement, however doctors don’t like to operate on him due to the fact he is on prendisone and could very easily get infection and loose his leg entirely. Also he just found out he has prostrate cancer as well. Suppose he needs surgery? He can’t get off the prendisone. He is at 15 …whenever he tapers down past 10 he can’t walk or move and swells up. What do we do?
Priscilla, even though it is usually recommended to stop any immunosuppressant before surgery, people on long-term prednisone sometimes do have surgery. Have his doctors discussed with him at least reducing the dose, like you said down to 10 or 8, just before the surgery? I know he would be uncomfortable, but he won’t be walking much anyway for a couple days, and he could up his dose again soon. If he’s in a lot of pain, pain meds could be prescribed. I’d ask the doctors straight out what his options are because I’ve known others on long-term prednisone who had major surgery. It would be an additional caution for his doctors, but I would ask if that infection risk could be carefully managed.
Priscilla,
I have been on prednisone for 31 years and I’ve had multiple surgeries since then. I’m not able to come off of my prednisone because of adrenal insufficiency, so I have always been on it before, during, and after surgeries. In fact, they give me IV steroids during surgery because of the added stress on my body. I’ve never had problems with infection post-surgery. I have to come off of other meds pre- and post-surgery–NSAIDs, methotrexate, biologics–to reduce risk of bleeding and infection. But, it’s never been an issue with my prednisone. Best of luck to your husband!
Dear Barbara,
thank you so much for taking time to share your experience and ease others concerns.
Some of us who are adrenally insufficient are not able to stop taking prednisone. If II require surgery, the amount of glucocorticoids must be increased substantially to deal wiith the stress. In addition, the interactions among RA, adrenal insufficiency, and prednisone use are sufficiently complicated that it is difficult to make any generalizations about prednisone use other than 1/ prednisone is required for us to survive, and 2/ prednisone has some highly undesirable side effects that we need to try to manage.
thank you Harry. I’m sure Priscilla’s husband will appreciate your words.
Hi all,
I’ve been receiving the newsletter and following the forums here for awhile but this is my first post. I’m so thankful to have found this helpful resource and supportive community.
I have RA and have been on varying dosages of prednisone since my diagnosis a year ago. I’m currently tapering off (hopefully) prednisone, with a schedule of reducing 1mg per month, now that I’m at 5mg per day. I’m having some reaction to my lower dose now, especially joint pain, fatigue, and headache. I am hoping, like so many others, to get off this once and for all, but am worried about the increased joint pain. The hope is that the Arava I’ve been taking for the past three months has kicked in sufficiently to allow me to discontinue prednisone (I also take 12.5mg methotrexate per week). Does anyone have any self-care suggestions for coping while tapering off? I had a massage last week, which was heavenly, but not sure how often I can swing this. Any advice would be appreciated. Thanks, and good wishes to all.
Wow, i am off for 4 days after 3 yrs. I did my last month on 1/2 mg! My rheumy said look for 2 wks to a month of aches & pains. Since i have gone off, i have a different “ra lite joint” each day. Since i am retired, i can do a sedentary lfestyle during this period of “withdrawal”. Hot tub, rest, light diet, attempt low stress ( i had a very close family member die on my 2nd day off…), gentle exercise, tylenol – we’ll see. I am determined to stay off – i lost a needed 25 lbs during my weaning months. I can say that on 1/2 mg for one month, i had no pains! Now on zero, its a whole different story. This group of postings is so timely. Lots of luck to you.
Thanks, Cecilia. I’m inspired by your story – especially your weight loss and that you are now OFF prednisone! Good for you! I hope you continue to feel well. (And I’m sorry for your loss.)
Take care,
Leslie
Well, i have had 2 really hard days of flareups -prednisone withdrawals. So i stayed in bed and rested thoroughly. I suddenly felt better and now we’ll see – as they say – “it ain’t over till the fat lady sings” haha!
I forgot to mention that i am on orencia and methotrexate. The prednisone was supposed to ease me into their effectiveness. I have to keep the faith. I will give it a month…..
You may want to talk with your Dr about the possibility of increasing your methotrexate, depending on your labs and other tolerance of it. That may help. Also, some people need to taper their prednisone very slowly, and in 1 mg increments. Perhaps you could go back up to 6 mg a day, and try a 1 mg decrease every two or three weeks, depending on what your Dr thinks is best. Good luck!
That’s a good idea Kay. Increased joint pain means the disease is likely not controlled by the DMARD dose, but masked by the prednisone.
I’ve even heard of breaking pills and reducing by 1/2 mg. Or alternating doses every other day on the way down. I hope Jay comments too – I think that’s part of his method that has helped many.
The prednisone has to be weaned and the side effects mimic ra (ra lite). It is the long term low dosages that apparently cause the side effects the worst. I am in that boat right now. Give it a month if you can tolerate it. Then see if the meds you are already on kick in by themselves. I know that i am through with prednisone. I feel like a junkie!
My pills are 5 mg, and when Enbrel seemed to work so well, the rheumy and I agreed to try to cut back on the prednisone. I went from 10mg to 7.5 and now down to 5mg. I feel like crap! Pain in my left shoulder, elbow, wrist and hand, and I am exhausted. I hate to go back up to 7.5, but think that might be my only choice right now. I see him next month, will have to ask him about 1mg pills or how I can get it in smaller increments, maybe that’s the trick? Prednisone is the only thing that has really helped me since this started in August 2012.
Karla, as I suggested in the post (https://www.rawarrior.com/when-you-cant-get-off-prednisone/), I’d be concerned that your disease is still active and you’re noticing it more when the symptoms aren’t suppressed by the prednisone. I’m glad you’re seeing the doc soon so you can talk to him about it.
I thought I’d share my partial solution for those of you with terrible foot pain. Despite numerous surgeries and the things that most of us have tried, the only thing that helps my feet is to wear custom made, soft diabetic full shoe orthotics. I go to a lab that makes molds of my feet and shapes the shoe inserts out of several layers of different cushioning materials. I could not walk without them at all. Yes you have to wear them with clunky shoes and yes I pay out of pocket $250+ but they keep me on my feet when everything else has failed.
I had the same issue, after being on Arava for 3 months my Rheumatologist started to taper me off the prednisone. The lowest I was able to go was 5mg before the soreness and fatigue started to creep in at this point my doc decided to just continue with prednisone as part of my treatment. He wouldn’t even consider moving me on to a biologic. I was reluctant to continue on the prednisone as a long term part of my treatment so I asked my primary care doc if she could find me a different Rheumatologist. My new Rheumatologist agreed that the disease was not under control and that one of our goals of treatment would be to get me off the prednisone. She started me on Humira and I am now on my second dose and I have discovered that even though I felt better on Arava and prednisone that the disease was not being controlled very well. I didn’t know this because I have been so sick for so long I did not have any idea anymore as to what I felt like before i got RA. One week after I started Humira I realized that the daily discomfort I had was starting to fade, to make a long story short even though I felt better on the Arava and prednisone i was still a long way from having the disease under control and I did not realize this until I could not wean off the prednisone and I was being treated with Humira. I think it’s very hard when you have been sick to remember what you felt like before so it’s easy to settle for less pain as a substitute for having the disease under control. I agree whole heartily with Kelly, the symptoms are probably better controlled with the Arava and prednisone but the disease is far from under control. I am glad that after all the reading I did on this forum I was knowledgeable enough to pursue a different treatment plan. Thanks Kelly for all that you do!
Two meds that help me handle the pain are Cymbalta and Xanex. I do see a psych for those. I take .25 Xanex and 30 mg Cynbata twice daily. Push your rheumy to try a different biological. My rheumy doesn’t do system Prednisone anymore. He injects locally. How about a long dose pack to get you off the daily use? Prednisone is NOT a treatment for disease, only for symptoms. The adverse systemic side effects are not pretty. Keeping joints warm and range of motion every day help me, as does prayer and walking. Best wishes for your journey,
This information is so good. I was told by my prior RA doc to stop all of my medication, including prednisone, about last February. I was not having relief from any medications and she thought that the pain was from neuropathy. Well, little did I know, you are not supposed to stop prednisone suddenly, especially after being on it for almost 3 years. I ended up in the hospital once for passing out because my blood pressure dropped so low and another time because it was so low and I was having chest pain. I had no energy at all, always felt faint and light headed and could barely get out of bed. The hospital never checked my cortisol levels until the last hospital stay suggested I have it done. Why they didn’t do it then I don’t know. They suggested I see an endocrinologist. Well, I have adrenal failure and now am steroid dependent. I have to take cortef every day and the endo is trying to see if my adrenal glands will regain function on their own. This could take up to a year and she cannot guarantee they will re-function. The thing about being steroid dependent is that if I ever have to have surgery, am seriously injured or ill and have to be hospitalized I have to have large IV doses of steroids and glucose or I could die. I was very angry that the prior RA doc did not wean me off slowly and explain the repercussions of staying on prednisone for so long. I have read about other people being taken off of prednisone suddenly and talking about feeling ill. I hope this helps educate others about the dangers of stopping prednisone and not tapering off, and how important it is to have cortisol levels checked.
what a foolish doctor. I’m glad you’re “okay” Jackie.
I was shocked that ur doctor didn’t taper u off slowly. I’m also scared because they always seem to use prednisone for me as a fix all. I’ve been on it more than off for the last 2 years. I’m having trouble gettin off the final 5 mg as well. I was told to taper slowly but ur post was interesting and I think I’m going to make them check my cortisol levels too. Thanks for your post.
OMG is this relevant. I have been *managed* by pred for the past three years — 15mg daily — despite trying all biologics. Finishing Actemra now and moving to the last choice, rituxan. I am still swollen and miserable a good deal of the time despite high pred, so tapering isn’t an option for one working full time. How do people ever get off this stuff?
I am one of those who love my prednisone. I don’t know what I would do without it. I have to admit I don’t take it daily as prescribed. I worked out a “schedule” with my doctor and I take it as I feel I need it, up to 10mg/day. If I ever need more, I let her know. I’m very lucky, because the only side effect I have had thus far has been being hot. For me, taking prednisone means I can sleep, I can eat, and I can do some of my ADL’s. I have never had a hard time getting off of it. I have taken much larger doses during hard times. (up to 60mg/day). I understand that it does mask the symptoms, but around 1/2 of the RA meds do the same thing imo. If you ever have a hard time getting off the medication, regardless of what it is, slow the taper down. And understand that you will have physical symptoms whenever you go down to the next lower dose. It sucks. Having a doctor that is willing to work with you to do it at the level best for you is the best thing. Good luck!
Thanks for all of these helpful posts. I had been on Prednisone for almost 8 years—between 2 and 15 milligrams at any given time. I’m also on injected Methotrexate and monthly infusions of Orencia. In the past year and a half, I’ve worked on slowly losing weight and have lost 55 pounds—30 of which I had gained since being diagnosed with RA. Over the course of the last year and a half, I’ve been able to reduce my meds as my weight has decreased and as of today, I have been totally off Prednisone for a month. I did as others have described here–reduced by .5 milligrams each month. I had several periods when I had to increase it due to flares, but then I just started over. I’m feeling hopeful that I’ve made the transition now!
I do want to say that I think losing weight has very positively impacted my experience of RA symptoms. My feet and knees are so much better now. I am much more likely to want to exercise—and I do—and this has also led to me feeling much better. I felt so out of control of my body, deciding to really work on sensibly losing weight was an almost desperate move to feel some sense of ability to control at least some feature of my physical self. Interestingly, although I was truly 50 pounds overweight for my height, my doctors had never suggested that I try losing weight. I have talked with them about this–as they have been very happy with my weight losss–and have asked them why they never recommended this step to me. Both my family practice and and rheumatologist doctors said that they are reluctant to have this discussion with patients–that it’s really hard to lose weight and they don’t want people to feel discouraged. Honestly, I’m not sure that it actually would have helped to have a doc tell me to try losing weight–but I thought it was really interesting, given the positive outcomes I’ve experienced, that this wouldn’t be a regular part of interactions with RA patients. Just thought I’d share this aspect of my experience. Thanks for reading!
i guess i am in for a big suprise..been on prednisone since august, weaning off now and i am so not ready to face the pain again…i have baour six days left. arg
Please don’t expect the worst based on this post Andrea – this post was especially about those having a hard time with it – many don’t. 🙂
Yes kelly! never expect the worst! keep positive. follow your instincts!
I’m 42 and recently found this site – thanks for having it! My first flare, and RA diagnosis, came on after my 2nd baby was born in 2007. I was able to do 3 short-ish courses of pred (20 for a week, 10 for a week, 5 for a week, a month off, repeat), and then stay off it with no more flare. Until last Fall. My last baby was born in June of 2013 and the flare started about September. I’ve been on pred since October of 2013 (25mg). Started trying to wean off it a few months ago, per rheum. Was at 20 for a month, then 15 for a month (not too bad), then 10 for a month (not too good), then came 7.5. That just about made me feel like a crazy person. RA started “traveling”. Wrists very bad one day, followed by ankles, one knee, both shoulders, upper spine… I started supplementing with ibuprofen once or twice a day, to take the edge off the pain. It was getting me through the days. Until it wasn’t. The step from 7.5 to 5 was horrible. Ibuprofen 4 times a day, just to barely function. The step from 5 to 4 almost did me in completely. Ibuprofen around the clock, 400mg 6 times a day, and still had to ask my husband to stay home from work for a couple of days because I couldn’t take care of the kids/house/myself. It was/is humiliating. A call to my rheum’s office was returned via secretary – 48 hours later(!) – telling me my rheum “strongly disagrees with me continuing pred, and I MAY take 5mg/day until next appt (7/7).” Sorry, not good enough. Gave myself a short burst of 5 days on 20, with a plan to continue on 15 until I see her, then wean off much, much more slowly – like .5/month slowly. I was reading that the adrenals can take a year or more to slowly start producing the equivalent of 5 to 10mg a day. I probably used to function at the high end of that, since we had a couple very stressful things go down in 2012 (miscarriage, son diagnosed with T1D). Am so very, very tired of the pain, but happy the 20 allows me to function somewhat like myself again, if only for a short time. Anyway, glad to have found this place, where people understand what it’s like to not be able to pull a blanket up over your own shoulder, or the ever-entertaining roll-to-get-up-off-the-floor. Thanks, Kelly!
Hello! I found this article (and the related comments) particularly interesting, as I have struggled with my own Prednisone-based love/hate relationship for years. I was diagnosed with RA at 18 months of age. Through the years, I have suffered a number of flares, but I was blessed with fairly long periods of remission. The latest remission lasted 6 years. However, my remission quickly ended when I fell on the sidewalk and split open the skin on my right knee (where my RA has always been worse). Three months later, I was prescribed 15 mg Prednisone/day. I had the typical symptoms – hot flashes, poor sleeping, headaches, “moon face”, and irritability. But, within a couple of weeks, my knee felt normal. No pain, swelling or stiffness. Fast forward 8 months later, and I am on 1-2 mg Prednisone/day. However, every time I try to go off the Prednisone, my symptoms return. The last time I tried (only a couple of weeks ago), my knee swelled up in only a matter of days. Even on 2 mg/day I can experience swelling if I engage in too much physical activity. My doctor is convinced that I am just suffering from withdrawal, but the swelling and pain is real when I reduce my dosage. I’m feeling frustrated since he wants me off the Prednisone and on Methotrexate. My side effects with Methotrexate are far worse that with low doses of Prednisone (serious hair loss and stomach upset), but he doesn’t seem open to my concerns. Initially I thought I should just find a new doctor. Any thoughts out there? I’m also curious if anyone out there has had experience with lower doses and at one point their Prednisone side effects began disappearing? I still have my moon face, even on 1 mg/day. I also have excessive facial hair and acne to deal with. I’m learning that it’s the lesser of two evils, however. Any advice is greatly appreciated!
Hi,
I was diagnosed with rheumatoid arthritis in March 2015, I was doing better with methotrexate, plaquenil and prednisone. Initially prednisone was 20 mg for 1 month and I managed to take prednisone 5mg every other day. Since June was being reduced 1mg every 2 weeks, I am off prednisone now for 2 weeks and for the past 2-3 days not feeling well at all, along with 3 of my joints. I am on naproxen 500 mg twice per day. I am trying to cope with the “flare”, I wondering if I should go back on prednisone 1 mg or wait it out another week.
Thanks!
My Acute Adult Onset Asthma,( 19 years ), has recently been re-evaluated as COPD. The five or six times I’ve been prescribed Prednisone, it has worked wonders. My current flare up has really gotten hold of me. The Albuterol Sulfate helps, as does the Symbicort, Spiriva and Montelukast, but still experience flare ups that literally take me to the floor. Does not happen on prednisone. All the coverage of an extended use of Prednisone and its side affects are quite alarming and down right frightening. Is anyone out there on a low dose regiment for a long period of time without the major side effects: Is there an alternate dosage or other medication. The condition taking me down is the extremely heavy green mucos that sticks to the sink when discharged. Would appreciate any feedback on this. Thank-you TDD
I am very scared. I have been on more prednisone for longer than anyone I have read about online. All for rheumatoid arthritis. I can’t get off of it. I am a different person than I was a year ago. I try to cut down but I get EXTREMELY depressed, everything get ugly, and I can sleep 22 hours a day. I work full time, and always take time off to try and reduce, but can only cut down for 3 to 4 days max, before I have to bump back up. 60mg, more than a year now. I’m lying to my doctor.
hi Steve, I’m so sorry, it sounds awful & I know it is.
I do know people with RD who have been on prednisone for decades, so it does happen. I have had people mention doses like yours also – not ideal obviously – but just to tell you that you are not the only one.
I hope you can talk to your doctor or find a doctor that you can talk to.
Of course if you could find a dmard that worked, the pred could be reduced & that would be a good goal. I’ve had a problem finding one the past 10 yrs.
Are you thinking that being sleepy is a side effect of the pred? Usually fatigue is a side effect of RD, and pred tends to make one more awake.
hope this helps some
I started on 35 mg at first and it was a blessing cause my inflammation was so bad,,but my doctor just kept reducing it little by little,,he wanted to get me down to one a day but we tried that and my inflammation came back full blown,,so loks like i have to stay on 10 mg,,bit i am sure he will try to reduce it again later,,,says its the worst pill i am taking because it causes so many problems,,my doctor is pretty good and is really looking out for me,,i do take met and humira shots too,,plus he gave me loucover for side effects of the medication
I was diagnosed at 40 and did the biologic triangle hitting it hard with Remicade, Humira, methotrexate… They all stopped working like everything else in my 15 year RD journey. I was on a maintenance dosage of prednisone 5mg. When I would flare I would up it 10 to 20 mg then do a reduction back to 5mg as maintenance. I needed more to maintain, eventually taking 15mg daily for about 5 years. At some point I was unable to manage or distinguish the RD, onset of menopause and the prednisone symptoms and side effects. Not to mention…. I Iost Myself.
My Dr gave me a 1 year reduction plan. She said I would feel worse before better. It took me 2 years. It did get worse and it was very hard. It has been a year since my last 1mg dose.
My life is different, I FEEL my RD every, every day. Some days all I do is lay flat, not move because even my hair hurts. Would I trade it back? No. It’s like you said, it’s just removing a Mask. It was always there. But the Prednisone caused Many more issues than what I have now… I’m calm, even keel, some days are bright And others are shades of grey. But that’s ok for now. I have learned so much here. Your blog posts and comments educate me to make a better more informed choice for my health in the future.
I too had severe psychiatric manifestations from prednisone, so they added a tiny bit of a drug called lamictal, and it fixed it.
Thank you for all of your sharing. I was diagnosed in January, but I knew it long before. My daughter has dealt with RD since she was three, so I pretty much knew. I was given shots and then prednisone bursts, which helped tremendously. I was so happy that I could get out of bed in the morning, feed the cat and pick up my coffee cup. Now I am weaning off the prednisone and my wrists, elbows and knees are so swollen I feel I can barely move. I was on a great food plan before and had lost 20 lbs. I have gained it back and low dose prednisone (10mg every other day)is not working. My RD doc has prescribed methotrexate. I am scared to take it. I am at a point where the pain is so overwhelming that the very idea of getting into the shower is tough.
I remember the days way back when, when my scrip would expire before I’d take it all. Now, the RA is so active, I can’t get off. I weaned off last month, and within a week I started having low grade fever every day. Went back on the pred. (10 mg every morning) and the fever immediately stopped. Now that I have RA Lung too, well, I just think that diagnosis back in November was the RA-game-changer for me. Fortunately I have always responded well to the DMARDS and meds, so I’m not as bad off as others, I thank God for that. But like most, its good days and bad days, even with the meds. I hate prednisone, I’ve gained 30 pounds in 6 months since the RA Lung diagnosis. it is what it is I guess.
I have a Kidney condition called Gloumerulnephritis (Minimal Change Disease), I’ve been taking Prednisone since February,1992(24 years). My Kidneys can’t function any longer without Prednisone, so I’m diagnosed as Steroid Dependent. I eat, exercise, and try to keep a healthy mind. Last year, I was so excited because, I got down to 5mg and eventually got myself off the Prednisone within days my bones were severely aching, I couldn’t walk, sleep and always in pain. Three months later, I had a reoccurence, so I got back on Prednisone to 30mg per day and weened myself down to 10mg per day. I lost hope!!!! I must now accept the lessor of two evils. Any suggestions or miracles?
I was on 5 mg for 5 years. Tapered down to 3 mg last year by going down 1 mg per month. Finally got to 1 mg but my joint swelling increased so had to go back to 3 mg. I now take low dose Naltrexone and an adrenal supplement and by reducing the pred 1 mg over 7 wks (1st week Monday take 2 mg then 3 mg the rest of the week, 2nd week take 2 mg Monday and Tuesday, then 3 mg the rest of the week and continue for 7 weeks to go down 1 mg!). This has worked for me and I am now off pred for 6 weeks. All OK for now. Hope this helps.
I have been on prednisone for 14 myths methotrexate for 7 mths never felt so sore and so bad pain
Funny. How many 100’s of replies and not one about getting off everything by simply changing your diet and putting RA behind you! And the beloved prednisone!!
I’ve been on prednisone for 10 years through 2 pregnancies and my rheumatologist wants me down and off (I’m now 46yo with borderline osteopenia and easy bruising luckily no other complications); i’ve got to 6mg a day from 7.5mg a day and my hands and knee have flared a bit. Also on a biologic, methotrexate, and other pain relief. I cant work out whether i should plough on and tolerate the pain and bit of a flare (which has been quite well controlled for 7 years now so is a real shock) or take the risk of more bone thinning etc..
I am 27 years old and have been diagnosed with autoimmune hemolytic anemia a little over a year ago. I have been on prednisone ever since. Even though it makes me feel great I am noticing a significance in weight gain almost 60 pounds and my body is retaining water. I am hospitalized every 4-6 weeks due to flare ups of Aiha. Every time I taper down to 20-30 mg (starting from 60mg) I have a flare up and a week in the hospital it is, along with a couple units of rbc’s.
I did 3 or 4 high burst packs. The last one, I weaned very slowly and never used it again in 2009. With my existing cardiac conditions I was deathly fearful of Satan’s TickTacks. It worked well for me. I took my MTX faithfully through thick and thin for 4 1/2 years. I also went on a diet and lifestyle inflammation reduction campaign and, it’s worked for me. Drug-free remission since August of 2014.
It often makes me wonder if my original diagnosis was correct.
I will try to post a more detailed story of my RA later. But for now I will say that in 2014 I got hit with 4 extreme things at once, lost 80 lbs dying in bed, freezing one minute, sweating like a pig the next, till I looked like a survivor of Auschwitz from WWII. I had off the charts RA factor (they have not been able to measure mine for 4 years), Run away hyperthyroidism, a bronchitis hard dry cough from hell, 24/7, and I could not stand up or sit up, or cut my food with a fork and knife, and I was taking max doses of ibuprofen for pain to help me sleep.
Prednisone saved my life. Turned out a virus attacked my thyroid, it swoll up and started dumping excess hormones into my body that burned up all the fat and muscle in my body in 12 weeks. The immune system, RA was attacking the entire body, thyroid, muscles you name it.
The next battle was getting off the prednisone and building back my fat and muscle. I finally found the right combination of OTC vitamins, herbal supplements and right doses, and foods, but one huge key to getting off the prednisone was boosting the adrenal glands production of natural prednisone (cortisol).
There is a great book or two out there on it and its connection to fatigue, stress, getting off prednisone and yes RA!!! Some of the key things I did was start eating bad foods, like ground beef to boost my fat intake. In turns out that the Adrenal gland needs cholesterol from animal fat to make natural prednisone (Cortisol).
I added DHEA and Prenenolone to help the Adrenal gland make more natural cortisol with the added cholesterol in my diet. The Adrenal gland makes DHEA and Pregnenalone, but as we age we make less of it. Taking the supplements allows the adrenal gland to focus on making more cortisol, the natural, safe version of Prednisone.
I also take massive doses of Vit A, some C, 5-LOX Inhibitor with ApresFlex, and SOD (Sulf-Oxide Dismutase).
Google life extension dot com and get their encyclopedia and use the index to go over what supplements work for what problems, like RA, huge doses of B-5, B-12, and B-6 for instance, and call their MDs for free supplement advise (The advise and book is free to members that join for a year). It is the most significant text I have found.
I have a lot more of the story to share, but let me say that the last 12 months I have had weeks where I was down to 1 mg/day of prednisone (several days at ZERO) and I was back to doing my hobby of using vibrating air impact wrenches and auto tools on my old collectors vehicles that would probably ruin the hands and joints of most people fighting RA, and send them screaming in pain from just thinking about it. The battle for me continues, it never ends, but from 2014-to Jan 2017 I spent many days afraid I was going to live, LOL.
Oh, and I have taken ZERO pain killers, nothing but Prednisone as far as pain killers and Rx drugs go for the RA in 4 years now. In 2014 every muscle and joint in my body was on fire.
Feel free to post up questions on the details of what I am using, how much, when I take what, and why. I was started at 40 mg Prednisnone /day in 2014, took months just to get down to 30 mg….
I also have a lot of other insights, into what not to take and to do, that I want to share and explain my reasoning. Lastly I am now convinced that my RA started back 40 years ago, and I just never knew what it was. I controlled it for 40 years with just live style, diet and mega vitamins. I will post that story next time.
One of the things I have used that has helped me is adding LOTS of collagen to my diet. I mix it with my morning oatmeal cereal. You may know it as gelatin. There are several types. The Bovine(cow) gelatin fixed my skin problems, including easy bruising, getting cut and bleeding way too easy, and skin rashes, etc, that the Prednisone, HT, and RA caused. This one below is one I have tried and am using again. The one I used for my repairing my skin and joints is Kosher Hydrolysate Collagen.
https://images-na.ssl-images-amazon.com/images/I/51tiQRtkikL._AC_US200_.jpg
Here is the science behind the second one, Type II un-denatured Collagen, it is well worth reading!!!!
http://www.lifeextension.com/Protocols/Immune-Connective-Joint/Rheumatoid-Arthritis/Page-06
And here is a good primer to read on the need for supplementation with DHEA as we age to fight RA.
http://www.lifeextension.com/Protocols/Immune-Connective-Joint/Rheumatoid-Arthritis/Page-07
I have experimented for nearly 4 years with 0, 50 and 100 mg doses of DHEA, and 50 mg/day has made a huge difference for me.
I’ve been on 60mg of pred a day for a year but even before that I was getting lots of steroid shots and dose packs along with my daily 5-10mg. Some days during the week I have to take up to 100mg just to help with the flares and when I call my rheumatologist office all they will say is well we can give you a steroid shot or dose pack on top of that to help with the swelling and pain. I’ve gained so much weight now that I can barely walk or breath well and I fracture something or tear something about every 3-6 months the past few years. How can I lose weight while still on this regimen?