Prednisone and Rheumatoid Arthritis
Prednisone is the most common symptom treating medicine for Rheumatoid Arthritis. Medicines which fight the Rheumatoid Arthritis disease activity are called disease modifying anti-rheumatic drugs (DMARDs). Rheumatoid arthritis usually requires both disease treatment and symptom treatment.
Lately, I’ve given a lot of thought to the prednisone Rheumatoid Arthritis issue. Like so many other RA issues, the prednisone one is huge. But we have to start somewhere.
Prednisone and Rheumatoid Arthritis themes
Looking over comments and messages, I notice some interesting themes.
- Dosage: Some medical sites like Johns Hopkins say prednisone is prescribed for Rheumatoid Arthritis in a low dose of five to ten milligrams per day. However, patients often mention doses as high as 30 or 50 or even 70 milligrams, at least on occasion. Of course they vary, but the numbers that patients give are consistently higher than what is on the books about RA and prednisone.
- Length of prednisone use: Typically, prednisone is described as a “bridge” medicine for Rheumatoid Arthritis. Supposedly, RA’ers use prednisone to temporarily help them manage symptoms until disease treatments become effective. However, patients describe using prednisone for RA for months and even years. I know several people who’ve used it as long as ten years.
- Dislike for prednisone: This one seems pretty unanimous. Surveys say 80 percent of Rheumatoid Arthritis patients will use prednisone at some point, but it seems that none of them welcome its side effects. There is a long list of reasons patients see prednisone as a mixed blessing.
What’s your experience with prednisone for Rheumatoid Arthritis?
How do you feel about prednisone? Were you surprised by anything about your prednisone experience? Do you think your experience was typical?
Note: Much more on prednisone and Rheumatoid Arthritis – click here.
Recommended reading:
- Psoriatic Arthritis and Rheumatoid Arthritis
- How well do Biologic medications help Rheumatoid Arthritis?
- 3 Reasons to Begin Using Rheumatoid Arthritis Medicines to Fight the Disease
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
I have the love/hate relationship to pred that we all probably have. I was on it for the first 3 years after diagnosis, finally weaning off (max of 5 mg) last summer. Enter this fall/early winter, when my RA became active, switched rheumy’s, and current meds not working – back on the stuff again, this time at 10 mg, since the 3-4 he put me on was ineffective. At 10 mg, I feel like a new person, but hate the munchies that go with it.
And my rheumy lets me stay on my NSAIDs also – I alternate between Motrin 800 2 or 3 a day, and when that doesn’t work too well, I switch it to diclofenac 75 mg twice a day. Works for me until we start on the Orencia this month!! (And hoping that will be my magic therapy!!)
I’ve been on prednisolone for nearly 8 months continuously now. I hate it – I’ve put on loads of weight (this has happened in the past as well, but mercifully it just falls off when I stop!) Current dose is 10mg, on my way down – very slowly – from 40mg. The higher dose was to cover my asthma when I got pneumonia. I’ve been told to stop at 10mg for the moment. I am on 3 DMARDs (fit criteria for antiTNF but can’t have it for complicated non-RA reasons) and also NSAIDs – with PPI cover.
BTW, Kelly how do you manage with steroids in the evening? I would never be able to sleep!
I manage ok w/ low dose (like 5 mg) at dinner time. Hasn’t bothered my sleep. I sleep like a rock since I got this bed (latex w/ feather bed over = heaven).
If you are taking prednisone and methotrexate ,along with enbrel. Be advised, your immune system is non-existent. I know first hand as I was taking all 3 after flares started back up. I have had RA for 21 years. I fell and had a small quarter sized wound on my left knee that would not heal. 2 surgeries and a skin graft later, I am just thankful, I did not lose my lower leg from infection. It may never happen to you, but be advised, it can. They are wonderful drugs, but the warning are real.
I started at 40mg october 2009 when I was 1st Diagnosed. I have been on 6 mg for the past 10 Months and am working my way off of it. I can’t wait to get to 0! Started 4mg last week…crazy how long it takes to come off of it!
I haven’t had any side effects from prednisone yet. I’ve been on it since Aug 2010, but only 5mg. It helps me a lot with pain in my wrist and foot. Sometimes when it’s really bad I’ll take 10mg. My doc and some nursing friends did tell me NOT to take any NSAIDS with the prednisone unless okayed by doc first because NSAIDS with prednisone can lead to bleeding. I can’t remember what else they said though. So, I need extra pain relief, I take tylenol. They said that wouldn’t be bad. I have taken prednisone packs in the past for different things and never had problems then either. I hope I don’t develop side effects, but it’s always possible! Lucky too, because I haven’t had any side effects from my methotrexate yet either. And when I looked that up, it was a very long list! YIKES!
I have been taking prednisone for about 3 years now and my rheumatologist increased the dose from 5 mg to 10 mg about 6 months ago. I just saw him again this past week and he asked me what I thought about it and my feeling was that I wasn’t convinced that it was making any difference other than I am gaining weight. So we both decided that I should taper off and quit taking it. When you have RA sometimes the number of pills/medications you have to take can be overwhelming. Why take something if it isn’t working? I don’t think it is working for me.
It didn’t work at a low dose for me either, Heather. I believe that it does for many people, but no luck here.
Prednisone can be very helpful for short term use until something better kicks in, but NEVER NEVER NEVER rely on it. Take it from me, it’ll come back to bite you in the @ss later on. The long term effects are NOT worth it! Trust me!
Osteoporosis
Diabetes
Eye problems
to name a few…
Carolan, what do you think about certain percentage of patients with “recalcitrant RA” (some studies say 30%) for whom the dmards / Biologics don’t work? So many have told me that prednisone is the only thing that improves symptoms.
I have been on Prednisone for aprox 14yrs now. Started on a high dose and now on 5mg a day. I also use a Medro-Dose Pack about every 3rd month between Rituxan treatments when I flare. I have a love/hate relationship it. Gained 50 lbs at least since taking it, but wouldn’t go off of it for the world.
Hi! I have been on prednisone for 28 years and I’ve been told that my body is no longer able to produce it on it’s own so I can never get off it totally. My dosage is 8mg daily, so that’s not too bad but let me tell you the damage has already been done! It thins out your skin so that you bruise from the slightest bump against anything. I’ve had those “bumps” turn into a blood filled hematoma that wouldn’t heal and 3 months later turned into a leg ulceration that required months of wound care. That same side effect of thinning of skin probably played a big part when my colon perforated without giving me any prior symptoms or warning. That led to the loss of my job and beginning of disability. The longer I’ve been on prednisone, the more medical problems I have and they can all be linked in some way to it. I have eye problems – the beginnings of cataracts and I’m on my third treatment for a swollen optic nerve. On one occasion it caused a blood clot in my brain. Prednisone is the devil but it has also been a blessing. I have had to increase it for a few days to get me through a rough time but I’m careful to keep my everyday dosage as low as I can. A blessing and a curse! But for those of us who have really stubborn RA where nothing else works, prednisone always does.
Nice summary, Suzi.
Hi…I’ve been an asthmatic for 34 years now. I am now 37. I was placed on Prednisone at the age of 12 yrs. My body has been dependent on it up until 3 months ago. During this time…I have been diagnosed with cataracts in both eyes at the age of 16. I had surgery in my left eye 10 years ago. My right eye is getting worse now. At 18 yrs…I was diagnosed with Osteoporsis in my lumber spine. My calcium is very low. I’ve broken and sprained both my ankles about 5 times. I was diagnosed with Diabetes Type 2 11 yrs ago. I was borderline at 21yrs. I had my gallbladder removed in 2003…and because of being on prednisone for this long..I was a “HIGH” risk for surgery. I made it thru the surgery itself, but during recovery..I started losing blood. I was diagnosed with Hypothyroidism 11/2 yrs ago. I have been on rollercoaster rides from my prednisone doses being from 120 thru IV to 80 mg orally. I was taken 40 mg-80mg last year because I developed pnuemonia twice last year. In April of this year…I was able to whene myself off with the help of the dr. Everytime i have tried to come off this med..My body has had a withdrawal. My body was addicted to this med. The first 2 weeks..I broke out in hives. The third week..my muscles and joints ached so bad. I couldn’t get out of bed. Then the Asthma starts up. But this time…my asthma didn’t start up. I was very happy…but then…Mother’s day this year…my feet swelled up…my hands started hurting bad. The next morning..I was stiff. I could not get out of bed. I was bed ridden for a week. I moved around a bit the week after, and that’s when the pain got worse. I went to my dr..and explained what was going on…she kept telling me..”Oh it’s just the withdrawals…it’s ur osteoporsis..let’s see..what do we have u on?” I went back to another dr who I used to see…and got a 2nd opinion. He grabbed my hands squeezed them and then said…”Were u sent for xrays and labs?” I said, no. He sent me for Labs & Xrays, and now I have an appointment with a Rhematologist. 🙁 But I knew something was wrong. Until my appointment I have been just taking an aleive once a day. Unless i have to go somewhere i take 2. But I DO NOT WANT TO GO BACK ON PREDNISONE!!
Hi! I was put onto 10mg Pred 2 weeks after being dx’ed with RA. I was in such a bad flare that it was impossible to get from bed to bathroom, comb my hair, brush teeth etc. Within 24 hrs I was out of bed like RA had never visited me. I am so very grateful for that drug I can tell you! Took me 10 months to slowly come off of it, I did get a little weight gain and that was the extent of side effects for me. I do realise it was a lower dose and I hope and pray that if I ever need it again, that 10 mg will work its miracle one more time. Cant imagine 100mgs though! Wow… 🙁
I was on a NSAID at same time but weaned off that within 2 months of beginning Pred and have not needed it since.
Best of luck to all of you having to go with Prednisone, one thing I have learnt with RA is to fear the disease more than the drugs but given all the side effects many of you suffer, I dunno about this particular drug. Love to all of you!! xx
Great point Lyn – fear the disease more, but be careful of this one in particular.
Thanks for the input evedybody. The encouragement along with precautions are helpful. I can see some difference and though I am still taking the Aleve. it’s a smaller dose and I do maalox or pepcid. I really want to give the pred a chance since I have no other options as stated earlier . I had a love/ hate relationship before and maybe I can again;-) I think that the main thing is with already having low platelets, WBC and others-I worry there just a bit since that was not in the equation a few years ago. But, I do have frequent checkups and blood work so I will just have to trust the docs- which I know can be scary;-) TY again
I felt fantastic on Prednisone but I gained a lot of weight on it. Family and close friends commented on how bloated I looked 🙁
The Prednisone does help me with the inflammation, but the side effects are really hard to live with, at least for me. Lately I’ve been breaking out in hives, my face feels like it’s on fire, my face and feet are swollen, and I am constantly on the edge and short fused. I am bothered by things that I usually don’t even pay attention to. Very impatient. If I would have a partner I’m sure he would have moved out by now. My poor kid has to live with me for another 2 years at least.
I used to take Methotrexate, but I got to weak and couldn’t fight off any infections. Lost 30lbs in 4 month. During the time I was on MTX I was on seven antibiotic treatments and had to fight off a pretty bad kidney infection in March. That’s when they took me off the MTX and started the Prednisone.
I did a follow up with my doctor 4 days ago and I think my doctor believes that I had a long enough break now and that I’m strong enough to play lab rat again, since I’ve received a letter yesterday saying that she wants me to up my Prednisone from 5-10mg and I’m supposed to start Plaquinel to see how I react to it. Already called in to the Pharmacy without me even having a saying in it. Gotta comply with the Doctor right? Especially when you’re on a waiting list to see a Rheumatologist.
Sometimes I wonder. If I don’t take the meds I’m in a lot of pain and deformation of joints might kick in. If I do take the meds I don’t have this much pain, but instead I deal with tons of side effects that make me really sick. Can’t win for loosing.
And then there are those people that don’t understand why we get depressed?!
That’s ok, lets just add 50.000 units of Vitamin D to the whole deal and everything will be fine again, right?
Hello,
I was recently dx with RA, although all of my blood work comes back negative. I only had one test that showed that my RA factor was elevated by 1 point. About 14 years ago while living in Belgium, I underwent knee surgery and the surgeon told me that I would struggle with RA. Keep in mind, I was only 20 and had no clue that there was a difference between RA and plain old arthritis. Well 14 years have passed and I have had all kinds of mystery pains in my wrists, shoulders, chest, and lungs. The last two most recently, which have caused me to be hospitalized on 3 occassions, due to my inability to breath, heart rate through the roof, and blood pressure through the floor. Needless to say after draining me dry, my blood work still comes back normal, however the Rheumatologists seem to believe that my crooked middle fingers and unlocking elbows are signs of RA.
My doctors have placed me on Decadron for my flare ups and it works VERY quickly, but the withdrawals are hell. I am currently trying to find a weaning schedule that works for me without all of the horrible side effects. The worse is my patience..I am a very patient person, but when coming off of the decadron, its very hard to maintain my composure, but I am working on it. But with all of that said, DECADRON has worked wonders for me. Within a day, the pain is gone, if I take it at the first sign of a flare up. I start with 4mg, 3x/day for 2 days, and then begin to lower my dosages until I’m down to 2mg, 1x/day, every other day. I still get the side effects, but they are minimal. Hope this helps someone. Anyone have an exerience with DECADRON?
Shenna, steroids for flares are very common. Does your doc say why he prefers this one instead of prednisone? I don’t know about it.
I keep looking for others like me who can’t tolerate RA drugs. I tried Plaquenil and leflunomide and had immediate severe allergic reacions to them. Methotrexate carefully increased over a year still made me sick for 3 to 5 days after each dose-and a toss up whether the RA or the Methorexate was worse. I also tried Sulfasclazine with another severe reaction. I can’t afford infusions and even if I could I am afraid to even try it due to the allergic reactions I have. So my RA doctor had me on nothing for awhile then a high dose of prednisone during flares. It was not good. Right now I am taking 5mg of prednisone a day along with tramadol and I am somewhat functional. For flares I will take a higher dose for a few days I guess.
Hi Mary-you are not alone!:-) Due to low platelets, white counts and various red blood cell issues the doctors will not touch me with the RA drugs. Even my hemotologist told me that it could be disatrous for me. So I am also on Pred. Been taking 10mg daily for about seven months now along with Aleve twice daily like clock work. So far I have tolerated the pred pretty well but am due bloodwork again in a few weeks. My weight has stayed about the same and I try to be better about avoiding sugar since the pred can run that up. As evil as pred can be for some, it has enabled me to be functional and I have more energy than I did:-)
Doctor prescribed Prednisone for me and it doesn’t help me at all. I don’t get side effects (not that I want them) or anything. Its like taking a M&M. I figured it would do at least something. Anyone else have this problem?
I was diagnosed with undifferentiated inflammatory arthritis, probably seronegative RA, about a year ago. I’ve had 3 or 4 courses of prednisone taper since then and none of them have given me the dramatic relief described by others. In fact, I basically see no improvement with prednisone, and it gives me bad gastrointestinal side effects. Very frustrating! Do I really have arthritis? I’ve been on methotrexate for about 9 months and it seemed to be working really well, virtually pain free, until a month ago when my symptoms came back even worse. Again, short course of prednisone was useless. Don’t know what to do – very miserable.
I was recently taken off Humira (miracle drug for me) because of my white blood cells dropping. Until my rheumatologist and I decide what to try next I’m taking 5 mg of prednisone twice a day. The only side effect I seem to be experiencing so far is a burst of energy, which feels great. It isn’t affecting my appetite and I’m not snapping at people. It’s definitely helping the RA pain. I’ll be on the 10 mg daily dose of prednisone for two months until I see my doctor again. He’s suggesting I try Rituxan but I have to admit I’m quite scared of that one. On the other hand, new evidence is showing that using these new drugs can actually increase your chances of living a longer life because of reducing the inflammation. I’m all for that.
I didn’t use methotrexate with the Humira because I didn’t need it. Also, I had tried the mtx previously and I felt quite sick from it. That, and the fact that I couldn’t have my daily glass of red wine, made me give up the mtx. (I hope everyone is aware of the fact that you can’t use alcohol when on mtx. Mtx is already toxic to the liver without adding the alcohol.)
I’d really like to hear from people who are currently using Rituxan. Maybe someone can talk me into trying it?
Just found this discussion. During my early years with RA (starting 13 years ago), I failed many drugs including Plaquenil, methotrexate, Arava, Remicade. I received periodic steroids, and then 5 mg daily of Prednisone. Tried Enbrel, it was great, but I still could not get off the Prednisone without major increase in symptoms.I had essentially no side effects at that dose. Then 3 years ago I had to go off Enbrel because of blood cell counts, and I have had a terrible time. During the past year, I re-tried Enbrel, had 6 months of Orencia, then just recently Cimzia, all with no effect or with adverse effects. Prednisone had been increased from 5 to 10 a year ago, then 15. Without it I couldn’t get out of bed or function. I have huge side effects on 15 mg, but now even with it, I have just had to go out on disability. I know some rheumatologists do not approve of long-term Prednisone, ever, but it was the only thing keeping me mobile.
I have friends, colleagues, and even fellow RA-ers who are judgmental about Prednisone; I would ask for their understanding that for me, it is the only thing that has kept me from being bed-ridden. I will be re-trying Humira soon, know there are a few others, but after this many medication failures, I do not know if I will ever be off Prednisone. Living with RA involves a lot of hard decisions and trade-offs….
Thanks for listening to me vent.
Meliann, are you still considering Rituxan? I’ve heard it’s not as hard on the immune system and if you can handle the infusions it can be quite effective. You start with one infusion, then have another in two weeks, and then you don’t use it again for several months, or until you have a bad flare, which can be a year or more. I’m tempted but will need to wait until spring because I’m leaving to go south for the winter soon. In any case, I’m sure I’ll need prednisone to get me through the winter. Did all of the biologics you tried affect your white blood cells?
Jane, Rituxan scares me, but I may – may – be ready to consider it if Humira doesn’t work out. I had done fine on Enbrel for 5 or 6 years before it affected white blood cells, and on re-trial 2 months after stopping, same problem, and then Humira at that time, same thing. Orencia had no adverse effect. Cimzia, which is in the same family of TNF inhibitors, had no adverse effect (but no clinical benefit.) We are now going to re-try Humira, hoping that now 3 years later, it won’t affect the WBCs. My rheumatologist says all biologics can affect WBCs, but she says Orencia probably less than others. She told me she has seen another new one, Actemra, affect WBCs as well as liver and cholesterol. Sigh… These are hard decisions, keep us informed, and hope you find something that works!
I was put on huge doses of prednisone in 2001 when I was first diagnosed with RA. I was told without it I was heading for a wheelchair. I have tapered to a dose of 9mgs but cannot get beyond that. Every time I try to taper my hammer toes on the left foot begin to get “taller”. I gained 35lbs. and now have osteoporosis and Cushing’s syndrome for side effects. I have been told I will be on prednisone for the rest of my life because my adrenal glands will probably never secrete enough cortisol again. My current rheumatologist is very much against the chronic use of steriods in RA but for me it is probably too late.
Let me add more to my post. In my 10 years with RA I have blown through Remicaid, Enbrel(2years)(constant sinus infections and knees hurt all the time but some relief from over RA pain),Humira( no effect at all), Cytoxin(caused fluid in my lungs—don’t ever get talked into it!!) Plaquenil(tire track hives all over my body),Rituxan ( best drug I used but effects have stopped after 4 years–did give me serious asthma and IBS and felt like I had been run over by a truck for about 3 weeks after my q 6 month infusions but still great relief from pain but not joint damage)and I just took my first dose of Actemra last week( stuffed up nose and muscle pain so far, also felt flu like for about 3 days)I am praying it will stop the joint damage. In these 10 years I have been on Arava( horrible diarrhea), methotrexate( I have tried to take it in various doses about 6 times and it flattens me each time—feels like horrible flu!!), Bextra( fantastic relief until my body recognized the sulfa in it and hives from top to bottom) and many other nasaids with increasing stomach issues. I am currently on ultracet, arthrotec, prevacid, and symbicort( RA lung with asthma). I have had 8 surgeries and 6 rheumatologists—finally have a great doctor!! I am waiting till after Christmas to have both of my knees replaced—the pain has become unbearable. My rheumatogist just talked me into going in front of a CME panel to discuss my history and I was terrified and think I did a funky job. I think RA Warrior is fantastic and am so happy that finally the real face of Rheumatoid arthritis is being shown. I just wished it had been here sooner to help guide me and others through this maze but Kelly you are a saint to take on this battle.
What a neat thing you did to be on that CME panel! Nothing is as good as hearing from “real” patients who know what the disease really is. Good luck with your knee surgeries!!
Cathy, thanks for sharing your history and I totally empathize. And I agree that Kelly is doing an awesome job with this site, which I have just recently discovered.
I just recently found this site also, and I’m extremely impressed! I’ve found more valuable information on RA than I’ve ever been able to locate anywhere else. But the best part is all the input from people just like me who are battling this horrific disease. I don’t feel so alone! Thanks, Kelly!!
I’ve only been put on the Z-pak and the side-effect that I noticed was I got weepy and depressed while on it. Those went away when I was done though. Reading some of the posts here does cause me some concern for the future, since I was just diagnosed this past September. At that time I had to be on two consecutive doses to enable the pain and swelling to go down with the flare I was having. In the future…not sure what to expect.
I have been diagnose AR three months now; non very aggressive, but I am a rare case; my AR was caused by interferon ( six month therapy): I now use gold salts (1 shot every ten days); 2 tabs od Plaquenil a day (Hydossichlorochina) and 2,5 mg prednisone in the morning and 2,5 mg in the evening. So far so good; symptoms have almost disappeared; it’s too early for an evaluation of side effects; this will be done soon after the first blood test, next weeks. My impression is that gold and plaquenil are beginning to work and my opinion on prednison is positive. The hospital I went to : Istituto Ortopedico Gaetano Pini – Milano . dip. di reumatologia – Dott.ssa Ingegnoli
I was diagnosed with RA about 2months ago. I was given prednazone treatment twice so far where
I start off with 6 pills for 2days 5 pills for 2days on down till I am off. Both times when I am off totally my body shuts down and I can barely move with hellish pain. They now are giving me my 3rd set of prednazone waiting for my methratextrate to kick in. Has anyone else had this experience?
I want to know what 15 mg’s per day will do to help the pain.
I am no longer able to take embrel due to having breast cancer so my RA has been creeping back. I find that taking a burst doseage of prednisone every three or so months really manages my symptoms.
I am 19 years old and have been taking prednisone on and off again for the past two years. I like to refer to it as the worst but best drug I take. I solves 40-50% of my pain problems within a couple days but along with those days I get hungrier, moodier, and I get less and less sleep. I take an average of 20-25mg a day. Prednisone is awesome, but it also sucks. I get really angry easy and it takes me a lot longer to calm down. I get extremely shaky to the point where I cannot seem to grasp things even more. I think my experience is pretty normal every person I talk to seems to have the same feelings as I do about Prednisone it is awesome but it also is not awesome.
It allows me for 2 months to be able to function to the point where I can work on an archaeological site in Italy.. So do not be afraid to use it if you need a little help out.
I have been steroid dependent since 1994. Before that, as a child, when I had severe flares, I was admitted for “mega doses” (their terminology) 1000mg solumedrol over an hour for few days. Then home on huge oral doses then taper off. Bug have never been able to successfully get off since 94. As a result, I had cataract surgery in my 30s, have had 34 fractures (many spontaneous), and more. All docs agreed no more going up on dose unless in life-threatening situation (e.g. Kidney failure). Now I’m done to 7.5 & hope to soon taper to 5 then 2.5 then OFF!!! After 38 years w/ what began as Systemic Juvenile RA at age 8, I’ve had great success with improvement since becoming a vegetarian..almost vegan. Animal protein=inflammation per the China Study and others. So glad I discovered your site TODAY! =)
I have been on 5 mg of prednisone for 6 years. I have found it controls my RA and it really gets me out of the flare ups quickly(within 10 hours) without increasing the dose much. I have had reactions from Enbrel and Humira and have not been offered any other alternative. Despite what my Dr says, Methotrexate makes me so tired I can not function. It is really not worth it to me.
My experience with PDN is short, just a few doses in ‘bursts’ so far. I have injury/surgery (5yrs ago) onset palindromic rheumatism, dx within a year. I am only taking meloxicam (mobic) to control it, and I can’t take NSAID’s. So relief is much appreciated these days. Because it’s ‘not there all the time’, I am not taking normal RA treatments. I ran across PDN during a sinus infection that swole my face shut, just so happens every major joint in my body was flared to kingdom come as well. And a miracle few days later I was new again. No pain. Great! Minus the sauna sweats overnight, irritation, and insomnia (already pre-menopausal anyway, thx). I have used the ‘burst’ pack only 3 times this year to control major flares but the symptoms are the same. Sweaty/hot flashes, insomnia, irritation, but only mild weight gain. If I know the side effects before, it helps me conciously combat them during use.
Thank you all for your input on this thread. I learned a ton about what treatments are out there and what problems you all have experienced along the way. As my disease progresses I can look forward and have questions ready for my rheumy thanks to your willingness to share.
Wrist pain couldn’t pic up a plate. Dr. Said ra factor elevated. Put me on predinsone difference between night and day. Have apt with reumotoid dr this week. The pain is coming back as I taper the dose.
I have been on prednisone more off than on for the last three years. I have had to take high doses and I stay at 5mg daily. I recently had a conversation with doctor. I am starting Rituxan infusion and since we have tried about everything else this is basically the last ditch effort from what he is telling me. I had made the comment that I wanted off the prednisone and was told that if this infusion didn’t work I should prepare to be on prednisone for life. I have Felty’s symptom. I am looking on articles about that even though it is rare. I’d like to know if you have any knowledge of it?
It took several Rheumatologists, 2 years, and a muscle biopsy to be disgnosed with RA, Dermatomyositis, Lupus SLE, and Sjögren’s syndrome. During that time I was in one big flare, in debilitating pain, and the only treatment was high doses of Oxy. In desperation, I finally went to UCLA where the head of neuro performed the muscle biopsy. He walked into the room, saw my face and hands, swore quietly to himself and asked if anybody was treating me for my Dermatomyositis. (Answer was no, I had never heard of it before). He took out his camera phone, took photos of my hands and face to use for teaching and gave me 60mg of prednisone before the surgery. I immediately switched to a Rheumy from UCLA where the usual combo of Plaquinel, methotrexate were added to my treatment. I was on the 60mg for a year – until I found a biological (Remicade) that worked for me as I couldn’t tolerate methotrexate. I’ve since tapered down to a consistent 10mg per day and have recently dropped to 7mg. I haven’t had many side affects during the reaper process. I’ve lost weight, and the “moon face” but the disease is right beneath the surface. My flares are more often but not as severe and since I’ve dropped my pain meds back, pain is my constant companion. I’ve been told to hold predinose at this level for a while to see if my adrenal glands will kick in. If you are on high doses of prednisone, be careful with your taper! Make sure you follow your Rheumatologist’s dosage closely as serious side affects may occur.
I have had RA for about 27 years and have probably been on prednisolone 5mg daily for around 20yrs. I have tried reducing the dose by just 1mg but can’t do it, long term use of this has caused me to develop osteoporosis. I wouldn’t encourage anyone to take this other than a Low dose temporarily. I would love to come off this altogether but it’s impossible for me to do so.
I’ve only used prednisone for flares, but whenever I’m on it I feel positively bullet-proof! In fact, after it kicks in and the flare is gone I try to get some projects done that I would ordinarily not tackle because I know I can actually do the work without consequences. I would hate to have to take it long-term as a friend of mine with lupus does, but for a temporary measure it’s pretty darned wonderful. Yeah, there are side effects, but they subside once I’m off. In the meantime I can jump tall buildings with a single bound, so I do.
Have had RA for almost 10 years. I go on and off Prednisone much more frequently than I want to. But I have no other choice in medications. I’ve been on methotrexate, plaquinel, for years, and sulfasalazine added to the mix this past year. I still very much need to keep prednisone in my aresenal for the days of pain and immobility. It sometimes is my only hope to function at all with out pain & swelling. It is the drug one loves to hate.
I’m in process of trying to figure out diagnosis. Saw Rheumatologist once. Have had many blood tests and a urine screen. Mononucleosis and Vitamin D deficiency only things off on lab tests. Currently on Plaquenil and 10 mg of prednisone (on a week, off a week), I guess to see if it helps. My symptoms are symmetrical joint pain in hands, feet, elbows, shoulders and knees. Plantar Fasciitis, persistent low grade fever, facial flushing, and sometimes flu like feeling. Also rt and left upper abdominal pain, constant, not stabbing.
Prednisone is wonderful for jt pain!
See Rheumy again next week.
My Mum is 76 years old and has been on Prednisone for 56 years. Four years ago she needed to go into a nursing home because her hip failed and the immobiilty while waiting to see a doctor about the hip caused pulmonary embolisms. She was hoping a hip operation would allow her to go back home again, but the clots had caused damage to the veins in her legs and she wasn’t able to walk well enough to leave the nursing home. She continued taking a daily walk on an arm frame though. Until last year she was on a stable dose of 10-12 mgs a day, but after a bout of pneumonia she wasn’t able to get below 15 mgs. Since the start of this year she’s been taking 20 mgs a day, but doesn’t seem to feel any better for it. It’s like the magic bullet she’s relied on for all these years suddenly doesn’t work any more. Her heart is strong but her lungs have been damaged by the RA and pneumonia, so she’d getting increasingly breathless. Sadly she fell twice about a week ago and it’s taken all week to figure out that not only does she have a serious gash on her leg and bad bruising, but she’s also fractured her femur. In this context the hospital have reduced her from 20 mgs to 15 in one fell swoop, saying she’d been taking too much and it’s made her weak. Maybe. She sure has her work cut out from here. But I just wanted to mention her as 56 years is a marathon effort as far as I can tell.
Your mother is a beautiful warrior, Catherine.
Thank you so much for this site, it’s good to see I am not alone. I was diagnosed with Inflammatory arthritis three months ago, put on 50mg Prednisone and then Methotrexate injections once per week (I’ve had eight injection is total and have dropped the Prednisone to 35mg per day). The swelling went down, but not totally, still extremely painful, still cannot use my left wrist apart from moving my fingers and the muscles in my arm as withering. I am not sleeping well, about four hours per night so I am always tired, my face is swollen and moon like and would love to change to something else.
Hi there,
I’m fascinated reading all the posts about prednisolone. I’ve been diagnosed with seronegative RA which has been in a severe flare-up for over a year now. My Rheumatologist prescribed hydroxychloraquine in February this year, but my pain is worse now, 7 months on.
My GP gave me a 5 day course of prednisolone a few weeks back to try and alleviate the pain while I was waiting for my appointment with the consultant. I found that the all over ‘background pain’ that I get with RA went, but the pain the the inflamed joints wasn’t really improved at all.
Am I the only person on the planet for whom prednisolone doesn’t have a miraculous effect? I feel like a freak.
And after a less than positive appointment with the consultant yesterday, when she refused to change my DMARD because my bloodwork doesn’t have inflammatory markers, despite me having obviously swollen and inflamed joints with redness and swelling, I feel like I’m on a road to nowhere with this at the moment.
Is there anyone else out there for whom prednisolone didn’t work on their RA, or does my lack of positive reaction mean I don’t have RA at all?
BTW – the Rheumatologist has decided that I also have fibromyalgia, although she hasn’t tested any of the 18 pain points and has decided that my severe fatigue is due to an ME flare-up. I haven’t had ME since having my children 8 years ago, and I don’t know why she would say that my fatigue is due to ME, when both RA and fibromyalgia present with extreme fatigue.
Sorry, I’ve wandered very off-topic here. As you can probably tell, I’m a bit all over the place with this at the moment.
Tree
Hey Tree, this deserves a better aswer than i can do in my phone. I’ll get back to this asap
Hey, Tree. I’m sorry you’re going through this.
A couple things-
Hydroxychloroquine / Plaquenil is about the mildest DMARD. That’s interesting considering your flare is “severe.”
About whether the steroids “worked” for you – there are some good reasons it might not seem to work. You are not a freak of course. I actually thought steroids didn’t work for me either until I finally tried a higher dose. That is based on genetics, and not your fault. More on that issue – https://www.rawarrior.com/prednisone-effects-results-may-vary/
Another post explicitly about prednisolone: https://www.rawarrior.com/prednisone-versus-prednisolone-the-same-for-everyone/
To be very blunt, I think the diagnosis of FMS / fibromyalgia that you describe is typical (no actual measuring etc). RA / RD is a connective tissue disease, but for some reason doctors seem to only consider that it can cause synovitis and bone erosion. This focus leads to many of them diagnosing soft tissue symptoms as FMS.
I hope this helps some.
Hello,
I been on prednisone since I was 10 and it sucks I’m so use to it . If I don’t have it my RA hurts so bad I can barely move my joints hurt all over.. I wish there was something else out there..
me too, me too, Yvonne
Has anyone heard of or used low dose Naltrexone?
Hi Kelly,
Thanks so much for your reply. It’s so reassuring to know that I’m not a mutation, and that the way my body reacts to these things isn’t my fault (as my Rheumatologist seems to imply).
I’ve got a lot of pain in my hands, wrists, elbows and shoulders, with less severe and more sporadic pain in my knees, right hip and both feet. I can feel changes in joint shape in my hands in particular, and the swelling in the joints is obvious to anyone who looks at them. I’ve also now got restricted movement in a couple of the joints, and have had to adapt the way I do certain tasks; I hold a pen between my first and second finger now as it’s too painful to hold it against my thumb joint for instance, and have to use my first two fingers on my right hand to create a pincer grip.
My Rheumatologist seems to think that my seronegative RA is ‘mild’ because my blood markers are normal, despite the pain that I have, which keeps me awake at night, and which has started to impact on daily life. I’m so stiff in the mornings that I have to really force joints to be able to do basic tasks. Things improve slightly as the stiffness eases (sometimes) during the day, but for me, this feels sever.
I’ve been living with things generally at this level although with some short periods of slight improvement, for over a year, but I certainly don’t think that the Hydroxychloraquine has improved things.
I have an isotropic bone scan next week, and my consultant has said that if this shows any signs of inflammation she will then reconsider the drug treatment, so I’m doing everything I can think of to cause as much pain and inflammation as possible.
Otherwise I have to wait for the follow-up consultation in December, when my husband is going to come with me to support me and what I’m saying and try and push for some more satisfactory responses.
Thanks again for taking the time to reply, and for posting the links, which I’m going to look at now.
Tree x
l am not having results on predisone either. am now up to 50 mg for 5 days and even it is not working for the 24 hrs. Trying to get doctors to understand this is like pulling teeth. I have been on since July with not much releif no side effects in fact l have lost 6 pounds. l have tried to explain that it does not work and can l try spliting the dose in two morning and evening but they do not want to do that either. So l am at an impass and soon will try this on my own to get some releif. I started humria have had two injections but not working yet
Hello..I had a flare a month ago..severe..first one for me..I have been on steroids ever since..I still keep having small flare ups when they are trying to reduce my dosage..it usually starts in my hands and wrists.. I am at a loss now what to do…I have many other chronic illnesses which worries me being on steroids. my inflammation markers still remain high…I had to increase my dosage by five this morning. For a total of 15.. this flare seems to affect my body as a red rash with heat and itching..and my eyes..stated in my right pinky..couldn’t move it and swelling and pain..then the pain moved down the same side of my hand. Sore, red, swollen and itching..I have steroid cream that helps so much. And ice seems to work short term.. then my left hand is now aching and my upper arm is itching…this is like the third reaction, or flare in a month!
I am curious. I was just diagnosed with RA on Tuesday. My RA factor was 217.9 and Cyclic Citrulline Peptide was 15.6. The CCP appears to be negative. Does that mean it could be a false positive? I am concerned with meds prescribed (prednisone – refuse to use & methotrexate) and have choose not to take anything until I get a second opinion and do more research. Any input would be greatly appreciated.
I’m surprised at how insanely angry and sad I get! Like being an adolescent! A mentally ill one at that. It’s a very evil miracle drug.