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
Can you spell CUSHING’S SYNDROMe?!?!?!?!
I ballooned when I was on steroids…I HATE THEM!
Yeah. :chic:
hi kelly,
right now i m prescribed not exactly prednisolone but a chemically enhanced form for lesser side effects ie. deflazacort.
it does not feel gud to hv it cos i dnt wonna gain any more weight.n any other side effects. this time i even started crying at the clinic when doc prescribed,but he convinced dat dis wont cause any weight gain.actually i m most worried abt this very side effects…others like lesser bone density n calcium absorbption n moon face n all i know but i dnt wanna gain weight.but i trust my doc that it must b necessary dats y he gave,otherwise he listens to me also…..n especially when i m with tears in eyes…… :heart: :shame:
I was on predisone for 7 years. On 100 mgs for close to a year every night. I started off at 5mgs than went to 50. But after I had my twins, I could not afford the Remicade. SO I had to up my dosage to 100 mgs per dr. orders. Not to mention when my twins were 8 months old my husband wad dx with stage 4 cancer. So the stress of everything caused more flare ups. The side effects of predisone for me was the attitude problem, gain weight, cushings syndrome, ostoarthritis and narcosis of the hips(at the age of 26). Also any little scratch or surgery I have it takes 3 x longer to heal. Side effects are horrible but I was able to move and take care of my family. Too bad when you go off the predisone the effects go away but they do not.
That is the highest RA dose I’ve seen reported: 100mg. Wow.
Yep, me too, at 100 MG, as I “fondly” remember. I was in the hosptial with what they could not actually call Pneumonia, but my lungs were so infected and inflammed, they had to give me Dilaudid, which did not really do anything. Anyway, I remember how black and blue my arms were due to the high dose of Prednisone. They said it was ok, just bleeding under the skin. Excuse me?????? OK????? I think not. What is it doing inside. Well, it did finally calm my lungs down when antibodies did not. Two packs of Z pack and nothing. So, way back several years they should have DX me with RA. Boogers!!!!!!!
Don’t you hate that when they say “oh that’s ok” – This week I had this new hard heavy blood pressure cuff locked onto my wrist by a medical asst. It swelled up against my wrist painfully. I said “I have RA” – she said. “That’s ok” 😛 …No, it’s not.
[[necrosis of the hips]] That is exactly what happened to me because a regular doc, not a rheumie, gave me prednisone and i thought it was a miracle drug. Nothing could be further from the truth!
I was on 10mg for a year. Being that 10mg is a relatively low dose (compared to 50 or 70mg), I was surprised that I had so many side effects so quickly. I had mild weight gain, dark facial hair (so attractive on a woman!), the “buffalo hump”, prednisone belly, and my personal fave, the moon face. But it also kept my PA under control even better than my current drug of choice, Humira. The side effects – and long term effects – are awful, but prednisone really does work in controlling autoimmune arthritis.
Yes, it works very well to control the symptoms. But not to cure the disease as once hoped. 😕
I was hospitalized twice due to uncontrolled asthma and while I was almost incoherent, they put me on 80 mg of solumedrol (sp?) 3 x a day. I was horrified when I found out I was placed on such high doses. They stepped me down, but the asthma required the high dose to stabilize me.
Thankfully I do not have side effects at all to prednisone; and I hope now that I am on 20 mg/ day that I may be able to wean completely off. My rheumy says she has some patients who cannot wean off of 2.5 mg/ day.
Kim, yes, I know those who “can’t” either. Did you doc say why?
My mother could never wean off either. It was tried numerous times. The last time it was attempted, she ended up hospitalized. The doctor said she could never be completely off pred. again after having been on/off of it for more than 8 years. I don’t know why that was exactly.
I was on prednisone about 20 + yrs. ago for my allergies, before RA. I kept having pneumonia due to allergies so the allergist put me on a high dose of prednisone and I was on it for a long period of time. I woke up one morning unable to move my legs due to severe pain, inflammation and had no idea what was wrong. I was rushed to the hospital and admitted because I had to be weaned off the prednisone and was in serious condition. After this episode I had daily, severe pain in my right leg. After numerous appointments with every specialist under the sun, I was diagnosed with Avascular Necrosis of the femur and tibia in the right leg. I had to wear a specially designed leg brace which took all the pressure off the bones to see if the bones would heal on their own, if not I would need bone marrow replacement. Luckily, the bracing worked 🙂 Flash forward 20 + years I now have RA and was terrified that I had to use prednisone at different intervals for my inflammation. I am still afraid of it, but use it when needed because it does help to relieve some of the pain associated with a flare. My rheumatologist constantly tells me that 5 to 10 mg. of prednisone a day is a small amount and should not hurt me. He also says that our bodies make 5 mg. of prednisone on its own daily. So maybe Johns Hopkins knows something. Maybe, just maybe 5 to 10 mg. a day might help us RA’ers maintain some control with inflammation. Reading what I just wrote proves, no one knows…not even the scientist! Too many maybe’s or could be’s and possibly’s in the world of RA medical care! We are held hostage to the, give it a try and remember it will take at least 4 weeks if not longer to see results!
Currently, I am taking 25 mg. a day to help with my current flare.
Cindy
I actually lose weight when I’m on prednisone. I love it! Not only do I feel great, but I get skinny. The only problem is that I’m a raging B*TCH! It is the worst feeling in the world. There have been times where the rage is so intense, that I feel like I’m going to have a heart attack. Once I’m off of the meds, I look back on situations that infuriated me and think how stupid it was. Also, there is nothing worse than the taste! I swallow as fast as I can but somehow manage to get some of that horrible taste in my mouth! ACK! I’ve never been on it for more than a month or so (besides when I was first diagnosed).
Weight loss and the taste is the least of your problems when you’re one it, even if you’re only on it off and on over the years, which was the case with me. Still, I ended up with avascular necrosis (bone death) in my hips and osteoporosis.
okay I am so jealous of you losing weight 😉
I was just diagnosed with inflammatory arthritis, even though my rheumatoid factor is 345. My doctor is treating it the same as he would RA, but without the label.
I have had flareups in the past that have been taken care of with a shot, but the last one I had was hell on earth. It lasted three weeks, even with a shot. I went back to the GP (before I was able to get in to the RA doc) and he put me on the same dose of prednizone he would use for someone with a severe case of poison ivy, gradually tapering off over two weeks. It was the only thing that saved my sanity and took the pain away. Yes, the taste is terrible, but I’ll take that over the aches and continual tiredness I felt without it.
I’m over the flareup now and the RA doc has me on methotrexate. It remains to be seen how well this will work. In the meantime I’m just like a lot of you…waiting in dread for the next flareup.
Chris, 345? That’s odd. Did he say why? Is this the first opinion?
I’ve been on over 10 years, mostly l0 mgs or under, but was at 20 mgs for a while. Only off a couple or so times and only for a few months at a time off. Most of the pesky effects, nothing too serious yet, but expect that will come if I don’t get off eventually. I think some docs don’t understand how some folks bodies can get so dependent on it. I think there are probably lots of cases of prednisone muscle damage/weakness and prednisone myalgia that get misdiagnosed as fibromyalgia and wish they would do some research on this.
Chelsea, I’ve been working on that puzzle & that is a good idea that I had not explored yet. Thanks.
BTW: 10 years? Why do the books say it is only used for short term & that’s not what the patients tell me?. They aren’t prescribing it to themselves…
No, we aren’t prescribing it ourselves. But sometimes it’s the only thing that makes the pain just bearable enough to get through the days, AND it’s cheap. O.k. the 1mg pills aren’t as cheap as the higher dose pills, but still cheap compared to everything else. Doc and I both agree I need to get off, but until economics can allow otherwise, if ever, I will remain on it so I can get through life.
The little I found research wise some years ago seems to indicate that prednisone myopathy shouldn’t occur on lower doses, but I don’t feel it’s true. Now I suppose that myopathy is different than myalgia and that’s an issue to review while looking at the overall topic. Regardless, I think it’s something that needs to be studied more, although I don’t know if anyone is biting to do such studies. There is not much in depth out there on ‘rice bodies’ in RA either which I wonder if that might be a more common cause of “excess” pain in many RA’ers.
Chelsea, I guess you’re right about not too many studies right now on rice bodies. I’d not heard of them before! You made me so curious, I went straight to read up on it. Be sure I’ll read more. Every day, this disease amazes me. How can there be such destruction & physical oddity to be found & still pain is shrugged off as psychological?
I guess because until only a few decades ago, studies only included men. Who just wrote that post? Thank you whomever it was! Hysterical….hysterectomy….It will take decades more to remove the biased thinking and assumptions….just like it will take to fix health care….
Ah, yes. We’ve discussed that etymology before here on this post. Don’t think it’s a coincidence. How many write me telling me they were given hysteria as a dianosis before RA! I have commented that they are all female.
Then there are those female docs who buy into all that because that’s what they learned in med school.
I was never given more than 20 mg at my highest, and still got avascular necrosis and osteoporosis. Sometimes you can’t avoid using it, but my advice is to stay away from this stuff if at all possible.
I have been on Prednisone for almost two years now at the dosage level of 10mg a day…. It doesn’t do anything for me at all. My rhumy told me that he wanted to increase the dose but I told that I really wanted a break from it, so we decided to just stay on this dose for a while longer. I gained about 15 lbs when i first went on it, and my weight has stayed the same, even though the other meds cause me to stay away from food. I can’t shed a pound. I am still swollen, my inflammation levels are through the roof, and I have inflammation popping up in other areas other than my joint areas now. Its not a miracle drug for me. I am glad that it works for some of you though.
That sounds frustrating. Maybe increasing dmards would be better than just increasing a long-term dose of prednisone – Just an idea. Then, maybe you could decrease the pred like you wanted to.
By the way: if you don’t agree with him, it’s ok to get a 2nd opinion. I always felt like it would be a sin or something…
I am so sick of Prednisone being the answer for me. We have pumped up the methotrexate and plaquenil and the only thing that is keeping the RA at bay is the Prednisone.
I don’t have insurance, so everything is out of pocket especially the most-wanted: biologics. But I am trying to get on a scholarship program to move past the Prednisone and get on Simponi.
You need to combine Enbrel or humira with your mtx. All drug manufacturers have patient assistance programs that can get you what you need for low cost or for free.
I have only used prednisone sparingly a couple times to allay flare ups. I have to say that it works wonders on calming down my symptoms. I would be afraid to ever be on it long-term because of the potential side effects (I wasn’t on it long enough to experience side effects).. but it does seem to work for a “quick fix”.
Good ideas, Dana.
I had been on prednisone before (for terrible eczema flares), and my experience always included weight gain, though that would stop when the sharp, tapering dose ended. I also felt euphoric! I could climb mountains! Run instead of walk!
When I took it for RA, at a lower dose for a longer time, I gained weight, didn’t sleep, had night sweats and felt absolutely miserable. I was very, very grateful when methotrexate kicked in fully, which took about three months, though I was also very, very grateful when prednisone made such a dramatic improvement in my terrible initial flare.
It’s the worst miracle drug ever, right?
“Worst miracle drug ever” — Good one. Did you see in the RA 101 I think – what they used to say about prednisone? That it was a miracle: RA patients could get up off their beds and walk. They could walk right to the autopsy table. :shout:
The doses were much higher then, of course.
[[Worst miracle drug ever]] Perfect!
I was on Prednisone for about 8 months, as I was trying to find a medication/treatment that would work for me. (I currently am on Enbrel and am having a good deal of success with it). The 8 months of Prednisone was about 7 months too long for me. The largest dose I was on was 20mg, and I was on 10 mg most often. I ended up having all of the typical side effects, many mentioned above, including the weight gain, moon face, etc. I also had serious leg cramps every night due to the lack of calcium in my body. I was warned of all these side effects ahead of time by my doctor, but was I was not prepared for was the apparent psychological effects the drug had on me. I stared having a very short fuse and would be quick to anger. This may also have been due to having 2 small children, but I did notice this behavior subside when I stopped the drug. I was highly emotional and also had what I would call bouts of depression. The depression stemmed from my worries that I may not find any other drug that would ease my symptoms and that I would have to be on the Prednisone indefinitely. The depression also came from looking in the mirror each day and not recognizing the person I was staring at. The physical changes to my body were so drastic that I no longer looked like myself. I look back at pictures now from that time and I can’t believe the effect it had on me. Fortunately, when I began the Enbrel treatments, I was able to slowly taper off the Prednisone and I’m happy to say I have not been on it since. It’s so interesting–the drug took my pain away like really no other drug has been able to do. And I know it has many other uses for many other diseases as well. But the side effects and long term risks are so high, that it doesn’t seem safe. A double-edged sword for sure.
Excellent comment, Jenelyn. Thanks.
The only side effect I had was weight gain, I used this as a license to eat lol. Soon tho learned to control my appetite and my weight is good. When I first went on Prednisone some 22 yrs. ago I started at 50mg. per day as it was that and Meth, no other drugs like now.
I’m like Barbara as I’ve been on it a long time(20+years) usually at 10 mg or below but with occasional bursts, along with MTX. So glad there are now newer drugs such as the biologics to try so steroids can be decreased and hopefully stopped. I’ve experienced osteoporesis just recently and have that buffalo hump thing. My middle could use some “whittling” but don’t know if it’s from steroids or perimenopause. Probably both. It does take awhile for you to start losing weight once the dosage is lowered. Everyone is different. Some people seem to have more troublesome side-effects at a much lower dose than others. We got to do what we have to do -vanity aside…Although I realize sometimes side-effects are more than just vanity-driven issues. Each doctor has to work with his patient and how THAT INDIVIDUAL PATIENT can handle the prednisone and what their disease requires and how their body responds.
As with the above comments I was on Prednisone 22 years with a usual dosage of 5 to 10mg daily. With a flare I would take up to 40mg daily for short periods. It took me about a year and a half to be weaned from this drug. During the time I took Prednisone I experienced weight gain, moon face, mood swings and decreased sex drive along with osteoprosis. I will always have a love/hate relationship with this drug as I feel it did get me through some really bad times but the side effects suck lemons!!!!
Did you really take prednisone everday for 22 years?
I have been on Prednisone for 6 months and have started tapering down 3 weeks ago from 10mg. I started with 40mg when first diagnosed in October. While it did seem like a “Miracle drug” at first, like most I am anticipating the day I no longer take it. I don’t fell it is working anymore. My methotrexate seems to be taking forever to work, but has helped some and am hoping to get another medication to help along with the methotrexate. Like many others I have had night sweats, sleepless nights, weight gain and severe hunger when starting it. Now with the methotrexate I have lost most of my hunger, but have not been able to loose the weight I gained or get rid of the “moon” face. It seems to work for some people, especially at first, but I can’t wait to be rid of it! Thanks Kelly for the always thought provoking topic!
Predisone worked for a week a little with the pain but durring that week ( i was on 40 mg) i didnt sleep and i had panic attacks in the night being alone when the world slept.. then came the eating.. then came the weight. then came the hot flashes from doom.. the mood swings all att he same time of day i could set my clock to them.. argg i went down to 20 mg and still had issues i could sleep some days.. but mostly not.. then i dosed off totaly couldnt tolerate it.. not for the two hours of semi not pain i couldnt handle the hot flashes and mood swings and not knowing if i was sleeping ever again
I have been on prednisone for the last 7 years. I had to go on it when I developed an allergic reaction to Remicade. I was on 40mg for 4 years and have spent the last 3 trying to wean off but I can’t seem to get past 3mg. I’m back on 5mg because I’m seem to be going thru a particularly active flare period. The only side-effects I have experienced is the 70lbs of weight that I have put on that doesn’t seem to want to go away. I would give my eye-teeth to have the high energy side-effect lol! Can I just say I’m incredibly envious of that and the weight loss one!! No Fair!! I want THAT prednisone if I have to take it!!
Becky,
That is the highest long term dose I think I’ve seen here: 40mg for 4 years. Wow.
When my GP started me on 20 mg of Prednisone until I could get in to see the rheumatologist, I felt as though I had found my new, very best friend. I was on 20+ mg for a few weeks, and I remember telling myself that I just had to etch in my mind to remember how wonderful it felt to be without pain. I still have hope that someday I will again feel no pain. I am now down to 2 1/2 mg per day.
I am currently 5 months into being diagnosed with RA at least for treatment purposes at this point and 5 months of Prednisone. I feared the weight gain which I fully expected due to previous respitory experiences with prednisone. So far that hasn’t been a problem but I think that side effect is being off set by the other meds and their effects on my appetite. I do have the lovely hot flashes and nite sweats though. However I don’t think I could have functioned at many points in the last 5 months without it. I seem currently to be at a maintenance level of 10mg but it takes 30-40mg to get a flare quickly undercontrol otherwise it is 7-9 extremely painful days. Certainly have a love/hate relationship with the prednisones currently.
April, so 5 months ago, they put you on prednisone immediately? If you feel like saying, what other medicines did they give you? Did they tell you how long to expect to take the prednisone?
hey fellow Raers,
though i have had RA for about 14 years now (diagnosed at 16),i have only been on prednisone for about 6 or 7 years. it was 10mg at first then down to 5 mg and thats where it has stayed. honestly i have never added any weight on PDN…if anything i have lost weight since my RA ….my face kinda got rounder but not too moon faced….i have been lucky i guess
Now,i am just down to taking 5 mg on alternate days and its been hard on those days i dont take PDN…still i deal with it
now my struggle is really how to get some muscle coz i think my BMI is not as should be.
any ideas anyone?
of course i am going to see my rheumy next week and see what he proposes
I am interested to see what the rheumy says about this, too. Please let us know. It was surprising how common this long term prednisone is.
I use Prednisone to “put out the fires” as my Rheumy likes to say probably a couple of times a year. I take it for about 6 days with 40mg start and tapering down to 5mg. It puffs up my face and makes me always want to eat (which I don’t. I was diagnosed 14 years ago and also had to give up my much loved job of selling real estate. It was just too tough. I’ve already had one hip replacement with the second hip on the horizon very soon. I’ve also already been warned that both knees will need replacing down the road. I keep hoping I’ll wake up in the morning and it will all have been a bad dream but of course that doesn’t happen. It’s the same old pain that grinds away at me every single day…ciao
Thanks for sharing this, Rositta.
This is a sadly true assessment, it seems. After my onset, I learned about my paternal grandmother’s RA. She had RA and died at age 48, well before I was even born. A bit of research (talking with extended family, reading family diaries/journals) revealed she was treated — in the 1950s — with high doses of “miracle drugs” that made her feel MUCH better. Until she suddenly died of unexplained heart problems. The drugs? Steroids.
I was on 5-10 mg/day of prednisone for the first two years of my RA. I weaned myself off it, though, as I’ve experienced many of the more typical side effects (weight gain, sleeplessness, moodiness). I also saw more long term effects developing in my sister, who has Lupus and was prescribed high levels of pred for several years (40-60 mg/day for nearly 5 years).
Since dropping prednisone about 18 months ago, I’ve gradually had more flare ups and pain. I’ll be meeting my rheumtologist this week to discuss new treatments (currently on sulfasalazine and hydroxychloroquine). This therapy, with and without prednisone, has been largely effective for me. But now I’m seeing a lot more flares and routine pain episodes. I don’t want to dip back into the steriods so I’m going to have to get a bit more aggressive in the DMARD treatments now — I’m just a bit nervous about side effects and their potential to disrupt my lifestyle: RA is enough of a disruption on its own!!
Anyway, thanks gain for all the great information here.
Dan
Dan, finding out there are so many like your sister is something that needs to sink in. Do they tell her that this goes on indefinately? You mention your grandmother – I did the same interviews of family members with my grandad?
I was diagnosed with Lupus when I was during the Fall of my Junior year of college in 1997. I only needed prednisone once for a Lupus flare due to arthritis. A double diagnosis of RA came in 2007 when the beneficial hormones of pregnancy and nursing my daughter for a year wore off and a whole new (and much more vicious) set of arthritis symptoms appeared. I am sero-negative RA, and my sed rate is never an indicator of the disease; a visual of my inflammation and my honest communciation to the doctor was how I was diagnosed. Since 2007 I have been on prednisone much like Rositta above, “to put out the fires”, several times a year. Prednisone has lost all effectiveness over this last year. I was stuck at 40 mg for a month one time, waiting for some relief to come. My blood pressure always goes through the roof when I’m on prednisone, usually reading no lower than 150/110. And my last round of the drug has left me with a tremor in my hands that is annoying. I’ve made a personal vow (with my husband as the enforcer) that I will never go on prednisone again unless a life-threatening situation arises. It does not help, and I’m left with unwanted pounds, a swollen face and zero energy. (Prednisone sedates me more than keeps me awake!) I’m currently on Orencia, Methotrexate AND Arava, with oxycodone for pain.
Thank you for sharing Shannon. Is the tremor from the prednisone? Will it go away? Yikes.
I was on 10mg of prednisone for 4 months when I was first diagnosed. The first two weeks it made me feel great but then the weight gain and the rage set in. My poor husband had to bear the brunt of that. It was very hard to wean off of that stuff!
I got a steroid shot in my shoulder joint a couple of weeks ago and I am so greatful for it. I don’t know if it is simply the easing up of my pain that has made me feel so good or if it is the steroids, but I’ve been able to do gentle ROM exercises and I actually feel like getting out of bed in the morning. Anyone know how long this shot will last?
Hi Kate,
Don’t know how long the shot will last. In the UK, they do systemic shots that last up to a few months. Here, more I hear about localized ones. Probably does not last the same for everyone. If it were me, I’d quick go play tennis & paint my masterpiece while it’s good. :chic:
Seriusly, can you describe more specifically what this means? “Very hard to wean off of that stuff!” I am interested to hear what you went through.
Kelly, that was last summer that I was weaning off of it. Every time I lowered the dose, from 10mg to 7 1/2 to 5 to 2 1/2 then every other day (it took forever) I got terrible headaches and stomach upsets and felt just generally awful. Doing it very very gradually got me off.
And yes! I went to all my water exercises these past couple of weeks and was waking up every day at 7. I figure I better get myself as much (careful and gentle) exercise that I can before this wears off.
Do you know if the shots have the same side effects as the pills? I’m not feeling any bad effects right now though I might have been just a tad temperamental a couple of times. Not horrible though.
Kate, I don’t have any scientific evidence, but I think it’s like you said – much less side effects with the localized prednisone.
I know there is some systemic absorption of the prednisone even with topical creams.
I’ve just had a second shot in my shoulder. First one a month ago lasted for a week, but a pain free week was fantastic. Hoping this second shot will last longer. Much prefer a shot than taking tablets because of horrible side effects. Experienced no side effects with the injection. Have tried plaquenil, methatraxate etc. but could not tolerate because of serious side effects. Biololgical drugs are out because of history of cancers. So the steroids work and will put up with consequences so I can be relatively pain free and happy.
I have to say that my personal experience with prednisone was a very positive one. I was diagnosed the end of June and was on pred. from then until mid-September. The relief from my pain was pretty immediate – it was like a melting away each day until it was gone within a few weeks. I remember after being on it for a few weeks thinking “wow – I’ve never felt this healthy – both physically and mentally – in my whole life”. I was sort of sad when I was weaning off in September and I was starting to feel my “old self” (sans RA pain).
My mother (who passed away 5 weeks ago from pulmonary embolism) was on prednisone for more than 8 years. She had a disorder similar to pyoderma that she suffered with for all those years. She was on/off prednisone during all that time and of course, we saw the adverse effects long-term pred. can have on a person. But – it was really the only thing that allowed her to live any kind of life at all.
Thanks, Jackie. Good to hear good experiences too. What an amazing drug – wonder it can’t work without the side effects.
I am sorry to hear about your mother. Take care.
I’m just a few weeks into a tentative RA diagnosis and one week into a 10mg dose of Prednisone. My husband and I have no children, but have been trying. The first RA symptoms flared up two weeks after my second miscarriage. My rheumatologist is offering Prednisone as a safe option for this period between successful conception and birth, with the plan to put me on DMARDs from there. But, I’m wondering if this is a potentially self-destructive path. Am I wasting away that small window of time after early diagnosis to attack the most damaging effects of RA by prioritizing childbearing?
Leia, this is a very difficult question. If you Google search “very early” treatment of Rheumatoid Arthritis, you will find some fascinating studies right now. They are trying to find out how early they can take the risk to give dmards to “prevent” the RA from going full blown. If I could go back in time, I always say I would take them. Of course, that might mean I don’t have these 5 children…
I’m sure you have been told that pregnancy does usually cause a remission. Some women go back on medicine right away as you mention. I also know several who have taken Biologics during pregnancy – there are studies being done – but no conclusions set yet.
My advice is not scientific: I’d pray that you do the right thing. Get the best information you can. And do what you think is best. Then, trust that God will work it out. That’s the best we can do.
Kelly
Was taking 15 mg of predisone day with 4 methotrexate a week I am hurting so bad in my wrist and hands I cant shake hands which is hard when your trying to find a job.
hi i was diagnosed 15 months ago with zero -negative rhumatoid artharits.i go on and off predisone i start at 20, 1hen 15,then 10 then 5, ive done this about 9 times now since being diagnosed,it helps heaps,im also on plaquelin wich seems to do nothingfor me
I’m very late to this thread, but this info may benefit someone. I was on prednisone for about 5 years, 5 to 15 mg. It sent my anxiety and rage through the roof. Felt like I was constantly hanging from the ceiling by my fingernails.
I then switched to Medrol, methylpredisolone. Started at 5mg. now at 10 due to a flare. It doesn’t have quite as bad mental side effects as regular prednisone. But close to 10 year on any steroid will hurt. Combinied with a bad case of celiac disease and premature menopause (age 31) my ribs now break from coughing, I’m up to 11 fractures now, in 2 years.
I do get good treatment, but only when I can get to Mayo, about once a year. I thank god, for my rheumatologist there, because he gets me and my black sense of humor about the whole process of a train wreck of an immune system, his description, not mine.
Handle steroids with great care. I’m afraid I’ll never be free of them and they are combined with Humira and Arava.
Hey Nanc :chic:
You are not very late. We often get comments that are months apart. I love your sense of humor.
Can you describe for others why you will “never be free” of steroids?
I was given prednisone when all else failed, was bed ridden for 2years then PREDNISONE was introduced @ 10 mgs work magic for ME… back on my feet the first week..I read all about it knew what I was in for,MOSTLY WEIGHT GAIN ,but at that point i didn’t care I just wanted ME back. well 25 years have past ,tried every new drug on the market.nothing worked like PRED..SO i still take it..on the lowest dose possible..tried ORENCIA for 8 mos only to b told ” CAN’T GIVE YOU THIS ANYMORE” WOW!! what a shock after8mos of hard work getting down to 5mg of pred & 🙁 12lbs lighter I get told this.doc was losing money..!!HA!
Roxie, When you told me your story before it made me very sad. Orencia is a unique drug (that blocks T cells) and I wish your doc would have found another facility to administer it instead of just having you switch to a TNF blocker which works differently. It is hard enough to find the right med to treat RA. Roxie, you are a warrior to fight these many years!
Kelly-I was grateful for Prednisone during my 2nd pregnancy, as it was the only drug considered safe to use, to get me through. It also, was the only thing I could tolerate when I had pericarditis , and pleurisy. In certain situations, it is a real life-saver. A double-edge sword, for sure. Right now, I take 10mg daily, with a SLOW taper planned, once I’m stable on a biologic. I’m also on methotrexate. I WISH I could tolerate NSAIDS. Wouldn’t it be great if scientists could figure out how to retain Prednisone’s benefits while eliminating the side-effects….
Julie, the guy that gets that formula is gonna be rich & famous forever. If cortisone got the Nobel prize, then what would that get?! I agree with you and for many reasons, it IS a miracle drug. It’s exciting that they are still trying to find new ways to use it and new ways to modify it even.
I have learned that different physicians use prednisone in different ways. As a retired allergist, we used prednisone mainly as a burst. Having developed RA after retiring, I was coming off a burst and seeing the Rheumy. He said to reduce the prednisone. I volunteered how an allergist would do it – he shook his head and said “NO, we do it differently!” To make a long story short, I have been on 7 mg of prednisone daily for two years. I go up or down 1 mg at a time! I have new respect for an old medication! I use the lowest dose possible to keep me functional! It is like an herb – a little goes a long way to make a difference!
Thank you Barbara. Good insights. I have also talked to RA docs who vary in their methods & philosphies. Great point. Do you need it daily even w/dmards, then?
I have been on Prednisone for over 10 years and have had no adverse effects that I know of. No weight gain and pain is minimal. I would be interested in other theories.
Thanks for sharing, Jean. It’s good to hear a good experience. It seems to affect people differenctly Have you been at a high or low dose?
Hi Kelly, I’ve been on a low dose of Prednisone 10mg for 23 years without any bad side effects. Everytime I’ve tried to go below 10mg I just seized up and every joint was sore to the touch. When I first started with R/A I was on 50mg for a good 6 months, plus MTX which wasn’t approved back then I think:-( plus of course good old pain pills.
Hopefully this Humira will help and I can drop some pills. Have a great day. Love Barb
Hi Barb. Yes, I was just saying there are people like that – using it safely w/out problems. Thanks for giving that balance to the stories. 23 years is a long time! Are your eyes fine?
I have just been put on 20mg daily that was initiated with an extra 20mg intramuscular shot.
I have been on 3 week tapers before starting at 15mg but the last one didn’t give me the releif at 15mg that I’d previously had so I’m guessing that’s why I’m up to 20mg now.
My rheumy wants me to stay on this until I start Humira (hopefully in the next 2 weeks) I think then she will want to taper again.
My problem is my RA is not controlled at all. My most recent taper ended and I had a massive flare. I took a 3 day prednisone ‘burst’ at 20/10/5 then 36 hrs after I took the last dose I had an even worse flare. I was unable to walk. I could stand but I could not go from a sitting to standing position without being lifted. All my joints except
my neck, hips and spine were in full flare. My husband
and I hung on through the night and then with the use of a hand truck he got me out to our vehicle and off to the doctor. Within about 6 hours from getting the shot and taking orally 20mg I started feeling relief. I am now writing this from work so it is truly a miracle drug for me as just over 24 hours ago I had to be wheeled out to our vehicle on a shiny red hand truck. Now I’m back at work, feeling minimal pain and walking fairly easily.
I dread the short and long term side effects, but I’m on 20mg methotrexate and it will not control my RA. Hopefully Humira will give me some relief.
Lisa, I will hope with you that the Humira will help. 25mg of mtx does not control mine either. It only cuts it down some.
The mtx could also be increased, depending on how much you weigh. The highest dose I have seen w/ RA is 35 mg. I was quite shocked since my doc said 30 is highest, and only if body mass was high enough for it.
Good luck. :yes:
Hi, Just found your group and site today.You seem like a nice community.
I was on prednisone for short periods for asthma in the past. Then I got RA . The Dr put me on a 2mg dose which relieved my symptoms almost completely. Gradually, I needed higher and higher doses. It’s been about 13 yrs with doses ranging from 10-60 mg. When the has to raise the dose, I would feel wonderful. Able to think clearer,
more energenic,dream differently. But it would ware away.
Got many side effects though…. moon face, weight gain at first, but then lost it..huge belly even now. thin skin…brusing…glaucoma…osteoporosis. Thank God I have none of the psychological effects. (I don’t think. LOL)
Sometimes it is very hard to tell if it is the RA or the drugs that I am on that have caused all the side effects.
I’ve had many shots. Sometimes they work, and sometiime nothing.
All during this time, we have tried all the other drugs as they came out on the market. Nothing touched it except the latest one I’ve tried -Rituxin-which has had some effect, but dangerous side effects. My family Dr forbids me from taking DMARDS. Too much chance of spontanious bleeding. It gave me ank ulcer in the past.
I have been working on reducing the prenisone dose for the last 2 yrs. I’m down to 6 mg and hope to go lower if Rituxin continues to work.
But quality of life is important. I’m 58. My life has been stripped away! I’ve said, if i contine to live to old age
with this,I’ll up the prednisone and enjoy my last years.
As you can see, I am not to optomistic about cures and pain relief. I hope I’m wrong
Nice to meet you Linda. Glad you found us. I hope the Rituxan works!
Did you mean your family doc forbids you NSAIDs because of bleeding?
Hi, I’m one of the long-term prednisone takers–at least 25-30 years, at a low dose, mostly 5 mg. daily. Never had any immediate problems. Had experienced a moon face and weight gain and mood changes with daily self-injections of ACTH decades before, but never with prednisone. One rheumy told me it just replaces the cortisol and other hormones my body would make if my adrenals weren’t exhausted by the disease (54 years of it). Yes, I had cataracts, which were easily removed, and now I have osteoporosis, but I’m of an age ( 77) to get both for other reasons, too, plus my Celiac disease causes osteoporosis, too. I expect to be on a maintenance dose for the rest of my life, and I’m okay with that..
My current rheumy would like me to be off it, but I expect to be on 5 mg. for the rest of my life–don’t think I’d have the energy to get out of bed without it–it’s hard enough as it is.
I’ve been surprised how many are like you, Lyn, with long-term use. At least it mostly low dose. You’ve out lived many others w/ it & are quite a warrior.
Sorry, I sort of repeated myself ’cause part of the long-winded message was hidden as I typed–senility is not one of my problems–YET!
I just found your website, Thank-you, lots of good info. I have been using prednisone for 9 yrs. Initially it was off and on.For the last few years I’ve been on 6-30mg. per day. I have gained 50 lbs.,but the worst of it is the broken bones. 14 months ago I broke a vertibrea and 3 months later 4 ribs. I decided to wean myself off the prednisone which I did slowly, after 4 months I was off all the prednisone, but very sick, I thought I had the flu and after 5 days of vomiting, not able to lift my head off a pillow,and every joint in my body flared up, My husband took me to the ER. They gave me nausea and pain meds and sent me on my way telling me to see my PC on Monday. To make a long story short, nobody said anything about adreinal failure and I think I was slowly dying for the next month. One day I put myself back on 15 mg. of prednisone and within 10hrs. I was eating and euphorically well. I am prednisone dependant as my adrenal gland does notproduce cortisol. I am being treated for osteoporosis(I’ve broken nine ribs,a toe,a vertibrea,and have multiple fractures in both feet) and was told today to not even try to lower the dose of my prednisone as it could be very dangerous. They say predisone is not addictive but I say it is.
Thirty years ago my husband was on massive amounts of prednisone for ulcerative colitis. He looked like the dough boy, had cataracts and osteoporosis at age 35. Fortunately, he was young enough to rebuild calcium, and cataract surgery was successful. A gastroenterologist has told me that back then prednisone was the best they could offer.
I was reading a magazine one day and found an ad for test subjects for a new drug. He got into the test, got the drug for free, it was approved and he’s been on it for 30 years and hasn’t needed prednisone since.
Flash forward to now, I take 7.5mg per day and I feel much better than I did on methotrexate. I was supposed to have hand surgery over 2 years ago but thanks to prednisone and night time braces I haven’t needed it. I do have sugar cravings, but I don’t know if that’s prednisone or not. I’m uncomfortable on large dosages of prednisone, but 7.5 is working great for me.
Lana, Thanks for your story. Does your doctor say that prednisone is slowing the erosions of RA?
My father and his sister both began with RA around the same time in 1960. Although sero-negative, my father, who worked furiously to stay strong and keep moving, was unable to walk within 2 years. The first rheumy that saw him sent a letter to Daddy’s internal med. MD and said all labs were normal and the only treatment he needed was “sugar pills.” Daddy’s internal med. MD treated Daddy with Cortisone, Gold, and other treatments of the day including huge numbers of Bufferin tabs/day. When the MD was telling Daddy he couldn’t stop the Cortisone, that he’d be on it for life, Daddy said sure I can! He never took another one. Luckily he lived through stopping it like that and it may have been good, though painful, in the long run with Cortisone so dangerous in the 60’s.
In November, I realized that I have RA the first day when I awakened and both hands and feet were painful, swollen, and stiff in the morning. I got an appointment with a new Rheumy in town. He did blood work, no x-rays for baseline. He told me he’d seen worse joints! (I’d had symptoms for 1 week at the time!) “It sounds like RA and you do have a family hx.” He suggested that we could start prednisone. I told him I wasn’t crazy about taking meds. I am a cardiac RN and at the time had little knowledge treating early RA symptoms with prednisone. (He knew, by the way, that I had a positive PPD in the early 80’s with inadequate INH treatment that would make Biologics contraindicated but he did nothing to look further into that.) As the months passed, I started having to take lots of Ibuprofen. He saw me again in Jan and April. In early June, I got to the point I couldn’t bend my fingers at all in the AM and couldn’t get into bed using arms or hands-just had to fall in. When my husband “took the cover” during the night, I was unable to pull it back toward me. Needless to say, my work at the heart cath lab required tasks that were increasingly difficult to impossible. You can imagine that wearing a lead apron was fun! One morning I woke and my knees, wrists, and elbows were swollen, warm, and painful. I called my rheumy to move up my appt. It was early June; the appt. was for late July. “Nope, you’ll have to wait.” I was told that 5 times over the next 2 weeks. The cardiologists where I work told me to go to my internal med. MD and meanwhile they did a consult for another rheumy. whom they respect. My MD put me on Prednisone to help me live until my appt. with the new rheumy 1 1/2 months later! I took 60mg for 2 days, 40mg for 2 days, and then stayed on 20mg for the rest of the time. It was a miracle in that I became able to get into bed, grasp cover, do more at work, and was euphoric. I knew that the high energy it gave me couldn’t be good for my cardiovascular system. When I saw the new Rheumy, she was not pleased with my being on this dose of Pred. She said, “We don’t treat this like this!” She told me that NONE of her RA patients is on more than 10mg/day. She decreased my dosage from 20 to 15 in 1 week and then to 10 the next week. I hurt so badly when I went in for the next appt. after those 2 weeks. They gave me a couple of papers to fill out in the waiting room and tears poured down my face as I wrote with my painful hands. My appt. was for 11:45. The rheumy walked into the exam room at 2:15. Her office closes at 12 on Friday so it was late for her. During the appointment she looked at me and said, “You look distraught!” Wow! She talked with me about starting Methotrexate and backing off the Pred. as I can. (I went back to 12.5 and am now at 11.5.) She said she found it “hard to believe” that my father could have had Felty’s syndrome or “other things” and be sero-negative. I told her that I have his records if she’d like to see them. 🙁 She added that she expects my prognosis to be good since I have been sero-negative! Had I not seen my sero-negative relatives, I might be able to get excited with her prediction! Yes, this is about my prednison therapy but I felt that I needed to tell a little of my background. The Prednisone made me feel way to excited-euphoric-until I got down to 15mg/day. Probably that is as high as I should ever go. My BP has always been low and the Pred. has raised it. 12.5 has worked well. My rheumy told me “long term” Prednisone at high levels isn’t good. I asked how she defines long-term and was told “3 months!” There is still pain and stiffness, but I can perform tasks. I sing in an 11-piece band doing 50’s and 60’s R & B and Doo Wop. Without Prednisone, I am pretty sure that my energy level wouldn’t allow me to dance around up there and belt out those tunes. I have to concentrate really hard. My face has gotten round and in these 3 months, I have gained 3 lbs. (It may all be in my face! 😀 My face was longish and thin so I’m trying to convince myself that this is a good look for me! I will continue to try to get the dosage of daily Prednisone decreased as I know it is better for me. There is still a gray area there, though, that makes me wonder if having decreased inflammation, even with long-term low dose Prednisone, is better than having increased inflammation that may destroy many things, including my CV system. Meanwhile, my Rheumy has sent me to a Pulmonologist that would like for me to be off Methotrexate for 6 to 9 months! to take Rifampin to get rid of the dormant TB so that I might take a biologic. I asked the Pulm. MD to talk with my rheumy about the options and he told me to “just get back with him” on whatever we decide-call his nurse and leave a message! If they take me off Methotrexate, I’ll be back on only Prednisone and while it allowed me to do things and do them without as much pain, I couldn’t wear a watch or see bones in my elbows or knees until a few days on Methotrexate. So many questions. . so few answers. It’s a journey. God bless all of us!
Margery, there is so much here. We can learn a lot from your story. Thank you.
😀 Are there any recordings online of your Doo Wop?
Our band’s website is http://www.heartnsoulband.org. We are a 501 (c)3 organization – all money goes to charities. I’m hoping we will channel some to help with RA research! Our website needs some updating but my Facebook profile picture is from our job last Friday, the 17th. Diagnosed with RA in the last 10 months, the majority of the photos on the band website were before my diagnosis.
Thanks for all you do, Kelly!
Margery
Wow. Thanks, Margery!! I’ll go ck it out.
My site isn’t 501c3, but takes donations. An official charity for RA I do know well is Arthritis Introspective
I love your music! Do you have a Facebook page too?
Great subject, Kelly.
My initial diagnosis in 2002 was polymyalgia rheumatica. Prednisone is the drug of choice for PMR. My initial dose was 20mg for 5 days, then to 15mg, then to 10mg. I felt that I got my life back. It was a miracle. My MD was doing routine labs on me to check my CRP and sed rate. Apparently he did RF testing also. His nurse called me in 2005 and told me my RF factor was positive and that my rheumy wanted me to go on methotrexate. After starting MTHX he wanted to wean me off prednisone. I titrated down to the 4mg I am on today. I’ve been on 4mg daily now for 4 years. I love my prednisone, it let’s me have a life. If I have a flare I will self-medicate with 10mg for a day or two, then 8, 6 and back to 4. My rheumy wants me below 5 mg a day. After I started prednisone I gained weight, got a round face and fat belly. People told me I couldn’t lose weight on prednisone. However, I have done it. Since January I’ve lost 40 pounds, gotten my face back, and feel better overall. Lastly, I started Rituxan in July and I believe it is starting to work. I’ve felt better lately and hope to drop to 3mg soon.
Thanks for the great comment, Phyllis. You should be so proud of yourself for fighting so hard. I’ve heard it’s very difficult to do. Do you think being on the DMARDs is what helped you to reduce prednisone? Does your doctor think you RA in the beginning?
By the way, I just got a comment on another post – click here – asking about a PMR diagnosis.
Margery, read this recent article abstract:
http://www.ncbi.nlm.nih.gov/pubmed/20843913
HiKelly, I just wanted to comment that I have started to take prednisone 5mg before bed and it has improved my morning stiffness and swelling dramatically. This is because of an article I read about cytokine release peaking at 2am so by the time you take your medicine in the morning it’s too late to have any effect.I hope people realise the significancy of this.
Thanks, Phil. Good to hear that idea. I will be looking for more on that.
Hi Kelly in response to Chelsea’s comment below, there is a new drug available in Europe called Lodotra which is basically 5mg of Prednisone with a coating that takes 4hours to release the steroid ingredient. You take this at 10pm meaning the drug is released at 2am which is the peak time of cytokine production.
Phil, yes, I didn’t remember a name, but I had heard something about that. Thanks for help.
I took mine at night for several years. It truly does help with the stiffness in the morning. I know someone was looking at some kind of “slow release” prednisone or something along those lines but I don’t know what’s happening with that. Most docs will advise to take it in the AM because that’s when the body would normally produce it, but Phil may have a point about which AM hour that is! I honestly can recall right now why I switched mine back to morning, but I believe it may have been because I was considering weaning off of it and potentially concerned about adrenal insufficiency for which I might need testing, and that testing might not be accurate if I was taking it in the PM before bed. Or something like that. I do also think that rheumy kept forgetting that I took it at night (even though I reminded quite a bit) and this misled her assessment when I would report my morning stiffness as minimal. I do play around with the timing of my NSAIDs and prednisone and this changes too as my work schedule changes.
It’s good to see all of these post on pred. I have been going through a really bad flare for quite sometime and now Raynaud’s is in the picture. Unfortunately, the docs won’t touch me with a ten foot pole with the DMARDs because I have notoriously low platelets, WBC and other blood cell abnormalities. Even my hematologists has told me that to do so would be disatrous for me. Sooo.. my doctor put me on pred the other day starting with 60mg and every third day reducing by 10mg until I get to 10mg maintainence dose for however long I can tolerate it. I have been on pred in the past for up to two years at a time but it was lower dosage. So, I’m holding my breath;-)
In the past, I did not gain weight and actually had to work harder at keeping my weight up, (I’m normally a little thin) which I know is unusual. I did have alot of thirst and burst of nevousness at times which is tolerable for me. I will say that I was relieved when he prescribed it for the most part because the flares were getting the best of me. The only thing that I don’t like is that he absolutely said no NSAIDs! I have been on really high doses of Aleve for awhile and I will admit that I have been still taking some (just a little). Aleve has always worked best for me outside of Ibuprofen. My doc seem convinced that I am destined to develope a bleeding ulcer after so many years of this. Who knows…LOL
Are any of the rest of you taking NSAIDs with the pred? I make sure that I do have something in my stomach which is common sense. Also, I am seeing that some take their pred in the am and some pm. I’m trying to decide which will be best once I am down to the one 10mg per day. I must say that I can already see a little difference and am encouraged. Thanks for all of your input and to you Kelly for this wonderful site! I am mostly a lurker but I do also keep up on FB and Twitter:-)
Hi Rachel,
I follow you on Twitter too 😀
Bless your heart. I hope this pred does the trick for you. There are several pred posts you’ll want to check & see what comments say too. Click where it says Tags list at page top & then click on prednisone.
My doc has me split up pred am and pm and also take with food only. I did take it w/NSAIDs & doc knew it. Like you, my NSAID dose is high & I’d like to get it down if I could find some relief. It has its risks too.
I had to do a prednisone taper recently when having pleuritic chest pain. My doc said to temporarily stop the motrin I had been taking- long term. I’ll be honest, I didn’t miss it. I thought she was crazy for telling me to not take it at all, but if you’re taking a high dose of prednisone (and you are), I bet you will feel good for that short time at least – even without the NSAIDs… best of luck! [I was taking 30 mg for 5 days, 25 for 5 days, etc etc]
Also, doc put me on prilosec 20 mg while I’m taking motrin with a lower dose of prednisone…. it’s supposed to help protect my stomach?? Idk… can’t hurt, right?
Thanks for letting me know I am not the only one who can’t take RA meds. I am also taking tramadol. I take the prednisone in the am because it does interfere with my sleep. When I have a flare and take high doses of prednisone I don’t sleep much as all until it is reduced.