Prednisone Side Effects
Can prednisone side effects occur even with low doses?
This is the third post in a series about approaches to the use of prednisone for Rheumatoid Arthritis. Please read the first post, Prednisone Dosage for Rheumatoid Arthritis, here at this link. Do prednisone side effects occur even at lower dosages? How quickly do they occur? Do doctors and patients find it so effective that prednisone side effects are worth the risk?
Note: these are very brief excerpts. The linked original articles also include numerous footnotes.
- The British Medical Journal report describes the reassessment of prednisone that “began during the 1980s, based on recognition of severe long-term outcomes of RA and clinical experience indicating relatively limited toxicity associated with low doses of glucocorticoids (like prednisone) … Reports indicating disease modification even with low doses of prednisone or prednisolone of 5–7.5 mg/day are of particular interest, as doses of 10 mg/day are associated with adverse outcomes including bone loss and higher mortality rates… Long-term safety remains of concern. Higher mortality rates have been associated with the use of prednisone in an earlier cohort of patients seen by the senior author at Vanderbilt University and by others.”
- According to the Journal of Rheumatology article, “Recent reports of longterm prednisone use suggest that even exposures of less than 5 mg a day may be associated with potentially severe outcomes.” Surprising: “Retrospective observational studies, however, suggest that excess adverse events (e.g., fractures) are present after as few as 3 months.”
- A study described in Musculoskeletal Report of doses of prednisone less than 5 mg /day found they were associated with an increased risk of pneumonia. “After adjustment for covariates, prednisone use conferred a 70% increased risk of pneumonia hospitalization.”
- One study reported in Arthritis Research & Therapy suggests a possible “catch 22” with prednisone effects. As I mentioned in part 2 of this series, prednisone may slow bone erosions in early RA as long as its use is continued. “We suggest that glucocorticoids may protect against the negative effects on bone primarily caused by the rheumatoid disease, a suggestion supported by the rapid decrease in 1CTP in the P-group.” The catch? Prednisone can suppress bone synthesis, leading to bone loss. “On the other hand, the systemic inflammatory consequences on bone could not be prevented because of suppression of bone synthesis. Bone loss in the spine was more pronounced in postmenopausal women treated with glucocorticoids.”
Sound frightening? These quotes are from the same group of articles which I read exploring the importance of the use of the long term low dose prednisone. I did not go find articles against the use of prednisone that paint the worst possible picture for the purpose of scaring patients – I’m sure those statements are out there. It is interesting that some comparable lists of side effects tend to be less frightening perhaps because the drugs are so familiar – such as birth control pills.
Have you experienced prednisone side effects?
The prednisone side effects page at Drugs.com says the most common are “difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.” Scroll down that page to “for the Professional” and see the exhaustive list. Which prednisone side effects have you experienced?
Recommended reading:
- Prednisone Dosage for Rheumatoid Arthritis
- Low-dose Prednisone in Early Rheumatoid Arthritis
- Prednisone and Rheumatoid Arthritis
- Comparing Risks and Benefits of Rheumatoid Arthritis Medicines
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Hi Kelly- I did look through the Newly Diagnosed map, and it was very helpful. Thanks again for your service to the RA community! When I have the hypoglycemic reactions, I get very weak, shaky, dizzy, disoriented, and hungry. Usually food/sugar will stop the reaction in about 10-15 minutes. I am quite certain that this is prednisone induced. Thanks again.
Ugh. That would make me call the doc.
hi,
i m not so sure if it is a side effects or not..
but i have a round face…
i m not given prednisolone or its any brother sister for too long…..its just during a flare fr a month n a half.
wat i notice is that m face changes a lot.smtimes its extra puffy…smtimes lesser .so dnt know exactly..
but extra fat i hv on my body is definitely bcoz of this..
my arms are nt so fat but the region around my belly is too strange…
mood changes a lot..smtimes i feel its bcoz of mtx too…i talk to myself a lot…….lol
i hv to take but i m afraid to hv these meds..
hey, y dnt u write on mtx n its effect on liver enzymes?
Hi Rachel, yes, the round face is likely from prednisone. The methotrexate pages have a section on side effects which discusses the liver issue: click here. Are you having trouble with that?
thats y i m having excessive fatigue even if hb is almost normal ….doc says ur ra is fine .”its just fatigue”
but never had such a fatigue….in this fatigue,my muscles aches a lot…especially of neck….
i m too tired….
i aspire to study medicine…..but these medicines are making obstacle in it…lol
i think doc knows its bcoz of mtx,thats y he underestimate my symptoms…..n just tell the reason”fatigue” but not the solution….if solution,he says exercise n rest too..
my liver enzymes SGPT and SGOT hv just reached borderline….
so where i hv my blood drawn after 3 months….thsi time i will hv next month again….. 😛
n i already sweat a lot….
my body i warmer than everybody in winters n colder than anybody in summers….. 😕
I have been on 4 mg of prednisolone for years with occasional dose packs and shots for flares. I have a really round face and lots of chins :-/ Also lots of belly fat. I am finishing a pred taper and sweat like crazy. But if the choice is to move vs not move, I pick move!
That is important, isn’t it Lisa? Were you surprised you had that side effect with that low dose?
My RD said it builds up over the years… Sometimes I think of shopping for maternity clothes!
Oh and my 86 year old Mom just finished a dose pack an commented how the wrinkles on her face disappeared for a couple of days — one dose pack!
Hi Lisa,
I feel like I look pregnant too! This look was wonderful the 5 times I had a precious baby moving about inside me, but it just looks gross now! Like you, I choose to move!
Thanks for sharing,
Connie Garcia
Even the six-day burst my doc uses to suppress flares really messes with my emotions. It’s like PMS with an emphasis on crying. Interestingly I didn’t have any side effects from a Kenalog injection. But since I have a strong family history of osteoporosis, I’m trying to avoid steroids as much as possible in spite of the fact that in terms of symptom suppression they are pure magic for me. It’s always a balancing act, isn’t it?
Yes, weighing risks and benefits, Kris. What kind of dose gives you those side effects?
That was with a six (or maybe 8?) day burst starting at 40 mg and tapering–so not low dose. But it was unnerving enough to make me avoid it whenever I can. My dad had a similar reaction years ago when he took it for his then-undiagnosed RA–such bad depression that he had suicidal ideation. I’ll have to ask him whether it was lower dose or a burst. My friend, who’s a nurse on a general medical floor at a hospital, said this is actually really common.
my daughter has been on prednisone for a wicked cough that isnt going away and last night she says to me. MOMMMY IM SO HOT make it go away…. she had her first hot flash POOR BABY think its time to dose down.. shes only 9 she shouldnt have to deal with those side effects…i told her she had her own personal summer..
Awww, Shannon. That is hard. What did you do? Would a milkshake help? The only time I had to give that to my child, he was a baby – he was beside himself, but he coulndn’t tell me why. Now I know more about it.
Thanks again, Kelly, for all the great information. I struggle with whether or not to take prednisone because there is a history of osteoporosis in my family yet I feel so much better when I am on it. I can actually take my dog for a walk and work a little in my garden all of which I can’t do without the prednisone. I am on mtx and enbrel and the dr is still trying to lower my dose from 10mg to 5 mg a day but each time we lower the pred. I swell up again. I do have the sweats but when you have had PMS as long as I had it you kinda get use to changing clothes ALOT. Thanks again for everything.
Haha. I understand that. Have you tried lowering it 1 mg at a time?
I think I might just try that-sounds like a good idea. Thanks
i get the sweats, insomnia and dizziness. i’ve been on 5mg/day for yrs, increasing temporarily for flares. Last flare took 50mg/day for over a month, before I could start decreasing. Its taken me 5 mos. to get it to 10mg. Still trying to get back to the 5…1mg at a time 🙁 …i hate it but it works good on flares for me. what else can you take for bad flares?? Its all I’ve ever been given other than tramadol which doesn’t touch a flare!
I don’t know Cindy. It’s very hard to make it with just the NDSAIDs – yes it barely touches it. Have you asked your doc that great question?
Kristi,
I got off of preds eventually and I feel like you have to go really slow. I’d say take 10mg and 7.5 on alternate days. Then go a couple weeks on 7.5 and then a couple weeks alternating 7.5 and 5.0 and then go with 5.0 for a couple weeks. And from then on do the same pattern with 1mg changes and even splitting those to 0.5 near the end. Going too fast and you just crash and have to start over. From 5 to 0 took me a whole year.
Great ideas Jay. Thanks! Do you think it was the RA itself that made it so hard or the body’s dependency on the medicine?
When I first got on prednisone I was STARVING!! I was on 20 mg for a month, then got off for two weeks to have an MRI, got back on 20 mg and had no craving at all! Interesting! VERY wired! Read somewhere that a lady who takes too much prednisone wants to alphabetize all the food in her cabinets! I can relate!! : ) Very hard to sleep! I noticed a fever pattern, but do not know from which med this could be. And my shins hurt, a lot. When I mentioned this to my rheumi she, said no, that is not RA, I am putting you on Actenol. So I have been on 20 mg since February, with using 20 mg for bouts of flares and to initially start calming things down. Still on 15 mg daily with no coming down for at least another few months. : ( Just got my hair cut yesterday to hide/blend in my “moon face”. I tell people you would not believe that I have ONLY gained 5 pounds since February! I don’t recognize myself sometimes in the mirror! : ( That is disheartening!! BUT, at least I can walk!! : ) Wish I could get off the prednisone, yet I can see why they call it a miracle drug!
Hi Jackie, lol’ed at the the alphabetizing! I’m very tired – I can’t remember – are you taking a dmard yet too? Did your doc say how long it would be before you need the pred less?
taking 25mg methotrexate and humira too. I am tired, but 20mg of prednisone does make me not need a nap in the afternoon!! : ) and without my sleeping pills, I know I would lie awake at night just “thinking/daydreaming”! : ) My doctor says at least until July 16th on the prednisone. That is my next appointment with her, so we will see on that day! I am SUPPOSE to still be on 20 mg of pred, but my flare is finally calming down, so I dropped myself back to 15 mg. Less is more! : )
Hey, good for you. 😀
I had a bone density test last fall because I’ve been on prednisone for almost 3 years now and my bones are in good shape. I take a calcium supplement on the advise of both my RA doc and my OB/GYN and I eat (and drink) a couple of dairy products a day.
Good news, Rhonda. I hope that with the pred you can probably exercise / walk a little bit more & hopefully that helps.
I haven’t been on prednisone for RA, just short courses occasionally for respiratory infections. While I rarely needed more than 4 hours of sleep on it, I have to say that it was a wonderfully even sleeplessness on it, not speedy like some other medications might do. It was great for doing family genealogy research online when I was awake and alert until 4AM. I even managed to trace my husband’s relatives in 19th century British India. Far more engaging and useful than alphabetizing the spices!
Very cute, Carol. Were you ever exhausted afterwards though?
Kelly, if I can be so bold to invite people to see my 6-minute video called “Side Effects” (from me being on prednisone.) Despite it all it WILL make you laugh – at least we are all in it together! linkI’d love your feedback too in the comments ares of the video. in just 3 weeks or so it’s had over 1200 views.
Yes, saw it when you posted it on FB. Good luck.
So true!!!!
When I was first diagnosed w/ RA (8-plus years ago, now, yikes), my RD put me on low dose methylprednisone to get the monster under control. Low dose was less than 10 mg per day. His theory was, “I can’t determine which other meds will help you until you’re not in a monster flare”. I guess it worked.
I will say pred was a wonder drug in the sense that within 2 or 3 days, I felt like Wonder Woman. Trouble is, I looked like the Michelin Tire Man. Literally INSTANTLY, I gained 15 pounds (that I didn’t need). After having been post-menstruation for over 5 years, with no menopause symptoms (another long and boring medical issue, but trust me, until RA I’d breezed through menopause), I suddenly and almost immediately was thrust into change-o-life hell.
Hot flashes that were insane. Mood swings that had me hysterically laughing one second, and manically crying the next, and then kicking the dog (figuratively) the next and so angry I could’ve committed assault the next. It was wild. The mood swings were the worst, and the scariest. I literally thought I was going insane because I could NOT control my emotions. Could not. I remember sitting in my office one day at work, and sobbing, SOBBING, because my printer jammed……
Oh, yeah. And the facial hair. That was lovely too. And *that* has never gone away, nor have the hot flashes. Mercifully, the emotional roller coaster has leveled.
But I do think, if I’d stayed on pred for much longer, I’d have been arrested for road rage or for punching out a rude grocery clerk. Thankfully, my RD swore to me he never kept any patients on pred longer than 6 months, and he didn’t for me.
It’s a silver bullet for sure, but for me, I’m not willing to deal with the side effects, which were almost as debilitating as the RA.
Wow Roberta, what an experience. So I guess he too it off when the dmards kicked in? I hope they work for you. Wouldn’t it be great if there were a way to tell how it would affect a particular patient first?
I was just diagnosed a month ago, and I am currently on 10 mg as a bridge therapy until sulphasalazine takes effect. I started on 15 and have tapered down to 10. The worst side effect for me is the insomnia. I feel like I haven’t really slept in days, and strangely enough I don’t feel sleep deprivation. It’s almost like my body does not need sleep on this drug! I also think the pred has caused a sort of hypoglycemic reaction on numerous occasions, and this is really scary.
Marie, I hope you’ll be careful & tell your doc about those reactions. What happened when you had the reaction?
Have you read through the Newly Diagnosed Map yet? There may be some info there to help you. Look at the top menu.
When I take Prednisone the RA feels better but I do experience: difficulty sleeping, nervousnes/jittery, increased appetite, sweating, moody, irregular heartbeat, fluid retention, menstrual irregularities,weight gain, big round face and I get very red faced. When I wean down and come off I get muscle weakness, Anywhere you lightly touch me it is sore as if someone has punched me everywhere. I try to avoid it but this was a bad flare year, so far I was on prednisone from January til end of March when I had Rituxan infusion and another Rituxan infusion beginning of April. Unfortunately part of the pre-meds with the infusion is a steroid and benadryl IV.
I also take a MTX injection every week. Last year I was ok with the Rituxan but this year I got a sinus infection that will not go away. Did 3 different antibiotics and a prednisone taper pack. Finaly saw a ENT Dr. I am now on 2 different antibiotics for a month along with prednisone for 3 weeks first 4 days at 60 mg. I am on day 2 and already feel like a beached whale!
Such a shame that a drug that really does seem to help is so very bad for you!
Lois, that sounds so frustrating. You’re brave – you do exactly what you’re told – and it gets more complicated – and uncomfortable. You are right that it’s a shame. Let’s hope one day we can have the some of the benefits of it without all the side effects. That would be a real miracle. I hope you are better soon.
Ugh…. I am weaning down from prednisone AGAIN and I hate it. I had to bump up my dose because I got a nasty case of poison ivy in addition to the pain… Blah. My side effects are always the same… puffy face, weight gain, insomnia, bloating, and now my sugar not only goes up after I take it but TANKS (like to 40) in the afternoon. REally scary when it happened the first time. I am back down to ten. Coming off always takes a lot of patience. I have the rebound inflammation, frequent urination (so much fun to pee off ten pounds!!), and even burning and increased joint pain. My doctor says to expect to feel bad for several days after I move my dose down. Sometimes, it could even take a week to go down by 2.5mg. It is a tough drug, and I hate that I need it so much. Thanks so much for posting this… It really was very well researched and I like all the references. I am a nurse so I like to read whatever I can get my hands on.
You’re welcome & thanks for sharing your info Heather – I know it helps others. What kind of nursing do you do?
The first time I tried prednisone was before a family vacation. My Rheumatologist said it was okay to take up to 10mg for less than a month. I used it again for various vacations but it seemed that each time the rebound flare was worse. Then I started getting a UTI each time. The last time I took it my menstrual cycle got so messed up, it really ruined my vacation.
If I was sure that I was doing everything my doctor directed and still was not able to function I would take it again. However, it is definitely a bigger risk than any other option. .
Thanks for sharing your story, Joanne. It does affect people differenty – I hope the docs realize that. I agree it is a greater risk than some of the other treatments. Unfortunately, it also works best for most people. Won’t it be great if they find a way to make it even safer…?
I am a RA suffer for approximately 25 years but have been on and off prednisone for about 6 years.After surgery to two of my fingers last year I made a decision to really get to grips with RA and follow a healthy diet.Prednisone was making me put on wight around my tummy as well as the mood swings and anger etc.I have now gone off prednisone completely and started using a sweetner instead of sugar as well as not eating red meat at all.This has helped significantly and mobility in the mornings are so much easier than before.I am hopng to cut out a few more “culprit”foods by a process of elimination.Will definitely be back with some feedback on my journey.
Good luck to you Ruth. 🙂
I was diagnosed with Systematic Lupus 3 weeks ago. I have been very fortunate to only have the horrible joint inflamation symptom and the positive ANA indicators. I suffered for 4 months thinking it was first a bad case of Carpal Tunnel, but when it finally hit my knees I went to a GP, then to a Rheumatologist. I have been on Metholtrexate 15mg and 40mg(20mg twice daily)of prednisone,for 11 days. I feel like a new woman. All the pain and swelling is gone except for some charlie horse cramping in my hands on occassion. I have tons of energy, yet I have no problems sleeping at night. Its so wonderful to sleep for 6 or 7 hrs at a time and on my side!! I spent months sleeping in 20 min spurts flat on my back. I have had weight loss not gain,(Dr isn’t worried about the weight thing),no moonface,not any symptoms really. Is this a honeymoon period perhaps?? Would I have already experienced side effects from the Predisone?? I realize that 40mg is a high dose, but the Rheum Dr wanted to attack it aggresively. Any thoughts??
Hi Rita. That is wonderful that it has worked for you and not caused the side effects many have. From all I’ve heard, there’s no way to predict whether this honeymoon period would last. Some patients just don’t get bad effects from pred. as others do. Some other side effects are from longer use so it would be too soon to know.
Would be great if you could use it this way whenever you really need it if it will remain a dependable relief during bad flares. Does the doc say how long it is your treatment plan?
Thanks so much for your reply Kelly. I think your site is fantastic, and I am very happy to have found it, even though I am a lupus, not an RA sufferer, but my symptoms are very similiar and its being treated with the same meds. I see the Rheum Dr again in 19 days to check my liver levels etc. I forgot to mention I am also on 1mg of Folic Acid per day. My Prednisone prescrip has 2 refills, so we shall see. I am following your other board about alcohol with Metholtrexate. Very informative. My Rheum said maybe 2 drinks per week. I have been doing maybe 4-6, but never more than 2 in one day, spaced out over a few hours. I also havent had one the day before, the day of or for 2 days after my dosage. I do think its probably an individual thing, and I shall see what my liver tests say. Hopefully there is a happy compromise as I do like to have a drink now and then. Thank you again for the site and the wonderful job you obviously do keeping it going.
Rita
“Bone loss in the spine was more pronounced in postmenopausal women treated with glucocorticoids”
Yup that’s exactly where my bone loss attacked from my use of prednisone (although my last DEXA scan was 3 years ago, so who knows what it is now!!)
It’s a catch 22 Marie: RA causes erosion. Pred can slow that down, but can cause osteoporosis, too.
I’ve suffer from fibromyalgia, and multiple injuries, and a lot of arthritic change, but, yet ,have felt the miracle relief of pred…my last pack after a car accident, made me feel intensely angry, and felt I was fighting violent tendencies. I hope to never use it again, or I will have to be in a straight jacket. Thank you to everyone , this is a wonderful outlet, I watched my Godfather benefit, greatly from about 4 months of use. He never had pain , till a sudden onset in his 60’s, I had to search for a rheumy, to treat him, as his pcp said it was “old age”, it was a miracle for him, and no side effects. for that I am grateful, the miracle side.
Good points Laurie. I was afraid of having that angry feeling and the 1st time I took it I did feel it for a day or so – I even got people to pray for me because I really wanted to give it a good trial. It went away and did not come back – but I know many say they cannot tolerate it.
My RA was not DX for 10 or 11 years b/c I kept being told I was too young to have it,so by the time I was 34, finally I changed docs, and he did a complete blood work and sure enough, RA and it was attacking with a vengeance, which I already knew, I was in so much pain and could barely even function, I saw a top RA doc and he put me on Arava/MTX/Folic Acid and I was having vasculitis in my finger tips so he put me on pred. 20mg twice a day as well. I hated the stuff, I am a slender person and I put on 15 lbs in 2 weeks, it stopped the vasculitis tho and I had been on it for about 4 months, when I had an eye exam and Doc found black spots on my eyes, re-read my info and said get off the pred., it will destroy your eyes and sure enough my left eye is in very bad shape now, the black spots on the right were not as severe and only minimal damage there, so I now I have to wear glasses, my left eye vision is as if I smeared it with vaseline. I didn’t notice if I lost sleep b/c by then I was sleeping very little anyways with all the pain so….the Arava/MTX did not work well, only a few months with little help and back to feeling horrible again, so next I get on Enbrel and it only lasted about 8 months, my top notch Doc got pissed and said I was not taking it right or maybe not even taking it at all! I wondered how much kickback he was getting pushing Enbrel after that attitude. LOL So I changed Docs and now am taking Humira alone, it doesn’t do as much as I would like it to do but better than anything else I have taken, and I feel it is struggling to do as much as it is, I think it will not be long before I either up it to one injection a week instead of every other week or change to another med completely. My RA Doc just DX me with FM and I’m on Lyrica, not crazy about it but it has helped some so gonna see how it goes. Thanks Kelly for what you do here on this site! It’s really great to have someone who actually knows what life with RA is like. Where do I go to ask about a symptom I’m having and if others are as well? Again Thanks, Dolores
Hi Dolores, did you want to ask about a prednisone symptom or something else?
I can’t believe the dr said you didn’t take it right! The Biologics stop working after a while in many patients – it’s not that unusual.
I love this part in the side effects: “exaggerated sense of well-being” <—- I want that one!
My rheum hates prednisone and it wasnt until I called him crying during a full body flare 6 weeks ago that he placed me on a standard dose 10mg dose, and told me it was just for a couple of weeks (um… yea right!) O course I am taking double that dose now, but it is the only way I can possibly be functional. It took about a week for it to kick in and then I felt like a totally new woman! I had used the medrol pack, and kenalog shots before but strangly enough they where not at all effective.
The prednisone does make me very jittery and gives me palpitations it also makes me grind my teeth/bite my lip :/. I also cannot sleep at at unless I take an ambian at night and I have to take the prednisone first thing in the morning. I am very emotional on it also, and I suffer from flushing and sweating. I also eat constantly, which is not like me at all. I have gained 15lbs in 3 weeks, although those closest to me are thrilled about. I will take all of the side effects with a grain of salt for now until the humira and the mxt actually kick in or they find some other magical cocktail. The debilitating pain, fatigue, swelling and stiffness from the RA that affects me from my shoulders down to my fingers, and my knees down to my toes I just cannot cope with. Not as a single mother. I will take quality over quantity anyday!
The thing that worries me about the prednisone is I cannot seam to wean myself off it. I almost managed to wean off 10mg very slowley, but just a few days later I am in a huuge flare again that renders me incapable to work and look after my children and I have to start all over again. I had a terrible full body flare a couple of weeks ago and so started at 30mg and titrated down by 10mg every three days. I was doing very well until I got to 10mg and then another RA flare hit again so I went back to 20mg.
At 30mg I had a moment where I even forgot I had RA! It was just for a couple of hours but it was amazing! Now at 20mg, I really hurt and still am very swollen by the end of the day, but it at least keep the RA monster a little at bay permitting me to work a standard full time job and look after my two young children.
Kelly have you ever looked at the risks/complications/side effects of baby aspirin (81mg)? You would never want to take one again looking at it!
Thanks for all you do sweetheart… I am a massive fan! x
Aimee, I’ll do a blog on aspirin – good idea. I’ve been thinking about it anyway.
Your journey with prednisone is not unusual! Here’s hoping that DMARD makes a difference in your RA so you can use less of it in the future. 🙂
Hi Aimee. You might be trying to taper by too large of a reduction each time. I know typically at higher doses they often taper by big reduction amounts and that’s usually o.k. for lots of patients, but everyone’s sensitivity to prednisone is different. And when you start going below a certain amount (often below 10 or 7.5 mgs for many, but for some it is below 15mgs or 20mgs), then things get worse. Seems like your level may be 20mgs or so. You might try getting separate prescriptions for some 2.5mg and 1mg pills. And get a really good pill cutter than can cut smaller pills without absolutely crushing them to powder. When you taper, try to go by smaller and smaller increments each time, and stay at each level for longer. For some it just takes the body longer to adjust to each new, lower level of prednisone. I am one of those folks. Been on prednisone for over a dozen years. I am down to 2mgs per day. 7.5 mgs is about what the human body makes normally, so it is best to try to get down to that dose or lower if you absolutely have to stay on it.
Hi Aimee,
Boy, do I hear you! I am in the same situation with being unable to wean off prednisone without experiencing a huge flare of pain and weakness. I have decided that unless I am in total remission, I will need to stay on prednisone every day…Bummer but I need to live! The only good thing I have is a great rheumatologist who advises whatever works to keep me active and mobile.
Keep fighting the good fight! We are all in this together!
Connie
Thank you Kelly for the amazing work you put into this website! I am sure that often you must feel you are alone in this effort, but know that we love and support you! We’ve got to stick together in this battle!
Connie Garcia
I have been on prednisone for 3 years now, with the dose ranging between 5-10mg daily. When I started it, I immediately noticed a huge amount of belly fat and round face and weight gain, despite no change in my activity or diet. I also began to have extreme dreams and insomnia and very frequent night sweats. I also become hypoglycemic easily and experience nausea, dizziness and faintness. I attempted to slowly wean off last year. I was able to be prednisone-free for only 11 days. By then I could not walk due to the intense pain. Clearly my disease was much too active to be off the drug. I hate the fat and other effects, but I need to have a life!
As an allergist, I have used prednisone alot over the years, yet I never used it the way rheumys do. Since starting on daily prednisone three years ago, I now have a much healthier respect for the drug than I ever had. I am amazed that an increase or decrease of 1 mg can have such an influence on how one’s body works! Yes, I try to get off the prednisone, but each time that I am doing well and then try to decrease it, my symptoms flare so that I realize how much it is doing for me.
Ah, that is the question. What IS it doing for us? Is it just controling pain and swelling and stiffness, or is it also helping retard/slow damage to some extent? My rheumy made the statement that NSAIDs (of course) and prednisone are just for symptoms. I’ve seen some evidence otherwise for prednisone. I’m not trained in research so cannot say how strong those studies were though and would have to go dig them up to see what extent they might have thought it helped to retard damage. All we know as patients though is that it helps us live ‘better’ in the immediate term!
Hello,
I have been on prednisilone (on and off for 9 months) – the break was self inflicted and not per doc recommendation. anyhow, I noticed my periods were more painful, delayed and definitely had many more mood swings and depressions symptoms coupled with PMS during this time. The weight gain is very disappointing and doing regular weights and an increased cardio routine didnt help (am borderline obese + hypothyroid).
can anyone else please share their experience and ways to overcome some of the side effects pls?
Hi Kelly,
My doctor prescribed 10mg/day of prednisone for 2-4 weeks, then drop to 5mg/day, to try to get the Enbrel to work again. It’s day 17 at 10mg/day and I feel horrible – vertigo, nausea, indigestion. Last night I wondered if I were having a heart attack or something else more serious than side effects! But I noticed I felt a lot better this morning before I took the pills.
Of course, it’s Saturday and there’s no one available to take my call for help. I don’t know if I should take 5mg tomorrow or stop it altogether. It has decreased the pain but I can’t go about feeling like I’m going to keel over!
I’m sure someone else has had this dilemma and I’d love to hear what the answer was, I have to decide what to do until I can reach the doctor on Monday…
Thanks for this website, it’s a great source of comfort!
I have been taking 5mg. Daily since Aug. 16. I started Placquinel 200mg daily Sept. 16. With instructions to increase to 400mg.after two weeks and to cut prednisone down to 2.5 mg. after two weeks at half strength I began to feel as if I had acid reflux, the top of my left foot hurt, and I woke up in the night feeling as if I had pressure on my chest. Very scary! Also, for two days I had to go back to bed. I felt like I was having a flare. My Rhuemy had me decrease Placquinel and increase prednisone back to 5m. That worked. She said to go back to 400mg of Placquinel and then decrease prednisone in half as soon as I felt better. This is day four and this morning I felt that pressure on my chest but not as bad. Time will tell. What I don’t understand is why they give prednisone as opposed to a shot of Depo-Medrol. After my first flare I was given a shot of Depo-Medrol and it lasted 18 months. It is my understanding that does not affect your bones in the way oral prednisone does.
Hello Sally,
I’m new to this forum and do not see any follow-on responses to your prednisone and plaqunil dosages. Your journey sounds just like mine. I hope you have been able to stabilize your meds and disease.
I was diagnosed with RA 25 years ago. During those years, I have taken Plaquenil, various NSAIDS, methotrexate, sulfasaladine, Humiera, Enbrel, Simponi, prednisone, and Orencia. All have worked to one extent or another, Enbrel being the most effective until I developed allergies to all TNF inhibitors. Currently, I take Orencia, but I find I must occasionally supplement it with prednisone, currently 5mg per day. Without the prednisone at this time, my pain levels are life altering. Over the years, the side effects have primarily been bone loss (I was treated with Fosamax 20 years ago), and significant bruising. I hope there aren’t other side effects that have not been noticed yet, but I don’t feel I have much choice.