Prednisone Versus Prednisolone: the Same for Everyone?
Whether medicine is personalized or not, patients are
It’s fascinating how drugs are metabolized differently in different people, with different side effects and varying levels of benefit. But, prednisone is one thing we hear works the same on everyone. Is that right?
Prednisone works well enough on most Rheumatoid patients that it’s used by some doctors as a method for diagnosis: response = Rheumatoid Arthritis diagnosis. But, occasionally, patients mention that prednisone does not work as well for them. Some say that they need a high enough dose to be effective that the side effects are not worthwhile. Others say it just doesn’t work. And there was a fascinating comment recently by Belinda about prednisone working differently than prednisolone in some patients.
Prednisone works for everyone: FALSE
Three years ago, I stumbled upon a statement about the effectiveness of cortisone that jumped out at me. It was a historical article about the invention and early experimentation on Rheumatoid Arthritis and cortisone, which is of course much stronger than the prednisone prescribed today. At what we’d today consider a preposterously high dose, Dr. Ward at Mayo Clinic treated the first 100 patients with cortisone. Think of it as an early clinical trial. Their findings? Lots of side effects and an “effective response was seen in all but one patient.”
Stunning. Even at that high dose, they found one non-responder to prednisone.
After Belinda’s comment, I started thinking about this again. I wonder how many non-responders to prednisone there are. And why doesn’t it work for them? Would prednisolone work better, as it seemed to for her?
Katie Beth and I studied the Wikipedia diagrams the other night. She’s studying microbiology and organic chemistry right now so she was a big help. The prednisolone has two more hydrogen atoms on the molecule than the prednisone.
It reminds me of T-3 and T-4. I’ve had thyroid disease since age 15 and this is a simple, but critical truth that is still being learned by many in endocrinology: some patients do well on levothyroxine supplementation (T-4). Other people do not as readily convert synthetic T-4 into the active form, T-3. The tiny difference of one atom on the molecule makes a difference so that while T-4 lowers TSH and improves blood results, some low thyroid symptoms remain. The solution? Some patients need to add supplementation of T-3.
I wonder if the comparison is a plausible reason for the difference in the way prednisone and prednisolone work differently in some people. Either is obviously rationale for a more personalized approach to medicine.
Early on, cortisone was called either magic asbestos to protect patients from inflammation or a fire hose to put out inflammatory fire. Maybe it’s more like something that can throw a switch in the body to turn off inflammation – it’s just that not every person has the exact same access to the switch.
What’s your experience with prednisone or prednisolone?
- What dose of prednisone do you have to take before it works for you?
- Are there too many side effects at that level?
- Do you know whether prednisolone works differently for you?
- Is there anyone who does not respond at all to prednisone?
Recommended Reading
- The History of Cortisone and Rheumatoid Arthritis
- Prednisone Dosage for Rheumatoid Arthritis
- When You Can’t Get Off Prednisone
Hi Kelly, after 21 years with RA I’ve had several short course of predisone and prednislone. My usual doses have normally been 20mgs for 10 days. Recently after my hands ballooned I was put on 20mgs for 5 days, my hands slowly went down but I didn’t feel like a new woman which with previous longer courses I had. The most recent course was a higher dose and was prednislone, I was put on 30mgs per day for 5 days over Christmas after what I can only describe as the worst flare I’ve ever had. It worked within a couple of days and took the swelling down quickly. This time on the higher dose I did notice a change to my sleeping pattern, in that I slept really badly and woke often. I still didn’t feel like wonderwoman but I had so much relief after that particular flare that that was good enough for me!!
Even at the lowest dose possible I come down with horrible leg cramps and screaming, wake the whole house nightmares. I cannot take prednisone at all. The one time I was on it, albeit briefly, I did have good response.
this is fascintating to me and directly applies to my experience. My first rheumy ( I am about to move on to number 3) used my response to prednsione to diagnose me—doses of first 15 mg then a taper and then off….over months. I had no diagnostic criteria to work on, neg labs, and no xray done. She began aggressive management with first MTX (too many side effects, felt like I was dying, but some help with the joints), then Arava (liver tests immediately elevated and had to stop, then Orencia. I saw another rheumy who was horrified I think at her treatment without having a certain diagnosis. She took me off everything, did labs, xrays, four hours of MRIs of hands and wrists—all neg. While waiting for her assessment I was so bad off I resumed Celebrex and prednisone. I felt better within about one week. Since she has no idea what I have by her assessment she told me to stop everything but prednisone and prn pain meds (first doc gave me Vicodin). On prednsione now with no clear diagnosis, I feel so much better I have reduced my pain med use considerably. I was not able to get another appointment with her for 2 months. I am treating myself and will now have to drop my prednisone dose —-10 to 7.5 to 5….in the meantime. I am so frustrated—-this second doctor suggested I just apply topical Voltaren to my problem areas (I would have had to immerse my self in a Voltaren bath), go to PT, and exercise. Only the PT has proved a useful suggestion, and it is clear that few doctors have any clue what trying to live and function with these symptoms is like. I am off to find my third doctor. I believe I have RA in evolution, maybe with some fibromyalgia as well, and need to find someone willing to wait with me until I have definitive diagnostic criteria. Of note, my symptoms began abruptly about 18 months ago and have done nothing but progress since then. I have a prior diagnosis of episcleriitis which happened about 3 years ago which has never impressed either of my doctors either.
Are you in Destin, FL, by chance? That is the exact same thing that happened with my Rhem (#1, that is).
Have used Prednisone and Prednisolone at differing levels – bursts, same dose for several weeks, etc.
For me it isn’t really worth it. It does eventually help the inflammation, but I get horrible insomnia, eat everything that isn’t nailed down, and retain water like I’m a camel! Plus for some reason my depression will get worse while I’m on either one.
I was just recently diagnosed with RA (and am still waiting to hear out if I also have Lupus). I have taken prednisone in the past for an allergic reaction and for pain and although it helped with those reactions, I was not very comfortable on it. I didn’t have bad side effects but I did gain a lot of weight while on it and every day I was so hungry I was eating as much as my 6’0″, 250lb husband (I’m 5′!). Now my rheumy has me taking prednisolone when I have flare ups and I’ve found it to be very helpful. I’m on a pretty low dose – 8mg/day for about two weeks. It’s good at controlling many of my flare ups and actually helps control my appetite!
Prednisone is wonderful to relieve pain. I take 5 ml ever day but have to do a stronger dose often. Hate side effects of stronger dose ..gain 10 pounds each time, insomnia, family calls it my bitch pill. My personality changes and I get mean at times. But it did get me thru Christmas. Benefit sometimes out ways the side effects. I now know how I act so I tell family members when I am on higher doses. I now am conscious of my actions so they aren’t as bad. Thanks
Predinsone has worked great for me. It’s interesting that it is used by some docs as a way to confirm RA – I had not heard that. In fact, early on in my RA, I was getting random bouts of hives, so I took 15mg of prednisone from my dermatologist. Magically, it made me feel like a human being again! Of course, at my next rheumy visit, I told him about this, and I’ve been on 5mg daily, since. It’s not enough on its own – I wish I could take 10/day, but being I am fairly petite, my rheumy didn’t think it was a good idea, so I’m on a cocktail, now (as many of you are, I’m sure) of NSAIDS and just started Enbrel 6 weeks ago. So far so good – hoping I can actually come off the prednisone. No unbearable negative side effects yet (except slow wound healing and bruising), but obviously, don’t want to develop diabetes or eye problems. If only I could pop that stuff like candy, life would be better! haha!
Prednisone for a long time seemed to be like a wonder drug for me. It took away the pain and stiffness and swelling. I could deal with the 75 lbs I put on from it. Then, about 6 months ago, the prednisone actually started making my symptoms worse. My skin was constantly red and I couldn’t even stand to walk around the house. I’m finally off of it, but I wished I would have gotten off it sooner. If I’d known how awful it would end up making me feel, I would have pushed my rheumatologist to take me off it ASAP.
I have had great luck with prednisone. Minimal side effects and works like a charm for me. I have had RA for 15 plus yrs and I will take 5 ml in morning and 5ml in the evening if I am having a flare. It really takes down my swelling (in hands and feet) and makes life more livable when I am in pain and berely walk. Not sure what I would do without it! I have been on higher doses and have had no ill side effects. It is my go to drug that I know will help me in a pinch.I do know however some people who just cannot take it even at low doses.
When I first developed symptoms, it was quite suddenly, all in the space of a week. Before/while they figured out what it was, I was put on 50mg of Prednisone/day. (I’ve since been gaped at by other doctors when I told them that amount, so I understand that’s a fair bit.) I took it all up at that dose for about a month, then tapered down (halved then halved again then halved again) over some weeks, but never had any side effects whilst on it. No weight gain (or loss), no effects on my sleep, nor any of the other side effects I’ve heard reported. It also never entirely dealt with the pain: my feet always felt like I was walking on rocks, Prednisone or none. But I was able to get out of bed and go to work again, which was something.
I have seronegative inflammatory, symmetrical polyarthritis with no markers of anything in my blood and still no diagnosis any clearer than that.
I cant take it … even a dose as low as 5mg … puts me on a high so bad … I bounce off the walls … get mean and nasty… cry … weep like mad … my muscles ache like I have been hit by a mac truck … one Dr gave it to me with a 5 mg dose of diazepam … which did help for a while … my RA Dr … wont do it that way but wanted me to take it for three days without the tranquilizer … I could not do it … had to stop taking it … so for me … I have no tolerance for prednisone ..
I was diagonosed last Nov. with RA, i have had 2 shots of predisone. It was a life saver, not too many side effects, i get very hungry. But i feel better; swelling went down, pain went way down. Now ready for the third shot, by the way lasts about three weeks. 80 ml in the backside… (yeah)
but it helps so much.
I respond so much better to prednisone. Prednisolone doesn’t do a thing for me when I am flaring other than give me major hot flashes and raise my BP. Prednisone raises my BP but actually helps the flare.
Prednisone did relieve my joint swelling but I definitely had a personality change, I was on edge, cried easily, temper flares, insomnia and weight gain. I prefer to avoid it, I am still continuing with Methotrexate and since no biologics have produced results I am now receiving Rituxan infusions.
I was diagnosed April of last year. I have been either prednisone or prednisolone since then. Both worked really amazing for me. Although I was eventually switched to prednisolone because he thought i would have less side effects. which has proven to be the case.I fluctuate my dosing depending on severity of symptoms. I take anywhere from 4 mg to 16 mg a day. I mostly take 12 mg, anytime I dip below that I have pretty significant bilateral knuckle, wrist, shoulder and knee swelling. Lately I’ve been having bad emotional mood swings and irritability, for the first time in the 9 mo I’ve been taking them. I want to try to get off of them! But they are my life saver. I feel so much better when I up my dose and feel like my old self for a week or so. I wish something would start working better so I could get off of them! I take MTX injections, sulfasalazine, and just started enbrel.
I am currently back on prednisone and I absolutely hate how it makes me feel. I just kind of feel sick to my stomach 24/7. It has, however, helped with the swelling in my hands. I have had diagnosed RA (positive RA factor and ANA) for 12 years but had it for many years prior to that – no one could figure out just what I had. My brother also has RA and when first diagnosed was put on massive doses of prednisone – he ended up in the hospital twice and now has severe diabetes and he lost his eyesight from it. He has since regained about 70% of his vision and that is the best it will ever be. Prednisone is a dangerous drug unless used correctly – his first doc, apparently, used it with abandonment and this is the result for my brother. I haven’t gained any weight (in fact I have lost some) while on prednisone but my face, cheeks, etc are bright red as if I have a high fever (I don’t) and I just feel sick all the time. My take is it isn’t worth it for me to take the prednisone because I don’t have a dramatic improvement with it and I just feel sick all the time. I am also on Enbrel injection once a week and the jury is still out on if it is helping enough to continue it. I wish, I wish, I wish I could take NSAID’s for some relief but about 6 years ago I had a bleeding gastric ulcer which required a week in the hospital (the ulcer was non RA related) and the docs won’t let me take any anti-inflammatories because I am at such a high risk for another bleed. I just keep thinking if I could take them and dull the inflammatory pain, I would feel better. I hate this “hidden” disease and like most, I have heard “oh yeah, I think I have a little of that in my back – it hurts when it rains, is cold, etc” – I wish we could get the word out that this is NOT just like every day arthritis and I agree with the person who said it should be re-named Rheumatoid Disease instead of Rheumatoid Arthritis. We are all going to get regular osteoarthritis somewhere, someday as we age but this is so totally different and so debilitating. Every day is a new challenge and my choice every day when I get out of bed is “Will a cane be enough today, or will I need to use my crutches, or is this a wheelchair day” – it is so hard to keep going day after day after day when you are in constant pain with no relief in sight.
I should have added on the end of my earlier post about tapering and how important it is. The last course I had right before Christmas, I specifically asked whether I needed to taper off as it was the highest does I’d been on so far at 30mg per day. Well I was told no that was fine to just take it and come off when finished I even double checked. Well I took the last dose on Christmas eve and when I woke up on Christmas day I felt like I’d been kicked black and blue from my waist up. My skin felt like it was super tender/sensitive to the touch just like severe bruising and lasted till the day after Boxing day. Never again will I take pred without tapering at that dose, it was incredibly painful and that was the only thing I could put it down to. Anyone else ever experienced this on prednislone?
For me it’s a little wonder pill. Never been on more than 10 mg a day. Right now at 7 mg. Side effects weight gain. But hadn’t been to bad. Would live to wean off of it again. I did that a few years ago and then I flared up again after being in remission for a couple of years.
This is a horrible disease. I have to have full shoulder replacement and both wrists have limited mobility. And both elbows won’t straighten out quite all the way. But all in all I’m ok. Could be a thousand times worse. Thank you Jesus!
At the time I was diagnosed, I was in such pain that I found it difficult to move, even while taking Hydrocodone and Advil round the clock. The orthopedist I went to for the pain in my knee told me I actually had RA. She put me on a burst of prednisone: 80mg to start! But within 2 hours of taking it, I felt transformed. I LOVED that medication for what it did for me. But then I had to taper off, and as I did, the symptoms started coming back. I’ve been on JAK (Xeljanz) for three years now and have slowly weaned myself down to 2mg of pred. I plan on being off it completely in two months. As for side effects, I definitely gained weight on it, and my face got puffy. Obviously prednisone can be both a miracle drug and a nightmare, but for me back when I was first going through all this, it was a godsend.
Even though I am young, I’ve been given prednisone and prednisolone on several occasions to help with either easing into a new medication, or immediate emergency relief of swelling (before my diagnosis, that was all Children’s Hospital could think to give me). I will say that if you do a tapered 10 day, it helps until the day after you quit taking it. It seems to only do short term in this instance, but the results during are great for me. I also take low dose whenever I start a new medication until it starts building up. It seems to have a slightly longer effect after the dose, but still good only during the time I’m taking it strictly. The problem I have with Prednisone is the side effects. In a 10 day period, I can see a dramatic change in appearance (as a college freshman, getting a round face morph is never uplifting) and night sweats that accompany insomniatic changes. It really does help, and I will deal with it for swelling and pain relief any day, but I really feel strange and different on prednisone chemically. Its worth it, in my opinion, though. My family members who have RA and my grandma with SLE both have pretty much the same opinion, but refuse to take it because of the side effects.
Obviously, this is just my opinion of these medications, and side effects are different for everyone.
I cannot take Prednisone at all! I’ve was diagnosed 5 1/2 years ago and in that time they have put me on it 3 different times… from 2 mg. to 10 mg. I have medication sensitivities so they start me low on anything, just to make sure I don’t have a negative reaction. With Prednisone.. it doesn’t matter what the dose, I have horrible reactions to it. I would rather suffer the pain than have something control my mind like that drug does! I become very moody, alternately crying and being angry. At what? Well, if there isn’t a good reason, I make one up. Once I’m off it for about a week… then the pain comes back, but WORSE! Then it usually settles down after about 2 weeks. That medication is just not worth it to me, even though it helps with the pain.
I have been on and off Prednisone since I was diagnosed April of 2012. At the top end, 20 mg a day. Helps the inflammation and pain dramatically, although I did not want to be on such a high dose, so my doctor weaned me down to 2.5 mg a day. And then I asked him if I could go off it completely since I was doing so well on sulfasalzide. He suggested I wait until after the holidays, so on Jan. 1, I went off completely. Within 5 days, the joints in my hands and knees were swollen and painful. I was sad but I went back on the 2.5 mg a day and am feeling better. I don’t have too many side effects, bruise more easily and some weight gain but overall not too bad. I feel I had a false sense of doing better, maybe a remission until I went off the prednisone and reality set in. So I think my question for my rheumy at my next appt is, does Prednisone give a false sense of doing better, etc, possible remission, i.e., how can we really know if the Sulfasaladize is working to slow or stop the disease if I can’t even be off Prednisone? Do I need to go on something else?
I was diagnosed with severe RA in 2007….was started on the usual drugs…metho, plaquenil, sulfaselazine….could not deal with side effects at all and did nothing for me. All off a sudden one morning I woke up and I couldn’t get out of bed!…had to be carried to the bathroom, I was sooooo scared…called my Doc and he called in a prescription for Prednisone…25mg a day to begin with…..within 2 hrs It was like it never happened…I was fine…..and have taken it everyday ever since….that’s right 6 years….although 4 yrs ago I tapered down to 15mg a day and it still works….no side effects….not one….that I can see anyway…if I don’t have it…which has happened because forgot to renew prescription in time like an idiot…within 4 days I DO NOT WALK…Prednisone saved me. Doctors, however, differ greatly on the drug….the older Rheumy Docs think it’s a death sentance….I actually had one say in front of my 10 year old daughter “If you don’t get off this you won’t live to see your daughter graduate”…needless to say I fired him…or the usual….”It just masks the disease”…..Ya know what…..it works…there is no cure and all the other drugs can only claim that they MIGHT help slow the progression….still progress just slower but with a whole bunch of other side effects …some far worse than the disease itself. Iam anti-pharmacutical…..and sometimes get alot of flack from other RA patients regarding this….I don’t take any other drugs except Prednisone…which by the way in Canada costs about $10.00 a month as opposed to all the other very expensive drugs that I personally think don’t work for most people….not all of you….I don’t want a debate…..I feel, “whatever works” then take it and be well…were in this together. Granted, since 2007 my left wrist is turned and fused on its own…but I can deal with this and for the most part…getting out of a bad relationship and the horrible sress related to it was probably the best thing….my symptoms and pain subsided almost immediately!….stress is an evil creature….no pain killers….cant function on them and am a single mom…so I deal with it….like we all do…in silence.
On another note……my Aunt (who passed away in early 80’s at the age of 60) who was born in the late 20’s….and in a wheelchair by 17 with RA was one of the first patients to use cortisone….I remember my mom (her sister) talking about the day my Aunt Dorothy called her crying….why???……it was the first time she was able to pick up a hair brush and comb her own hair since she was a little girl……the very sad thing…..was when they took it away….her hair went grey overnight….heavy depression….so sad…..she was a great lady…
I have UCTD- prednisolone helped my symptoms at a relatively low dose of 20mg- however my blood pressure went extremely high and I felt quite ill with it. One reading was 270/180 (taken manually & electronically & verified by my ambulance technician husband (who nearly went into shock). Now on 3 meds to try and keep my BP at a reasonable level & I’m managing 5mg Prednisolone a day- but sadly I am quite symptomatic of UCTD depite Azothioprin 200mg. Frustrated on a dialy basis and waiting for more Rheumatologist advise end of Feb.
I was born with JRA and am 51 now so you can imagine the number of meds (including experimental in the 60’s) I have tried. Prednisone works great for me at 5mg per day, more when it rains (my RA reacts to humidity). It takes away the puffiness so I can use my hands. It gives me energy again as well. It has side effects for me such as aggressive personality and red itchy rash in hot spots. I have not had an issue with weight gain due to prednisone but can say that I did because I aged. I lost over 20lbs. by watching what I eat. Prednisone makes me hungry but WHAT I satisfy that with is what controls weight gain. Note: I am also taking Methotrexate.
An important note……NEVER, EVER JUST STOP TAKING PREDNISONE…..you must taper off very slowly…you could drop dead if you have been taking it regularly and just quit.
Ive had no luck with prednisone in regards to my RA, only thing it did for me was causing moon face and 30 lbs of weight gain. No pain relief no reducion in swelling. My rheumy still offers it to me, but I dont use it because it does nothing for me.
I don’t have an official diagnosis: inflammatory polyarthropathy is what goes in the record. All labs normal, visible damage on x-rays. The first thing my ex-rheumy did was prescribe 7.5 mg prednisone while waiting for results on a chest x-ray & TB test. It did make a significant difference: the elbow that screamed every time I tried to do something fancy like get dressed finally shut up, and the pain in my hands and feet backed off. I’ve been on it for 10 months now, currently at 5 mg. The 7.5 was interfering with sleep, and even the smaller dose is giving me constant heartburn. I’ve also gained 10 lbs., which I hate. I’ve never had to even think about my weight, and now it and my blood pressure are steadily rising. I think it’s also making my mood darker.
I call it The Devil’s Drug. It does work, and I did feel better at 7.5 mg than I do at 5, but there’s a trade-off. What is it doing to my bones, for example? Does it just mask symptoms, or does it slow the disease process? I’d love a definitive answer to that. I’m thinking about taking myself off it, or at least cutting down to 2.5 and seeing if I can live with the increased pain. The further I get into treatment, the more convinced I am that there are no good answers, or at least no easy ones.
The issue for me is that it works BEAUTIFULLY (like a total miracle) for the first week, and then … BAM, it just stops. I mean, it doesn’t totally stop. I’ve been on it for 6 weks this time and the pain in my hands and my feet has not gone back to the level they were before I started. But I’m having tons of issues with the rest of my body – The pain returned after a week or so. I’m not sure what this means. I think I probably do best with “burst” therapy where you do a high dose for just a few days, then taper and stop. But I’m on ongoing steady doses (15mg right now, I think) because we’re waiting for me to start a biologic next month and I’m not okay on just MTX in the meantime. Another issue for me is the darn migraines/headaches. They’re so awful. I also feel like a really crappy parent on prednisone because I’m so irritable and angry all the time. I hope that the biologic works because I’m tired of having to go on prednisone several times a year. Has anyone else had this experience of great relief for a week or two, followed by return of pain?
My spouse also has autoimmune disease and when she’s on prednisone she has become manic / hypomanic (she’s not bipolar). She becomes truly crazy. So does my son when he’s on it for asthma.
Prednisone works great for me, but unfortunately, after about two weeks I wake up each morning thinking of new and unusual ways to kill myself..,.
I’ve had three different courses of predisone as well as a few cortisone shots here and there. I stopped doing both awhile ago because it was found out that I had lost almost two inches in height because of my use of them.
I LOVE my prednisone. When I am allowed to take Prednisone I am able to sleep. For some reason Prednisone makes me tired and sleepy. My Doctor said that it was because it takes away the inflammation, and therefore the pain, so I am ABLE to sleep and my body knows that.
I currently take low-dose 5mg/day. It helps a lot! It’s not as good as a higher dose, but it’s better than nothing.
I really prefer 20-60mg/day. But, it’s not a sustainable dose. At 60mg/day I will get some side effects after 5-7 days. I will be irritable, super tired, and have soreness in my muscles.
I cannot take the “shot” of steroids because I have a bad reaction. The back of my neck will get a hump that will be extremely painful and hot.
I don’t believe I have ever taken prednisolone, so I do not know if it would work for me.
I’ve loved steroids since I was a child, but it took 28 years to figure out why!
Hi Kelly,
Well prednisone is metabolized by the body (mostly in the liver) into prednisolone. Prednisone is an inactive form and must be converted to prednisolone. If someone has impaired liver function or insufficient metabolizing enzymes (through genetics, or liver damage) then they wouldn’t not produce prednisolone and subsequently no medical benefit. But this is my scientific take on it. There is always room for exceptions.
Personally, prednisone works good for me. I tolerate it pretty well at the low doses I’m on. I find it pretty hard to taper off it from 5 mg on down. Amazing what just a couple milligrams can do.
Sincerely,
RaRAP
yes! That’s exactly what I was getting at with the parallel with T-3 and T-4. We had a Mayo Rheumatologist respond to this on Twitter today, saying he has seen this in patients as I suspected – responders to methylprednisolone when prednisone does not work well. So, my theory then is that in some people the prednisone is not changed to prednisolone as readily – as with the thyroxin & its iodine molecule. I wonder if the body doesn’t as readily hydrogenate the prednisone – could it be that simple? Either way we need a study. And docs need to know they can try one if the other fails.
Hi Kelly,
Yes it could actually be that simple. There are quite a few medicines that are pro-drugs that need to be metabolized to become active in the body.
For prednisone, the tricky thing is figuring out what exactly is metabolizing it. There are tons of different enzymes and things in the liver that metabolize all kinds of things. They do know that metabolism of prednisone can be increased by induction of some CYP p450s, so that may suggest one route of metabolism.
I don’t really know what we’d gain by knowing the mechanism. I think just knowing that if prednisone doesn’t work that there are other things they should try before giving up on corticosteroids is enough.
It has been a revelation to me & if Xeljanz doesn’t work, I may bring this information to a dr so I can have another try at relief. Very hard to keep pressing on like this – and of course so for many others too, I’m sure. I know several people (including me) whose lives were saved by finding a dr who recommended T-3.
I am bipolar, and any sort of steroid is not for us. Even if the rheumy or pain doc assures you that at the low dose he/she will be using, there could not possibly be a psychiatric effect. “Oh, the shot I’m giving you is the same I would give a fragile diabetic. You’ll be fine.” Desperate to feel better, I allowed it, despite my psychiatrist’s misgivings. I then spent a few days in hypomania, which for me is pretty fun, and over a month in severe depression, which is not fun at all. Oh – and it didn’t even help the pain.
I have had RA for 17 years. I’ve been on predisone a few times. Usually only 5-10 mg. for 3-5 days, then weaned off. Last year I became sick and was unable to get well at home. The drs said I had pneumonia and I’d be hospitalized for 2 days. So I was admitted. They tried medication after medication, yet I was getting worse and worse. I was having chest x-rays done every day. At first it was just my left lung, then my right one became filled too. I had no breath sounds under my shoulder blades. Dr. after Dr. saw me, changed antibiotics. Finally, they came in and said there was nothing else they could do, but they could try a throcentesis. I’d worked in a hospital and was scared to death, but they did it. I continued to get worse. I was having very high fevers, was on 3 different antibiotics, nothing was helping. Finally, they took me to surgery and cultured my lungs, tested me for legionaires disease, Pontiac Fever, TB, and various other illnesses and diseases. Nothing came back positive. After 15 days of fevers and near death experience, and seeing infectious disease drs. they put me on 60 mg of predisone. It took about 2 weeks, but I immediately felt better and was finally able to go home. Then I was quickly weaned, after a month, and I developed pericarditis. Again, hospital visits, CAT SCans, Echo cardiagrams. So I went back on, after another month I was weaned again, the pericarditis returned. I was devastated. I had also developed nodules in my lungs from the RA. I had the moon face, was gaining weight, and i was being very careful about what I ate. It has taken me 16 months to wean myself (under dr’s care) off of the medication, but I have done it. I have now been without the predisone for 1 month and have not developed any heart or lung problems for the first time! I think it is a miracle drug, but the body becomes extremely dependent on it. I’d take it again, if I went through what I did last time, but it’s terrible to get off of without major complications. Don’t wean yourself without making sure you are doing it very slow and under a drs care. At least I am thankful to have had the medication a hundred years ago, I would have just died. Today I am still able to teach school, do things with my teenage son, and have a beautiful life with my husband. I am very thankful!
Prednisone is either not available in Aus or rarely prescribed, I’ve never seen it. I’m on Prednisilone for RA, my wife and son for asthma and food allergies respectively.
I’m rarely below 10mg daily. The Rheumy keeps trying to get me down to 7.5mg but it doesn’t work, I wind up back in 25mg (considered the max safe dose for more than 48hrs here) for a week before tapering down 2.5mg a week over 6 weeks. Last time I stopped at 10mg myself, didn’t even bother going lower coz I’ve spent 5 weeks in my worst flare ever.
I hate what the high dose does to me, makes me very depressed, moody and grumpy, so I haven’t even tried to go back up again this time. In reality even 25mg doesn’t make enough difference at times like this to justify the side effects.
I see people are compairing notes on Prednisone and differences in the way it effects people. I am wondering if anyone has any similar thoughts on Methatrexate. I understand that the minimum dose is three 2.5 mg. tabs per week. But I am curious if anyone has found that they can drop below that amount and still remain in a drug-induced remission. Any thoughts?
Keep all the pain pills! When I have a problem or a flair Prednisone is there for me! It takes the pain level down to a point that I can handle! I run the 4 week program 20mg, 15mg, 10 mg then 5mg. This month I had a disk in my neck collapse from RA. My Roomy has me on a high dose of Prednisone until I can see the Nero Surgeon on the 28 th. Down if it is not nailed down I will eat it! It also makes me want to sleep long hours. I love my RA, I call it ” Really Absurd-ed” because from month to month I never know whats next! Good Luck All.
I’ve been on prednisone for over 22 years on the advice of supposely medical professionals that didnt advice me of all the negative side affects. I’ve been on varies dosages depending on the inflammation and pain level. One RA specialists told me in the middle of one my worst flare-ups, “You can either feel better or look better, you can’t have them both…”. I was devastated! I had gained over 100 lbs, working at a very stressful job, low pay, I couldnt go out and buy better fitting clothes, my self-esteemed had hit an all time low and to be told that sent me down a hole that I’m still trying to dig myself out of. Prednisone can be your savior when the pain and inflammation has you in its grip but the price you have to pay is one that no one should have to endue. There has been times I thought that I was losing my mind from the mood swings…the weight gain had me avoiding even looking in the mirror at myself, too disgusted at the person I had become. Depression kept me away from the very people that could help me and I couldnt see no way out of this dark, painful tunnel that was closing in on me. It took a stroke and the lost of everything that I treasured to open my eyes to what I was dealing with. I had to take control of my life again. I had to become my own doctor, meaning that I had to learn everything about this diesase, the treatments, the drugs and all that pertain this illness. I decided what medication that was best for me, of course I included the doctors in my decision but I would never again allow them to treat me without any input in the treatment. I found doctors that was willing to think outside the box. I included homeopathic treatments, relaxation techniques, spiritual, etc. I realized that I had to be proactivated with my approach to this disease. I had to change the way I looked at myself, RA, the drugs, everything needed to be reexamined. My change started then, I still have flare-ups, pain, inflammation but I reacted different than before. My mindset change, the disease didnt change, only the way I looked and reacted to effects of this disease. It took years of pain and suffering, bad medical advice and loads of overprescribed prednisone to get me to this point in my life. I’m 50 yrs old, I’ve had RA for over 22 yrs, I’m overweight (I’ve gained over 150 over 22 years), I’ve a stoke, I’ve lose my livelihood (my job due to RA), I’m a single mom of a 26 yr old and I’m happier now than I’ve been in quite awhile. Not because the disease is in remission or anything, or the bad news that I can’t just stop taking the very thing that was meant to be a savior to me “prednisone”…whats change is the way I look at the disease and the way I’ve taken control over my life from this disease. I would be lying if I tell you that its easy and you wont become discourage at times, what I can assure you is that if you change the way you look at the disease, react to the disease, and stop allowing it to be the end all of your life, I guarantee you that things will change in a positive way for you. So, is prednisone the miracle drug? NO! Can it help with inflammation and pain associated with RA? YES, you have to find a dosage and schedule that’s best for you, not one that works supposely for the norm. Every treatment should be individualize for each RA patient, plus you must include other alternative ways to your regime. No two RA patients are like, the medial field just wont acknowledge this or do anything different to get this across to RA patients. So, you will have to be the determining factor in treatments. It can be hard but the end results are what matters most. THE QUALITY OF YOUR LIFE IS THE DETERMINING FACTOR IN EVERYTHING YOU DO DIFFERENT IN YOUR SEARCH FOR TREATMENT.
Was on prednisone – 5 mg – once day for approx 3 weeks – puffy face/hands, depression (I am also bi-polar) don’t know why the rheumatologist doesn’t get that I can’t take prednisone – makes me mad that he just won’t/can’t understand that I should take it! Sweating all the time, didn’t sleep for days! Won’t go back on it!
I know what you mean about the rheumy. Mine has argued and argued with me. She has even argued with my psych. THEN she gave me some anyway in a bursitis shot. I had no idea what had happened, I found out from another doc that it had been a steroid shot. She is back from maternity leave next month. There will be a discussion.
I have resorted to prednisone only 3 times in the past 15 yrs. I’ve taken it when I’ve been on vacation and needed to physically walk. Once when my pain and inflammation was so severe I couldn’t take one more second, and once when a horrible dr. INSISTED I take it.
Even at 2mg, 2 days in a row, I get depressed, hyperactive (that’s a fun combo), bad headaches, irritable, ravenously hungry, etc. It works for me, but 5 minutes after it starts to help, the side effects begin.
I have been on Prednisone, or some form of steroid, for 15 years. For about 10 years, I took 5 mg along with Enbrel, and had no problems from Prednisone at that dose. Then Enbrel caused dangerous effects on white blood cell counts and I had to stop, disease flared dramatically. Have tried multiple drugs since then, no response. Was on 10-15 mg Prednisone/day for about 3 years. Miracle drug for me. Makes all the difference in quality of life. BUT, have osteoporosis with 2 compression fractures in the last year, bilateral cataract surgery definitely related to Prednisone, horrible skin fragility and skin tears like an 88 year old (I’m 59), and lots of annoying side effects: sweating, palpitations, mood changes, moon face, fat re-distribution. I have had to go on disability. I am urgently trying to taper, took me a year to go from 15 mg to 8 mg, having terrible non-stop flare on 8 mg, but determined to get it as low as it can go.
It is very reassuring to me to know that when I cannot cope with the flare, if I up the Prednisone for a few days or a week – so far, I know I can get temporary relief. I feel lucky for that. But I really have to be careful, because Prednisone has already done great damage to my body.
I’m on 10 mg daily of pred. Have been for a couple years. Any lower and I have side effects. Higher doses work much better for me as far as making me feel better but I gain massive weight and my liver enzymes whack out. 10 mgs. doesn’t control everything but is enough to allow me to partially function without side effects. My doc doesn’t think I’ll be able to wean off because when I do the problems it treats return.
I’ve had numerous cortisone shots over the past five years since I was diagnosed, in wrists, hips, etc. For example, it enabled me to function when I had 3 acute bursitis on the same hip. Sometimes it works for a good 4-5 weeks, sometimes it doesn’t. One should warn receivers of such shots to remain idle (don’t move the joint!!!) for at least 24 hours, and ice it. Otherwise it does not work as well. Also, on occasion, when pain cannot be controlled somewhat by my regular pain meds, and I am ready to either kill myself or anyone in sight, I take 25mg prednisone for four days, then 20mg for four days, then 15mg, down to zero – with no special tampering effects. I mean, apart from the weight gain, moon face, difficulty to sleep, being hyper and boucing off walls, feeling depressed, it works fine! The key is fast and furious – do not stay on it for long, it seems. When nothing else will work, there is prednisone. It is no miracle drug for me, but brings a welcome relief. I’m glad I have an open prescription at my local pharmacy – but then again, I only take it 2 to 4 times a year.
I have been on prednisone for almost 3 years…higher doses in the beginning, then weaned off until 5mg daily…can’t go below that …what a difference 1 mg can make. I don’t get any side effects..for my RA, I’m also on Methotrexate and Remicade..celebrex and stonger pain meds as needed…I also have High blood pressure and suffer from depression and panic attacks (since before RA)..I think the combination of the meds I’m on may keep side effects of Prednisone away (my opinion anyway) I know other people with RA and they hear all of the side effects you can get from different meds and they get scared and it stops them from taking them…and they are miserable..everything works differently for everyone…find what works for you and forget everything else, yes be informed, but don’t let everyone elses horror stories stop you from trying something that may mean the difference between getting out of bed in the morning and leading a great life because it didn’t work for someone else. I’ve tried things I couldn’t tolerate and stopped, and tried something else…I’m ok for the moment, but I get flares…sometimes I can get through it and other times my doc has to adjust or change a dose or try a new one. I just want to feel better…I just think everyone should see what works for them and make their own decision
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Thank you so much. That is greatly appreciated. Sometimes it’s difficult to manage as a moderator when hostility is expressed so I understand. More gentle readers (which are a majority) tend to refrain from answering back because confrontation is not what they came for, of course.
I can’t help but wonder if your comment was meant to be posted on another page where there were recently coordinated negative comments. https://www.rawarrior.com/sensational-headlines-on-rheumatoid-arthritis-exercise-round-6/
Meliann……I think your post works on this discussion as well….even though it was meant for another…Kelly is great at handling all posts….sometimes it’s very hard to understand how a person is feeling or how to take them through blogs, emails,texting and not in person but you are right our disease IS so different from each other, from day to day and it just comes down to what works for each of us…I do enjoy reading the diversity wether I may agree or not it’s all a part of learning and supporting….and as Iv’e said in the past…I have learned more from Kelly and all the RA Warriors about our disease than any Doctor anywhere in the past 6 yrs…..Good luck to you and everyone!
thanks for commenting Karla. I’ve said many times how important it is we recognize differences & respect people with regard to them and that we can’t expect awareness outside of the community if we do not have it within the community as well.
And this is something I have learned…through you Kelly….as I can be a little too “assertive” sometimes…lol….and like I said it doesn’t sound the same at all in text form…..so thank you.
Thanks Karla, appreciate your comments, Kelly is awesome, isn’t she?
My comments are now on the exercise comment site.
Hi every one,
I have been following this talk about prednisone or not. I have been using prednisone now for 30 years. I don’t care if my face is fat or I gain weight. Don’t know if I’m moody or a bitch when I’m on them. I’m so used to sleep little. Some times I go for 4 days without sleep. What I do know is if I am not able to do any thing, then I’m moody, then I yell at every one around me. If I’m in pain I do feel depressed and cry day and night. I never tried to go with out them. I enjoy being busy, enjoy to bake, craft, started with painting lessons, knitting ect. Had a shop for a few years and a play school. Studied several courses. If I can’t be busy I will go crazy. I will rather take the risk in using prednisone and enjoy life. I had 30 good years so far and would have hated myself if I knew my life would have been different and I didn’t take that chance. Live is a risk. It’s our choice to take the risk or not.
Hi Nellie, I’m sooo happy to hear that someone else has been on prednisone as long as me! I do know the dilemma in trying to make the decision to take or not to take prednisone but in the end its the quality of ones life that matters most! I have the same relationship that you have with your pharmacy but with my personal doctor. No matter the day or night I can reach him and he refills my prescription. I actually have his cell phone on speed dial!! LOL! He knows the struggle and pain I’ve suffered due to RA, and he’s determined to help me have a more productive and as normal of life as I deserve. I must admit that the most difficult things beside the pain of RA to deal with is the weight gain. I didnt know how vain I was until my weight started balloning out of control. It was a big hit to my ego and self-esteem. I felt sooo shallow and yet miserable. I went from the low 120’s to almost 300 pounds in over 22 yrs. I cant hardly believe how big I have become. When you young and single, looking for a mate to spend the rest of your life with it can be quite difficult accepting the rejections from the opposite sex due mainly to my weight. If I hear another person tell me that I have such a pretty face, but if you lose some of that weight maybe you can get a man to marry you. Can you believe that? People actually have the nerve to even say that kind of thing to a person. After hearing that and the obvious no I’m not interested, it has an effect on ones image/self-esteem. Other than that, I’m dealing quite well with my RA. I turn 50 in 2012, still havent found a mate to spend the remaining half of my life with but I would like to say that it doesnt matter much…but that would be a lie. Knowing this, hasnt kept me from trying to live a fulfilling and productive life. Nellie, you seem like the type of woman that havent let that type of petty thing get you down…I’m glad to know that a women like you isnt a figment of my imagination! You have given me hope! Keep doing whatever you’re doing sistah!!!
@ Valerie Emory .Thanks for the reply. Glad to see some one feel the same as me. I would like to hear more about you. If you want to, please e-mail me at nellie26@gmail.com.
Do you know how to copy-paste it into the box on the other page? Then if you like I can delete the other one from here on this side – yes.
I’m sorry, Kelly– I don’t understand what you’re asking. I do know how to copy/paste, but can’t seeya see the box you’re describing. I’m guessing the problem is because I’m writing from my iPhone’s tiny screen? Maybe if I get out my computer later & look at it, I’ll “get it.”
I mislabeled the hydrocortisone as Adreset (something very different). The brand name is actually Cortef.
I have had RA for a year and a half and have been completely bed bound since then. There is hardly anything I can do for myself, most days I can’t even feed myself. We have yet to find an med that has helped my RA even slightly. Prednisone was a horrible experience for me. While I was on it I would go 6 or 7 days without sleeping, fall asleep for 2 or 3 hours and then do it all over again. I had no appetite what so ever and would often go days without eating. However, even though I was not eating I gained 85 lbs in four months from the prednisone. And being bedbound it is nearly impossible to lose it. About 20 lbs came off within the few weeks after quitting, but I am having a hard time with the rest. My entire body is now covered in stretch marks which actually started before the weight gain did. My rheumatologist said that this often happens even without weight gain when on prednisone. I know it has helped many people, but I hope to never have to use it again.