In October I started having severe flares. I didnt know what was happening. My pain clinic doctor ordered RA labs. Everyrhing came back way out of whack. I was stunned.
I was referred to an RA doctor. Kept having flares
I finally got a cancellation in January and had 1st appt. He redid labs. Completely abnormal.
Officially diagnosed.
Prescribed Hydroxychloraquin. In February flares got worse. I sat on the sofa and watched my hands as the neuropathy travelled from my wrists to my finger tips. Stunned again.
I asked for Pregabalen for ongoing tingling in my fingertips. In March flares were outrageous. I felt like I had been punched in the face with 2 jaw flares. Got another cancellation to see him.
He prescribed Prednisone 25-50mg per day. He has given me 3 repeats. I see him in June.
I have been reading so much about prednisone I am spinning. I took one 25mg tablet then stopped. Thinking about the future weight gain and moon face really bother me.
I just dont know what to do. Very confused
Any and all thoughts greatly appreciated 🌹
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TaylorPlayer
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I am sorry your suffering so much darling. Once you get some RA drugs sorted out you will be able to reduce your steroids, but i am afraid once you f=get the RA rugs it will take up to three months to work. Hugs.xxx
just in time for the summer heat. Lol. Thank you. This is all a huge daunting learning curve. I have a great well regarded doctor so I feel confident he at least knows what he is doing. Now we need to see what will work best for my body. I am trying to be optimistic, not scared. Thank you Sylvi 🌹
not everyone gains weight with steroids.I have beeen on 10mg for about 13 years and don’t think I have a moon face or have gained weight.Maybe beeen lucky or it’s in my genes..Steroids will help and as sylvi said you can ask to reduce at a later time if it’s possible
Hallo. I’ve been on an average dose of 7.5mgs of Prednisolone for over 33 years and have never put weight on or developed a moon face. Your initial dose is to reduce your inflammatory response very fast and then you’ll almost certainly reduce until you’re either on a maintenance dose (depending on your medic’s point of view) or you’ll taper until you’re off them.
They do work and they are the quickest way to stop your body continuing to cause havoc in your joints. As Fra22 says, not everybody puts weight on and it must be better to give yourself a chance to heal rather than worry about something that may not happen. Best of luck and hope you feel better very soon.
I would deffo tell your consultant your not happy with the current drugs they don't work, there are bio jabs JAK inhibitors and all manner of drugs to try, but you must take them regularly for any of them to be effective it can take 3 months for them to work properly.
I took prednisone for over 6 months before I started Mtx. I did gain weight, and developed a moon face, and eventually had to stop because I had a foot fracture, which didn’t heal. And yet despite all that it was the best I’ve ever felt since this disease took hold. I still ask for steroids every time I see my rheumy 😂. You need to weigh it up of course but they can be a very effective quick fix whilst you are waiting for other meds, so you can get your life back for a bit xx good luck xx
I’ve been on prednisolone for over 10yrs. I did gain weight, and got the moon face. However at the time it was a small price to pay for being able to continue working. I initially was prescribed it for polymyalgia and GCA. When I was diagnosed with ankylosing spondylitis, I tried to taper off. I was losing weight steadily, but feeling nauseous and lightheaded. I was referred to an endocrinologist to look at adrenal function, which can be affected with pred. 3 weeks before my first appointment I had a severe stroke, age 52, found to be due to an adrenal crisis. I now have life threatening adrenal insufficiency for life, where good or bad stress makes me ill, and have to carry an emergency intramuscular steroid injection at all times, and family trained to use it too. Despite only taking 3.5mg these days, I still have the moon face and struggle to shift the 35lbs I put on. It is fine for short bursts, but I know others who have adrenal insufficiency after just 4 weeks of pred, or a few joint injections. Granted they are likely to recover adrenal function, my adrenals are 90% atrophied and produce no cortisol. Healthy individuals start producing cortisol at 4am, so it peaks around 8am when you want to get up and moving. I wake with flat batteries, and have to take my pred at 7am, then remain in bed for an hour or two, till my cortisol levels allow for me to get up and going. Hope they manage to control your flare soon, and that the pred is only needed briefly
I have been on various dosages of oral prednisolone for over 5 years.
It is the only medication that controls my RA. I'm on my 9th and 10th DMARD and still my RA is not under control.
Prednisolone has given me a quality of life that I would not have otherwise had, I'm so thankful for that.
Using dietary control and walking (which I can't do now , due to lumbar, not RA issues) I lost 3 and a half stone in weight whilst on prednisolone. Taking prednisolone does not equal weight gain, but sitting because you can't move probably will.
Taking prednisolone and getting moving is the best option for not gaining weight.
Others may highlight the side effects of prednisolone, but all meds have side effects. The DMARDs most of us on the forum take have side effects, many quite serious side effects. Yet people take them. Prednisolone has a bad name.
Just read the information sheet on a pack of paracetamol and you might not take them again 🥴
All of that said, it does sound as if you require a medication review, good luck for June.
I wouldn’t wait till June. I would contact your nurse and see if there is a cancellation.There are lots of drugs available to add to what you are already on. I wasn’t given steroids(tablets) my consultant didn’t use them. I was given a body steroid whilst they changed my meds, which really helped.On a positive note the right medication should control your RA and you will hopefully see an improvement with your pain.
When I initially saw a rheumatologist he said I had inflammation & prescribed etoricoxib, this was in the February, by March I was still in pain so hydroxychloroquine was added, this was in 2020 just before lockdown, I struggled till November when I was diagnosed with psoriatic arthritis & methotrexate was added & was told to stop the hydroxychloroquine. Within a few days I was in absolute agony so told to to carry on with hydroxychloroquine. Think by then my body had already gone into a massive flare including a horrendous burning feeling in my arms & wrists.
The consultant added gabapentin for nerve pain & started prednisolone, omg, thought I could climb everest I felt so good, this was 20mg but, I couldn't sleep, I posted on this forum & had some really good advice, take it in the morning but to ask if I could get it in 1mg tablets so I could try to find a dosage that controlled the pain but was still able to sleep, this worked.
I did put on some weight as I kept getting the munchies 🙄 but the relief was incredible, I tapered off them but the pain was coming back so lefluminode was added into the mix, I did ask why can't I just take prednisolone as it seemed the only thing that actually worked, was told technically I could, but, steroids can cause other problems which aren't good.
I lost the weight gained when I came off them & didn't get a moon face. I've had them again at different times if I've gone into a flare but always tapered off them.
Wishing you the best of luck & hope the pain eases asap x
Pleased to hear you get the same feeling.. I have mentioned this horrendous burning feeling in the forum before … spreading down my lower arms and into my wrists. Fingers are numb and swollen too I usually get it at night . I am beside myself with pain nothing works to relive . Have to walk around swinging my arms to get any form of relief.. have been prescribed prednisolone and it has gone away.
Mentioned it to RA specialist and his answer was everybody is different …interesting to hear you were prescribed gabapentin …
Totally sympathise with you, at the time my consultant said (over the phone) it sounded as if it was a pinched nerve caused by inflammation. I'm still taking gabapentin & each time I try to lower the dose, within 24 hours the burning starts again.
Since October starting in the night when asleep I kept getting woken with puns & needles & pain in my hands & fingers, my middle finger also started clucking like it was getting stuck when I bent it. Saw a hand therapist who said it's carpal tunnel & cubitol tunnel syndrome & trigger finger 🙄 she gave me wrist splints, finger splint & elbow splints, look like a trussed up chicken going to bed 🤣
The wrist splints definitely helped & the finger splint but I've yet to try the elbow ones as I had an op on my shoulder 5 weeks ago & I'm still in quite a lot of pain from that, the thought of wearing elbow splints at the minute is way down on my list but, saying that, I've been getting horrendous pain down the outside of my arm when trying to do the physio, I may have to bite the bullet tonight 🙄 good luck with it x
I've had them from time to time they help stop the flares, you'll be weaned off them so you can start RD treatment which then brings it under control. I've never been on them long enough to develop the usual symptoms. They're a stop gap meds really & in my case they've been a life saver to stop the horrendous flares that come up from time to time.
I’ve been on prednisolone since July. I was being tapered off but my methotrexate hasn’t started to work yet so my steroid dose has been increased again due to high inflammation levels. The gud news is that I never got the moon face or put on weight 😊 And if u do, it will go wen u come off them. Don’t be afraid to take them, they can work magic!
thank you so much. I started having anothe jaw flare and I knew I had to start the prednisone. The next morning it was gone. I am going to stay on it until June when I see MD.
Today I was outside and it was coolish. I had a hard time walking with the pins and needles in my toes and in my hands. Damn!
My hands have become drier than I can ever remember and I found a great body butter. I rub it it in 3-4 times a day and my hands are much better.
I was so shocked when I was diagnosed and now that I have done so much research I realize what a nasty condition this is and how many folks are suffering so many issues.
I think of you all and hope this ‘new’ vaccine might be a miracle but it will probably be awhile
Hi there I have taken Prednisolone 5mgs for about 10 years now with no ill effects i.e. bone density good, no diabetes. I also take biologics and my rheumy keeps suggesting I try to come off the Pred but as soon as I get down to 3mgs I start to feel tired and achy so go back up to 5mgs. Steroids all through my journey with RA have been wonderful and I have no weight gain or moon face but suspect I have adrenal insufficiency, however nothing compared to what I would have suffered without them. As Pepperpot says don't be afraid of them.
Hi, I had a massive MVA a long time ago now, back in 2000. I was fit and healthy beforehand, I weighed 52kg. I was seeing a Orthopedic Dr, due to my shoulder, he gave me steroid injections at his clinic but he was only putting them in where I said it hurt. Within 6-8 weeks I had gained 50kg+ he never did the procedure properly and unfortunately he passed away in his sleep. He was only 43, then all my records went missing as I was going to court for the car accident I was in, not my fault. Now there is no way I would use this drug again. But in saying that some people do not get the weight gain side effect. Good luck and I hope you can find relief.
Hi! I am so sorry for your condition, I hope you feel better soon. I was diagnosed with PMR back in August and have been on Prednisone since then. First with 15 milligrams then was able to taper it to 10 after few months, unfortunately it seems I can’t taper lower than 8 without feeling some pain, I am still trying to do so. I was told by a new doctor (I just changed) to try to trick my body by lowering the dose every other day and also bring it up again to the dose I was before. I also split my dose( I get 1 milligrams) 4 in the am and 4 at night. Sometimes I have cut my 1 milligrams in half. I am still in the process of figuring it out. Peace, healing and blessings to you
Hi TaylorPlayer, re Prednisolone. I have been on this drug for over eight years now. Started on 60mg per day. I did gain weight and also suffered from the "moon face". Like most meds, they do help with the treatment of the disease, but there are always side effects. I am trying to come down my steroids, but it is not easy at all. I wish you all the best with your treatment.
many thanks. If they continue to work until June I will stay on them at 37.5mg then speak with doctor. This is all very new to me but will try and make the best of it as I know so many have far worse realities with ra.
I took a long course of prednisolone when first diagnosed (waiting for other meds to kick in) and I'm back on them again now for a flare. I didn't gain weight or get moon face but I was careful about sugar and salt intake. I admit that it was really hard coming off the prednisolone (after about 10 months) and I swore I'd never take it again for that reason but at the end of the day it takes away the pain like nothing else and so I'm back on it again now. IMO it's a great drug if used correctly.
thank you. I have cut out as much salt as possible as I have high blood pressure and I only use stevia, unless my sister in law is baking. She is an amazing chef. But I live an hour and a half away.
Be very careful with being on prednisone long term. My previous loony Ra dr had me on 25-30 mg per day for many months! each month when I saw him and got on that scale was dreadful 5lbs, 10lbs, 20lbs, 30 lbs, 40 lbs! Moon face, my long hair broke off all around my crown, hair basically stopped growing and did not have to shave my legs for over a year! 2 huge bumps inbetween my shoulders and neck! I actually was diagnosed with man made Cushing Syndrome! It was the worse time during the whole Ra process. The pain if I did not take them was unbearable. In the Morning before I took them was the worse. Could not turn on a faucet, hold a coffee cup due to my hands and wrists swollen and felt like glass grinding in both wrists! Could not even lift my shoulders to wash my hair trying desperately to get ready for work. Had to wait about and hour and half before the pain subsided. Was so depressed thinking this will be my life from now on.
My GP told me to get another RA doctor. No one should be on high doses like that that long, My GP had to put me on blood pressure meds and fluid retention meds to counter the damage from long term prednisone use.
To make a very long story short, after staying with the nut job RA dr for 3 years, I did get a new RA Dr. A young woman RA dr! She saved me!
She tapered me down on the prednisone and did triple medication the first 6 months to stop the pain in wrists and shoulders and now two years later just down to one drug Rinvoq. Lost the weight, my hair is getting much better, pain is gone
However, due to long term use, my bones are all messed up with osteoporosis and my jaw bone is so messed up I was told am not able to get a tooth implant!
Oh forgot to mention, my sinuses on left side has holes from tooth roots going into the sinus area from jaw bone loss.
Prednisone may seem like a miracle drug and it just may be if used short term Do NOT stay on it! Believe me! It will destroy your bones!
yikes. What a time you have had. My RA has a great reputation. So I will see. I need to ask a lot more questions. I ‘think’ I can handle the prednisone until June when I see him but am hoping the hydroxy has started to work and maybe I will need something else.
My gums have receded and the enamel in my teeth is not good. Cant afford right mow to address that and it bothers me. All my family have glorious white choppers and I am so envious.
My big plan right now is to get back to walking, dog 1st am, power by myself and again dog.
I hope that helps with slight weight gain but more the depression and fatigue. I found a great indoor walking program you can do in your kitchen or anywhere inside x 30 minutes. Its on youtube.
We need to move our joints as much as we are able. But I realize that its so different for everyone
I am so grateful for finding this amazing group of people.
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