Steroid advice

[Laceygreen]

I’ve been on 10 mg of prednisone daily since March and was feeling great as I was in so much pain; but I have had to reduce them which I have , and now on 2 mg and all the pain has come back.has anyone been on them for long periods and for how long can hardly walk because of swelling . Thankyou

[Lolabridge]

I have been on Prednisolone since diagnosis more than two years ago. I’ve been on 7mg for a year and just started a taper programme because the Rituximab is working well for me. I’m going to try to get off them altogether but my consultant has warned me it may not be possible and 3 or 4 mg may be as low as I can go. Perhaps 2mg is too low for you if your pains and swelling are back. I suggest you let your specialist know you’re suffering and ask for advice.

[Esmereld in reply to Lolabridge]

It’s hard sometimes to get right off them. You might need to increase again for a week or so and try again. It can take months. Don’t put up with the pain. Have a chat with one of the nurses in your team. They will advise you. This is very, very common. Keep some notes in your diary too. It really helps to see patterns.

[Lolabridge in reply to Esmereld]

Thank you I will. Unfortunately I can’t tolerate MTX so unless the Rituximab can do the job by itself I think the consultant feels I may need the Prednisolone for a long time. ☹️

[Angels54]

Yes experience the same the pain is terrible speak to your rhuemy nurse.

[oldtimer]

It does mean that your disease is not yet under control. Let your rheumy team know and you might need to go up a bit on the steroids until it's better controlled.

[Hidden]

Hi, I’ve taken steroids for numerous years off and on. My longest time on them was 3yrs. I’m taking 5mg at the moment as every time I try to reduced them like you all the pains return, but I’m quite happy taking 5mg as it gives me a better quality of life and I’m able to get about with less pain and stiffness. It’s all about finding a balance that suits you, have a word with your RA doctor about long term steroids and decided for yourself what you prefer. Good luck! 🤗X

[Sparrowtracks]

Oh, I feel for you! I’ve been on pred for almost 3 years and am having to taper off. My doc had me go down 1 mg. At a time, but when I got to 2, my body would freak out. So I’d alternate between 2 and 3. I’m now actually alternating between 1.2 and 2 and doingOK. It has taken me almost a year to reduce from 5 mg to where I am now. I even had a STIM test done to make sure my adrenals were still working—they were. Hang in there and keep talking to your doc.

[Empress30]

I was on prednisone for 10 yrs. Started on 30 mgs went down to 1 mg. Slowly went off. I guess I though if I went completely off I would be in pain. Not the case. But i was on mtx and Xeljanz . The only thing while on prednisone I gained alot of weight. as I went down it came off. I don't have the water retention anymore either. Consult your Doctor for other meds. Hope he suggests something that works.

[Lolabridge in reply to Empress30]

Yes I’m hoping to lose weight too as I reduce the Pred!

[IslandLife53]

Bless you. I totally understand the continued pain and swelling issues. I read the other comments and totally agree with meeting with your specialist. I have always claimed that prednisone is an “evil” medication because I suffer from every side effect. It’s a double edged sword for me. But it’s a medication that is a necessary part of treatments for RA and asthma. I have taken it as a loading dose regimen and also daily doses for a specific time period for over 20+years. I have recently discovered the long term side effects of prednisone; it contributes to cataracts developing at a faster rate, pancreas issues (monitored for Type 2 diabetes).... a necessary “evil.” Presently; I am prescribed prednisone for only flare ups. Biologics did not work for me and I was having many flares. I’m now taking DRMDs, with no flare ups! So, maybe adjusting other medications used for RA may benefit you to the point of no prednisone (with doctor supervision). At one point; I was taking 60 mg a day with minimal relief. I feel your frustrations. It does take time to find the best treatment plan for every individual so I keep a notebook to use at my appointments to report changes, if any; and questions to ask the doctor. For me, I prefer to stay away from prednisone and use it as a last resort. I wish you continued strength and patience with managing of medications, the pain and the swelling. It is a challenging journey.

[Ruth12345]

I feel for you.

I'm down to 3mg & 2mg alternately. I'm struggling. I'm waiting for a rheumy appt so I'll discuss it then if I can't wait till then I'll go back up to 3mg. It has taken me since Jan to get this far. I stumbled at 2mg last time I got this low.

I wish you every success.

[Plumcrumble]

Hi, it's a difficult one, I've been on steroids for 40 yrs, and don't know if I could have coped without it over the years. I agree it's not ideal to be on it long term but drugs were very limited when I was diagnosed. I wouldn't worry have a word with your rheumatologist and you can sort it out together, if you both decide to increase the dose again, come down again very gradually, hope your feeling better soon

Best wishes Sarah

[madme1]

Hi Laceygreen, I started on 10mg of prednisolone, and couldn't handle it, the pressure in my head was horrendous. I couldn't hold my head up and thought I was going mad. I went back to the hospital and remember crying someone help me in the waiting room. Id been having nightmares and all sorts from it. Was called into to the doctor, who totally dismissed my concerns and said it wasn't the steroids causing the pressure but I persisted and eventually he looked in his bible and read oh yes can cause increased inter cranial pressure, reduce it down to 7.5mg next! The effect was almost immediate the pressure stopped and the nightmares decreased. I then managed to get it down to 5mg, but couldn't go any lower as fluid began to increase in my ankles and feet as well as the other joints. It can also increase the fluid around your heart if you go too low. Sorry to be the bearer of bad news, but that's my experience and it may be different for you.