Try do reduce again?

[lesley2015]

Good Afternoon

Just wondering if anyone has any advice.

I have been on prednisolone now for 10 years, (PMR and GCA) and over the past 4 years or so repeatedly tried to reduce down from 5mg.

Unsuccessfully.

I was down to 2mgs last year, felt awful and my ESA was up from 20 to 36, the Rheumatology nurse said to go back up to 5mg and probably accept to stay there long term. She explained that my body, after 10 years, could not cope without steroids, and it was a better quality of life to stay on 5mg that feel awful.

My concern is this, if in the future I need surgery for anything will this complicate things? My GP wasn't too happy but did say it would probably not do me any damage.

Any thoughts or experience of this would be much appreciated.

Best wishes

[DorsetLady PMRGCAuk volunteer]

If 5mg gives you good QOL and both Rheumy dept and GP [albeit begrudgingly]… don’t have problem, then why would you.

You may find in future you can reduce to a slightly lower dose, but for now just go with it - and have a better life.. being in constant pain is very debilitating both mentally and physically.

[PMRpro Ambassador]

There are millions of people in the world who are on life-time pred for their illnesses. A dose of 5mg is about the same as your adrenal glands produce in the form of cortisol - the corticosteroid is essential to life. While you are on that sort of dose of pred, your body doesn't produce much, if any, cortisol, the pred does the job. In the even of extra stress, you may need some more steroid in line with the Sick Day Rules. Should you need surgery, the anaesthetist will deal with that. There are surgeons who would prefer their patients not to be on pred but they all accept that needs must.

You obviously have a very sensible rheumy nurse - hang on to her!!

[pmrdec112014]

Hi.I am in a similar position to you, though did not have GCA, having had PMR for just over 10 years now and the lowest I ever got by December was 2mgs, with several flares along the way.

I am now back at 8 having had a huge flare back in December leaving me in agony..( probably the worst episode actually)

My rheumy always says that " if you had to stay on 5 for life it wouldn't be the end of the world "

Despite this I was always trying to reduce but now the likelihood is that once I get to 5, the lowest I have ever been ok at I am sticking there for the foreseeable.

I have also had surgery 2 years ago and told the anaesthetist re pred and they gave me extra steroids during the surgery and all was good.

As PMR Pro and Dorset Lady both say QOL is key! I have been very slow to realise but time spent in agony isnt worth living far better less time and pain free because that PMR pain is worse than any other pain I have had tbh!

Best wishes.

[PMRpro Ambassador in reply to pmrdec112014]

It may not be a 10 on the pain scale - but it is the fact it is always there and affects everything you do isn't it?

One of the rheumies at my hospital was doing a study about why the patient's pre-appointment assessment of their PMR disease activity almost never matched their clinical examination assessment. I spent quite a while trying to explain to him that you don't often get painful joints in PMR - and they use the same examination technique as they use for inflammatory arthritis patients. That results in a lower disease activity score - and it doesn;t take into account that a constant score of 3- 4 may not sound much but when it is there every day and nothing really gets it out of the way it simply saps your resistance.

[pmrdec112014 in reply to PMRpro]

Yes that's it exactly!If the pain isnt controlled it is in every single movement and it's such a hard pain to explain to those that havent fortunately experienced PMR as completely different to the pain you get when you have over done it on the exercise front!

[lesley2015]

thank you all for your reply’s, all very sensible.

I guess it’s just the constant desire to be off steroids etc., but yes quality of life is so important.

thanks again and best wishes to you all 😊

[Nap1]

hi. Lesley 2015. I have been on prednisone since 2012 for PMR andGCA. Able to reduce very little. I go down and don’t feel well at all so I go back up. At this stage, I don’t have much left to call adrenals. So the bottom line I am on 0.5 of dexamethasone for my adrenals. Also on Actemra. My esr is back up to 38. Will say my roomie say my rheumatologist I hope this right now my is in bad shape from a fall. That is very bad shape and I’m hoping not to get infected. I guess what I am trying to say is with these types of We just have to keep plugging away and let the chips fall where they may. There are no specific answers, but to consider this I am 83 this month. I know not where I am headed. I do know the road behind me was bumpy. I am presently with a walker and sometimes a wheelchair looking to regain some strength at this juncture. It’s been 13 years and I am no longer in a hurry to go anywhere. Just keep plugging along. Keep your chin up.

Marilyn Redder, Florida, USA keep in touch😂

[lesley2015 in reply to Nap1]

Hi Marilyn

Aww bless you - sounds like you have had a difficult time - it’s not an easy condition to live with!

I was diagnosed at 55 and now, almost 66, I feel frustrated that things I had planned are realistically too much for me. But, I realise others have it far worse!

Take care of yourself and thank you for taking the time to reply.

[MKCOregon]

Hi Lesley and others.....I am also a long term PMR sufferer. 10 years this year. I was at 20 mg for several years and could not reduce without all the symptoms coming back on me. I just kept trying and at least now have made it to 14mg but don't really feel that great most of the time. I found this forum shortly after diagnoses and it was what taught me the most about PMR and learning to live with it the best I could. I never post anything much but when I read of others having such long term PMR thought I would join in the chat. Early on I tried multiple avenues to try and reduce the Pred (Methotrexate, Leflunomide, Actemra) but without success. I am in the process of going on Kevzara however and have hopes that this may be what helps. Prednisone is a wonder drug but wreaks havoc on one's body in so many ways. However yes we all try for the best QOL.

[PMRpro Ambassador in reply to MKCOregon]

Were you able to take Actemra for long or did it make you unwell? If you couldn't get your pred down when on it, it really does suggest you don't have the PMR we discuss here which is not only pred-responsive but the main inflammatory mechanism is due to IL-6 via which Actemra and Kevzara work to reduce symptoms. PMR isn't really the illness - it is the name given to the set of symptoms which have an underlying cause and there are several, not all of which response to IL-6 inhibitors. Has your rheumy investigated other inflammatory conditions?

[MKCOregon in reply to PMRpro]

If I remember correctly, I was on Actemra for about 8 mos. At first, I did go down a couple mg of Pred but then could get no farther, so I stopped doing the infusions. Maybe I didn't give it long enough as I think it was probably my decision to stop. I can only say to your question about other inflammatory conditions being investigated is that much testing was done when my symptoms first began, and it took months to come to a consensus that it was PMR. When I was put on Prednisone within a week, I was free of all symptoms. Can you tell me some of the specific conditions you are referring to? I do remember asking her quite a few years back if I could possibly have something else other than PMR and her telling me not that she could determine according to my tests and her exams. So there's that. My symptoms have never changed since the beginning. I do any decrease in Pred slowly and always give plenty of time for my body to adjust to the lower dose. My current dose of 14 mg daily is my lowest achieved over 10 years.

[PMRpro Ambassador in reply to MKCOregon]

It is just the lack of response to Actemra that does have to set the question. But no doubt there are people it doesn't work for for some reason.

[proactive]

I had to have an emergency hip replacement after a fall (fractured neck of the femur) while on 10 mg of Prednisone. No problems with the surgery. The Doctor just flagged my chart for extra infection prevention practices as my immune system may have been somewhat suppressed by the Prednisone. No infections happened. Good surgery result, did all the physio exercises recommended and am walking pain free now.

[Pinkcuffs]

I'm 77 now and I know how difficult it can be reducing pred when you get to the low doses. I struggled and see-sawed. But I was able to have 2 hip replacements - with 1 year between, so long as I was below 10 mg. So I shouldn't worry about the possibility of future surgery. Just stay as comfortable as you can in the present.

[lesley2015 in reply to Pinkcuffs]

That’s reassuring- thank you