Help with final taper

[Glynbo123]

Hi

I am a newby on this site and I am looking for help with a final taper. 5 years on Prednisolone and last few years on 7 mg, apart from mini flare ups.

I just cannot get totally off prednisolone. I have had several different doctors in the UK but I find that they are not much help. The 2 specialists I have been sent to over the years were even less helpful.(keep tapering, keep fit and keep taking the associated drugs and vitamins for prednisolone.

I do still suffer pain, stiffness and shooting pains which worsen if I taper so I can only assume that I still have PMR.

[SnazzyD]

Hello there, what sort of tapering have you done and what do your flares feel like? Including not just pain. What’s is the lowest you’ve got?

[Glynbo123 in reply to SnazzyD]

HiThanks for your reply, I normally taper by 1mg per month and I was on 5mg for a few months a year ago.

I do get general pain and stiffness during a flare up but it is the exhaustion and lack of muscle strength in my hips that makes it worse.

[SnazzyD in reply to Glynbo123]

PMR aside people often find these low doses problematic. It can expose long term muscle weakness, old niggles we’ve forgotten about, poor posture and most of all low adrenal function. An article, has already been suggested on the latter which made me feel permanently fluey achey and exhausted for months until my adrenal function returned. This is another issue that docs rarely acknowledge and don’t tell you that 1mg per month can be too fast. I was doing 0.5mg introduced slowly over anything from 4-12 weeks depending on the dose. The lower I got the slower I got which helped me over the line to working adrenals. The last 1mg took a year. The absolute worst was 7-5mg, then 3mg was so much better. After that it was a struggle again but I just kept plodding on.

[DorsetLady PMRGCAuk volunteer]

Not quite sure what the issue is…is it because you tapered too quickly - if so a slower plan may help - such as this -

healthunlocked.com/pmrgcauk...

Or if your adrenals are stuttering - this may help -

healthunlocked.com/pmrgcauk...

But a more more specific info as requested by SnazzyD would help us to help you.

[PMRpro Ambassador]

Just because you have a diagnosis of PMR it doesn't mean it will be gone even in 5 years, By 6 years half of patients have got off pred - some in a year, some a lot longer. But the other half need pred longer - and at 10 years, 40% are still on pred!

practicalpainmanagement.com...

is an article about the work, the link to the original paper is at the bottom.

At 7mg there are two problems to overcome: the inflammation of PMR and the return of adrenal function

[Glynbo123 in reply to PMRpro]

Thanks for your help, I am going to read the article you sent.

[DevonMichael]

Like you I also had 5 years of prednisolone and this consisted of 3 tapering plans, first for GCA and then two bouts of PMR. This week is my 38th week of no prednisolone. I am a little creaky with low energy but this may be a combination of age and lockdown fatigue. The important thing for me is to mark off weekly on my calendar no prednisolone, alendronic acid and calceos tablets. Hope this gives you and others some hope for freedom! Good luck.

[Bonedead]

Hi Glynbo , I've been on prednisolone for 27years , my RA has never gone into remission , I had my 40th yes 40th operation in sept 2020 , after a while your body stops producing its own steroid , your constant flares could be a sign of this , my current dose is 10 and 7.5 mg , just found out I've got osteonecrosis after being on fossamax for 7yrs (another red flag , now known as Alendronic acid ) I've just sold my business and retired , (I'm 60 ) it's hard to find the right path when your in pain , but keep moving and do everything while you can , I felt much better on biological drugs I started on those in the year 2000 it made a big difference to me , hope this helps