Coming off Prednisolone

[Hubsche]

Hi all, this is my first post. I was diagnosed with PMR two years ago, age 54. I was prescribed 15mg of pred and over the last two years managed to get that down to 1mg in October and stopped taking the medication at the beginning of November. Things were going well but the aches and pains are returning. My question for you experienced members is do I persevere without medication for a while longer (I've read somewhere that the body sometimes aches due to the withdrawal symptoms of the prednisolone) or do I jump back on the tablets? My GP lead me to believe this would be gone by around two years but reading some of the posts I'm beginning to think I could be with this for some time. Any feedback appreciated

[PMRpro Ambassador]

"My GP lead me to believe this would be gone by around two years " Apparently a lot of doctors - rheumatologists too - think this. In fact only about a quarter of patients with PMR are able to stop pred in under 2 years, half need more like 4 to 6 years. One third of patients overall still need pred after 6 years.

I wouldn't wait - if it were stopping the pred alone I think you would probably have felt it sooner. Six weeks is the sort of time many people discover that that last 1 or 2mg was keeping a lid on it and without any pred the inflammation has built up to the level you can now feel it. The longer you leave it, the more inflammation will have built up and you are likely to have to go to a higher dose to manage it.

Once you are below 5mg the claimed adverse effects are minimal - according to a top expert at the Mayo they are minimal anyway at the doses used for PMR. In case you haven't seen it:

medpagetoday.com/rheumatolo...

If you were on the 1-2mg level for longer you would be able to see how much effect it was having. I would aim to take several months to get off, going from 1mg every day to 1mg every few days, not all at once of course, gradually. Some doctors will tell you it can't be doing anything, that it is a psychological dependence. If it is - it affects a lot of people! And I know both nurses and doctors who agree.

[Hubsche in reply to PMRpro]

Hi, Thanks so much for your quick reply and the link. I've been doing some more research this afternoon and whilst I did reduce the last 2 and 1 mg doses gradually I think maybe I have been a bit impatient! Will probably look at this again and come up with a better plan. Thanks again.

[PMRpro Ambassador in reply to Hubsche]

My pleasure.

[Soraya_PMR]

Sorry you didn’t quite make zero 🙁

But hopefully soon 👍🏼

[alice1940]

I too was told 2 years l am now reaching 3 years in March l am still on 2 mg ,after the latest blood test was advised to stay on 2 for another 2 months

[Rosedail]

My Mom and I both had PMR in our 50s. She however had PMR 22 years before I did with no direction or support other than a Gerontologist's one time directive to taper slowly off the prednisone. Left to her own devices, she took 1 mg of Prednisone for an entire year (her 3rd year) before stopping it entirely. I weaned myself off of the last 1 mg in about a months time and I wish I'd taken a few months and not been in such a hurry. A year later I am still stiff and sore, albeit at a much lower level than the with the full blown PMR. My Rheumatologist is taking a "wait and see" approach. I think it's a post PMR issue and she suspects I may be developing psoriatic arthritis. Best to you in your decision.

[Hubsche in reply to Rosedail]

Hi, thanks for your good wishes. My mum was diagnosed with pmr after me when i suggested she went to the doctors as she had all the same symptoms I did. She was in her 80s and had been struggling for some time. Perhaps I had better warn my daughter! X

[Hidden in reply to Hubsche]

I think there are a few mother daughter combos. And a husband and wife. I think my father had it in his 80s.

[gragriff]

I started on 20 mg and it took me 2 1/2 years to get down to zero and there were many setbacks along the way. My doctor suggested taking paracetamol instead of increasing which has no effect whatsoever. But unless they have first hand experience they can't possibly appreciate the problem. I would suggest going back to 1 mg or whatever it takes until stabilised then gradually reduce from there. Say 1 one day 1/2 next alternate days again till stable then either 1/2 a day or 1 every other day. After a few weeks at that level then give it another go on zero.

Was 79 when I started.

[Hubsche in reply to gragriff]

Thank You, that's really helpful.

[Ferddie]

I am sorry for not responding sooner. I am 93 and now have some heart problems. I don't spend much time on line.

My last attack of PMG started in the autumn of 2015. I reckon it was about my sixth attack. On all previous occasions my GP had reduced the dose over a period of about 6 months. I decided to look on the internet and found Health Unblocked and also a reference to a paper in a medical journal written by some medical people from Bristol University. In it they recommended that the reduction should be over a period of at least two years and gave an example of the programme they use. It is as follows - 15mg for 6 weeks, then 12.5mg for 6 weeks, then 10mg for one year, then reduce daily dose by 1mg per month. I showed this to my GP and she decided I should go on this programme.

I started the one year on 10mg in Jan. 2016. The following June the skin on my left arm and the back of the hand was like thin parchment with blood blisters. My GP reduced the dose to 7mg and this has been gradually reduced at about 6 weekly intervals by, for example 6 weeks at 6mg followed by 6 weeks at 6mg and 5mg on alternate days. I am now down to 2mg and 1mg alternately. I have regular blood checks for ESR and they have been between 8 and 15. All going well I should finish the programme in about three months time - about two and a half years from the start and I will keep my fingers crossed.

[PMRpro Ambassador in reply to Ferddie]

I do wonder why some GPs don't actually take advantage of a learning experience from having a patient with PMR - nowhere, nowhere at all, does anyone ever suggest PMR should be managed with short courses of pred. I had a similar experience with a GP trying to diagnose what I had. Had he googled the symptoms he would have discovered PMR and that up to 20% of patients present with normal blood markers. I did.

Then they have the cheek to complain about patients doing their own research!