The slow slow method for PMR

[paintpots]

Hi I have had Ploymyalgia for 18 months and had several setbacks.

All because I wanted to stop taking the pred. My doctor and ruemy have both said it was up to me when I felt like dropping the dose. What do I know?

I have had 3 flare ups and 1 case of scleritis in my eye as a consequence. My last attempt at stopping was when I was on 1/2mg a day and foolishly thought Ohh I am done with this. 3 days after going on a no tablet day I had a flare up and went to 1mg a day. That was 3 months ago and I still have aches in my legs and hips in the mornings

The slow slow method over 11 weeks seems so sensible to me now, why has no one suggested a slow reduction before?

My question is, I am slowly improving but do I wait for my symptoms to reduce to nearly nil before I try reducing again. ?

After my earlier failures I am in no hurry to reduce, but when is a good time?

[DorsetLady PMRGCAuk volunteer]

Oh dear….18months is not long in the PMR scheme of things despite what your doctor may have told you, or you may have read elsewhere….PMR is a self limiting disease, for some it may take 2 years as touted, but for a lot more it can take anything between 4-6 years.

Once on steroids, you are not reducing relentlessly to zero, you are trying to find the lowest dose that gives you same relief as your initial dose did….for some that takes longer than it does for others.

I would suggest you go up to 5mg for a few days (7-10) to clear out the accumulated inflammation that has been allowed to build and

then maybe drop down to 2 or 3mg - assuming you felt good at those doses.

Then reappraise your tapering plan…0,5 mg a time and maybe a slower tapering g plan - see these links for a couple-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

And remember, there really is no rush, you are on such low doses you are at very little risk from side effects.

[paintpots in reply to DorsetLady]

Thank you so much for your comments. I am reluctant to go to 5mg, I was on 4 mg when I developed scleritis and that was so painfull, it made the P.M.R. seem nothing. If Only! And I was told it can re-occur. I was put on 30mg to clear the scleritis. It has been an up and down journey for sure.My rheumatologist said to only go up to the dose that I was last clear of pain and that was 1mg but It is not working.

Perhaps I can try 2mg or do you think a bigger dose is better.?

My doctor is very blasé about my doses and the rheumatologist has just said I have no inflammation so he does not want to see me again!

I do feel that I am left to my own to sort this out.

Thanks

[DorsetLady PMRGCAuk volunteer in reply to paintpots]

Ok, then try 3mg initially…for same timescale as suggested…. and see if that helps sufficiently. Longer if necessary- but then slowly reduce, 0,5mg every couple of months provided no return of symptoms.

As I said really no rush at such low doses…and as many of us know 0,5mg really can make a bit difference.

[PMRpro Ambassador in reply to paintpots]

I agree with everything DL has said - I understand you are reluctant to go to 5mg, but why not try 5mg for a week and see if that eases the aches you have. Then drop straight to 2mg - it will be fine. That week of 5mg is a way of clearing out a bit of a flare from overshooting you dose which is what happened. Then if 2mg is OK you can start again on that last bit. Maybe you need 1mg, maybe 1/2mg will be OK but at this stage the % change in dose is enormous and your body is just getting snappy about losing its "fix".

[paintpots in reply to PMRpro]

Thank you for your welcome advice. I have today started on 5mg for a week, then I shall drop to 2.5mg because I have 2 boxes of 5mg and I can break them in half easily.How long should I stay on 2.5mg before embarking on the slow reduction? I am thinking 28 days!

The time scale of 18 months plus is no problem now I know that this is a long term issue.

My doctor told me I might be on pred for 12 months! Huh!

[PMRpro Ambassador in reply to paintpots]

Huh indeed!!!! I have lost count of how many people were told that and found it didn't apply to them!! Trouble is, it is rarely the doctors who have to admit it isn't always so ...

[Abbey17 in reply to paintpots]

Dorset Lady & PMRpro are always spot on with advice. I was like you determined to come off. Unfortunately my old attitude of working through and beating things doesn’t work with PMR. You need to change strategy and work with it. Slowly slowly. Also I had 3 bouts of scleritis - they didn’t up my daily dose but gave me 10 days of steroid drops which worked. I’d got down to 5 and was so happy but. It was too soon and I am now more cautious. Might be worth checking which GP in your surgery has the most knowledge on PMR it makes a big difference. It’s clear by reading people’s experiences on here that there is a big divide in GP’s understanding.

[paintpots]

The opthalmic doctor who eventually diagnosed scleritus said it was linked to the polymyalgia but was more commonly linked to rheumatism.I was just glad that it was diagnosed before it did irreparable damage to my eye.

Thank everybody who has replied. It is such a relief to find more information on how to treat this condition.

[Viv54]

I like you have had many problems/ flares with trying to rush it , im atm on an increased dose because of this very reason ! I have read but not always listened to the fantastic people oh here, but i can tell you i do now and am really following their advice . You really can not rush Pred it never works ! The slower the better, they know far more than i do! Do yourself a favour and take their advice it really works ! Good luck . Viv🌷

[cycli]

echo everything said here. Good luck. I am at 30mg and feeling the best in over a year. Now ready to begin MY journey dropping down. I fully intend to go at the slowest pace staying safe. I'm NEVER going back to how I felt at the worst ebb.

[paintpots in reply to cycli]

Wow Cycli you have had some journey. Mine has been mundane in comparison. My beef has been the lack of information from the NHS whether from doctors, rheumatologist or on line. I didn't know that polymyalgia can take 6 years to subside and two years is a good outcome or that the steroids just mask the condition or hold it in check, that's why you get relapses when you reduce the dose. I am happy now to have a 2 year time span to get to zero or close to zero from 2.5 mg a day. So slow but I don't care, the downside of relapses is worse, so no rush.

Good luck.

[cycli in reply to paintpots]

cheers painitout. \Funny you say that because that's how I feel when I read some other peoples journey and feel ~I am lucky. After all, we are still here and kicking and have every chance to improve our lot. Sadly the NHS needs a step up into prevention and joined up disciplines and a little less egos and talking down to patients, but for all that they do care and do try hard. All in all I am grateful but will still argue my corner against all and sundry. I'm all I've got. One shot and not wanting someone else to decide what I can and can't aheive through their arrogance or ignorance.