My PMR so far....

Hi all

Diagnosed with PMR late Sept 2019. The symptoms had been building over the previous week's and it took a couple of blood tests to convince GP diagnosis was sound ( on further reading some people never have blood indications so for me I had a couple of extra weeks of things being really bad with no drugs that would help much ).

I was put on 20mg of prednisolone which provided some fairly immediate improvements locked into a cycle that my GP did not seem to have knowledge of. For me.. early on I would get maybe 70% relief by mid afternoon lowering to to 30% in the morning again. The trade in for me was I felt 'wired' from about 1pm onwards ... and could not sleep until 1am only to wake at 5.30 in pain. Not very enjoyable and lack of sleep was not helpful but was the better of 2 evils. Over the weeks though the ratios got better i.e. 80% better in the pm to 40% better in the morning and so on. After 6 weeks or so I am down to 15mg a day and sleeping better (with help of some prescribed anti histomines) with some of the pain back in the morning. I hope that on this dose it will reduce again so I can drop to 10mg in Dec. I am feeling like I am able to track the course a bit now and feel happier about it. That's me so far ..

Reading posts here have helped me a lot so if anyone has questions I am happy to reply with anything I know .

[DorsetLady PMRGCAuk volunteer]

hi,

good to hear things are improving, but a drop from 15mg to 10mg is likely to be too much. Guidelines recommend 15-12.5-10mg - but some find that too much, so just be aware.

Your higher dose has cleared out the built up inflammation caused by the illness but has done nothing for the illness itself - and all the time you have that you will experience a new batch of inflammatory substances every morning. The art now is to reduce SLOWLY to find the level of Pred you actually need on a day by day basis. A drop from 15 to 10 is very likely to shoot past that level.

Have a look at this, might give you a bit more info -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thanks ..

I will mention this to my GP next i see him.. I will try and make sure I have the right mix of doses in case the leap is too far.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

The better idea is to take smaller tapers - because if you go from 15to 10mg you are likely to not know what level you actually need. If that happens you probably have to go back up 15mg and start again.

Try and impress that upon your GP.

[PMRpro Ambassador]

Your doctor also needs to understand that you are not REDUCING, you are TAPERING to titrate the dose - and the experts in the titration of any drugs and particularly steroids will tell you there is a big difference.

In tapering you are looking to identify the correct dose for YOUR disease at the moment - and to do that the drops need to be smaller, never more than 10% of the current dose, and with some rest time between so you know the new dose is still enough. If you are reducing the dose with the aim of getting off the srug that doesn't matter.

Morning pain is perfectly usual - every morning your body sheds a new batch of inflammatory substances that then gets to work creating more inflammation. The antiinflammatory effect of pred lasts between 12 and 36 hours depending on the person. That means for some people the effect lasts to beyond when the next dose is due. For others it doesn't and pain returns in the late afternoon or evening for them. Then splitting the dose works better - but there is no point doing it until you know you personally need it. If you do, it often means you get a better result for less pred - but you have to see.

You are very much in early days at 5 weeks. Most good rheumies leave patients at their starting dose of 15 or 20mg for at least a month, often 6 weeks, and reduce 2.5mg at a time at this stage. After 10mg, at the latest, you need to slow down. There is no hurry - more haste, less speed because if it works it isn't slow: overshooting and having to raise the dose again causes all sorts of problems.

[Yellowbluebell]

My gp was happy.for me to stay on 15mg for 3 months until.i saw rheumy. I was diagnosed oct last year and i am still only at 9mg after both gp and the rheumy advised a slow taper. Your gp is being ridiculous over your taper.xxx

[Daffodilia]

That pattern seems familiar to me - diagnosed Oct 18 - now on 6.5 mg and reducing .5 mg a month - it is good to know we are not alone

[Hidden]

I feel my GP is getting an unfair press here .. he has made it abundantly clear the process can be slow in small steps followed by v small steps below 10mg. I am the one putting the pressure on as I had reached the stage where there was little sign of pain and stiffness @ 20mg but plenty of side effects (at the time seeming sometimes worse than the problem to be solved). So his words were probably you might try 15mg for 6 weeks. In general I think he will leave it to me to report on how it's going and we adjust from there. So far it seems a good step .. some minor morning pain n stiffness back but no where near as bad as the first few weeks on 20mg so i am hoping it will diminish in a similar pattern etc. I have read a lot of posts so am aware I may be optimistic and need to revert but right now I am happy with less side effects and some minor morning pain.. I can live with this.

I an interested in any ideas or research as to causes as well as non (prescription) drug alternatives to recovery. As mentioned for me when sleep was deprived I made little progress. Now i sleep well improvement had been relatively more rapid. Even light Exercise sometimes makes the next day worse sometimes not .. behaved like a virus in that respect..

[Noosat in reply to Hidden]

I have had PMR since last December. Started 3 days on 40mg and then down to 20mg. A month ago I had tapered to 3.5 mg., going down half an mg once I got to 10mg. Had a few days of intense stress, so went up to 5mg. now to 4.5mg and tapering very slowly. My GP is letting me take the initiative into my own hands as I know how my body feels. On this amount, I exercise several times a week at the gym, take my dog to park the same and can function doing everyday tasks. My walk lengths are not as much as I would like, but hopefully that will improve. Don't know if this story will help you, but do listen to the pros on this site, and don't rush tapering. I wish we could speed up the recovery of the adrenals, but alas and alack that is not possible. They do what they want.

[Hidden in reply to Noosat]

I guess everyone has their curve and their unique reaction to pred. I get the feeling my reaction may have been different and stronger than most so this first leap has been v positive for my general well-being .. now I am not so agitated I will bear in mind all your kind words and take small steps ..

[Whitner]

Ported I was diagnosed two weeks ago. Doctor put me on 20 mg prednisone for one week then on 15 mg for three weeks until I see her again. I too had a slight return of symptoms but nothing I couldn’t live with until I decided to walk twice what I normally do. All my symptoms returned! I would caution you to take tapering and exercising slow. This stuff, PMR, doesn’t respond like you think it will.

[suracon]

It is important that you ask your doctor to refer you to a rheumatologist who will carry out several tests and teach you about steroids. When reducing your steroids you should do it very slowly....for instance by 1 mg a month.