New to PMR Question

[Raingod]

Hi, only been diagnosed with PMR just over a month ago. GP started me on 15mg pred. initially for 3 weeks .

Did well and symptoms reduced by around 60-70%, I was extremely happy to be more mobile.

Review day came and GP was equally pleased with my progress and immediately reduced the pred down to 12mg.

A week later and my symptoms are getting worse again. Hip and leg pain and stiffness, neck and shoulder pain/ stiffness, headaches (back of head) and so tired. You all know the score.

My question is, is there a standard/ recommended way to reduce the pred? Or is it just trial and error in doses arbitrarily decided by whichever GP you manage to see on the day? (I’m trying to get a return appointment)

I get they want you off steroids as soon as possible, but at what cost? I’m finding it increasingly difficult to work and increasingly frustrating not being as mobile as I’m used to.

[PMRpro Ambassador]

Hi and welcome!

"They" may want to get you off pred asap but "they" aren't in charge. The PMR is and until it chooses to burn out and go into remission you will need some pred, enough to manage the inflammation at any given time.

You are started at a dose that is hoped will be more than you will need ongoing - but 15mg is near the bottom of the range for starting dose and may not be enough to clear out all the accumulated inflammation. 70% improvement is the least they should look for to confirm the diagnosis but they really should be looking for more relief before starting to taper the dose, 3 weeks at 15mg is rarely enough and I would say in your case that INCREASING to 20mg would have been better idea. Unless you have had a good clean out there is no buffer to allow you to taper and actually, dropping by 3mg at one go was asking for trouble. 2.5mg is the usual and for many even that is too much. Some can only manage 1mg at a time.

What concerns me is the headache - that can be a sign of GCA so you do need to get some medical advice and your markers checked. If you have raised markers, the starting dose should be stuck to until the markers have fallen as far as they are going to before reducing the dose.

There is a section on Tapering under T in the FAQs - there is a link to the main page index of them at the top of every thread under the post.

[DorsetLady PMRGCAuk volunteer]

For the record I agree with PMRpro, not long enough on initial dose, and probably should have been higher especially as you had less than 70% improvement which is generally the criteria quoted. Followed by too fast a reduction.

Add in the fact you are still working and no wonder you are struggling. Please get your headaches checked out .

Maybe have a read through this so you have better understanding of your illness -

healthunlocked.com/pmrgcauk...

[Raingod]

Thank you both for the useful advice and comments. Found my way to some very useful reading material thanks to your signposting. 👍

GP doesn’t think the headaches are connected or a Sign of GCA as they are not in the typical temple region, but I will be mentioning them again on my next visit.

It’s so difficult/ scary going from being fit and healthy, running and cycling to not being able to put my socks on so quickly lol

And if one more person says “It’s just old age catching up with you” I’ll scream!

(Because it hurts to much to punch them 😂)

[Sophiestree in reply to Raingod]

He needs to consider LVV as well as GCA as my symptoms were vice grip headaches but not classic GCA

[PMRpro Ambassador in reply to Raingod]

"the typical temple region"

He does need to bear in mind that GCA can also favour the occipital region and while not the majority, probably as many patients with occipital headache as temporal hedache as the presenting complaint.

pubmed.ncbi.nlm.nih.gov/199...

GCA doesn't have a fixed in stone presentation - I saw one paper with figures for presenting complaints and several, including the two types of headache, scored about 17%. The figures of 70-90% aren't for presentation but for overall, headache that appears at some point, sometimes much later.

ncbi.nlm.nih.gov/pmc/articl...

[Polygolfer]

Hello, I had a similar pattern of attempted speedy reduction as you are experiencing. My ‘rapid’ reduction worked until I got to 5mg then the body said ‘wait’, too fast!‘They’ do this because in some people this rapid reduction works so it’s worth trying, especially at low doses like yours. You are right ‘They’ always try to get you off steroids as soon as possible and it’s for very good reasons. Doesn’t look like it could be a quick fix in your case but for what it’s worth I would immediately ask for a referral to a Rheumatologist, who ‘should’ have more experience and understanding on how best to treat you longer term. Best of luck!!

[scrambledegg]

I had a headache at the back of my head too when first diagnosed with PMR. I’d never heard of GCA at the time so didn’t have that worry. I could barely lay comfortably on a pillow. But the right amount of pred. (15mg in my case) sorted it. I have been left to my own devices to reduce pred. as and when I feel able so hopefully you may be too. Very slowly is the answer.

[Potemkin]

I started on 15mg and the symptoms were relieved by about 70% in 6 hours. However my energy was rubbish. The Dr suggested reducing the dose after 4 weeks but I refused. I was just getting my life back.

Prior to this I was running 3 x a week, doing yoga and had a pretty good diet. I realised i needed to completely rest which I did for at least 6 weeks. I gave up all extra exercise and managed my energy by taking rest days.

Gradually I reintroduced my running - literally 5 mins. I could have done more but realised it was fine at the time but the next day I really felt it.

After 2 months I went to 12.5mg and 4 weeks later I'm on 10mg. I tried to make sure that the week I reduced that I did less and built it up again. I'm now expecting to reduce by 1 mg every 4 weeks if progress is good. Very frustrating but that's the way it is. Will have to see how it goes

I'm now back running 3 x a week but shorter distances, doing yoga - managing a full class class now. However I still do get tired so watch that and take time out if needed. I'm learning patience!