Any advice / ideas please?

Hi,

Wonder if anyone has any ideas please ?

Diagnosed with PMR last Autumn & responded swiftly to 15mg prednisolone. I was almost 100% better by Xmas.

Sadly since the New Year things have not gone so well & I have been mostly deteriorating slowly ever since.

I tried a 0.5mg reduction at the beginning of the year, but felt worse again so went back to 15mg.

I was referred to a Rheumatology Consultant, who asked me to do an alternate day reduction to 12.5mg. Three days in, I was so very much worse that I stopped trying to reduce, but the deterioration continued for 4 weeks. Since then I have had good spells & bad spells, but I haven't been able to get back to anywhere near where I was at the end of last year.

My consultant says that my symptoms don't make sense. Initially she thought that the PMR might have triggered rheumatoid arthritis. But after various tests she no longer believes that. Now she says that I have fibromyalgia, but I don't believe that to be the case. My best friend had fibromyalgia & so I know that pain alone does not constitute fibromyalgia & I have none of the other appropriate symptoms. The consultant has now referred me to Endocrinology.

After doing my own research, I have spoken to my doctor about the possibility of Sub Clinical GCA & he has referred me to a Vascular Consultant. An appointment is not available until the end of August though.

Since I always seem to flare really badly when I have a period (I am 56 & haven't fully cleared menopause) I wonder if I might have the hormonal variant of PMR, but apart from a reference by PmrPro on this forum, I can't find any information about it at all. My PMR did start just a few weeks after a very sudden menopause.

My symptoms are classic PMR, plus a lot pain in the palms of my hands & the soles of my feet.

My circulation is now rubbish & I seem to have secondary Reynauds in my feet & hands.

The only really unusual symptom I have, is that the calves of my legs & my shins are almost constantly painful. I often feel as though I have been kicked in the shins & the pain in my calves is sometimes so bad that it feels like I might have DVT.

I have basically been deteriorating since Xmas, yet I'm not even trying to reduce my dose of prednisolone. In fact my doctor gave me permission last week to try increasing my dose to 17.5mg. It has reduced the pain in my hands a bit & I seem to have stopped getting worse.

Does anyone have any ideas as to what might be going on, or any information on the hormonal variant of PMR? Any ideas (other than shooting myself - which occasionally seems like the best option!) would be very much appreciated.

Thanks

Sarah

[PMRpro Ambassador]

Even if 15mg was adequate to manage the inflammation at the start, if it was early in the development of the autoimmune disorder that causes PMR/GCA, it may not be enough now. The fact it took from "autumn" to Christmas to get good relief from 15mg suggests that could be the case - PMR typically responds in a few days to the starting dose. However, 15mg is the bottom end of the range and the more recent guidelines recommend the lowest effective dose in the range 12.5-25mg.

rheumatology.org/Portals/0/...

Recommendation 3.

This is probably also of relevance:

academic.oup.com/rheumatolo...

Perhaps your GP would be prepared to try a higher dose to see what happens. If it doesn't work in a week you can drop back to where you were without tapering. Fibro will NOT respond to pred.

I'm far from sure a vascular consultant is the right person to be referred to if it is a vasculitis - they deal with bunged up arteries, not inflamed ones (to put it rather basically). I don't know where you are in the UK - but I think one of the top people is a professor at the Hammersmith (I think!) in London and I'm struggling to remember his name. Perhaps it is worth you contacting the VasculitisUK charity (they have a forum on this site too).

vasculitis.org.uk/

Having searched my messages I think it must be Prof Mason

imperial.nhs.uk/consultant-...

Ask your GP to contact them - or you COULD try yourself.

It's all very well saying "your symptoms don't make sense" - her job is to find out why.

[Hidden in reply to PMRpro]

Thanks for replying so quickly PMRpro.

I did get massively better in the first week, but I was so very bad when I was diagnosed, ie barely able to move at all, that I just kept getting better for weeks afterwards too.

It was the paper you have quoted above, that put me on to Sub Clinical GCA. If its not a vascular consultant who would diagnose this, then who would? There seems to be little joined up thinking between all the different specialities in the NHS.

Have you any information about the hormonal form of PMR that you mentioned in your reply to one if my earlier posts?

Sadly, because I'm already disabled due to a long term spinal injury, I wouldn't be able to travel outside of Brighton where I live. Otherwise I would love to be able to attend the PMR UK conference in Portsmouth next month.

Thanks again PMRpro

[PMRpro Ambassador in reply to Hidden]

Vasculitis is usually regarded as the province of the rheumatologist - PMR and GCA are after all vasculitides. But their knowledge of real vasculitis varies greatly which was why I suggested Prof Mason who is a vasculitis specialist.

I would contact him and ask for a recommendation nearer you - though I'd suspect the choice in Brighton could be a bit limited! OTOH, if you needed to see him - patient transport is an option I'd have thought.

[Mahnahvu]

PMRpro suggests above that the dose you started with may not be the best for you now. Your disease my yet be progressing to levels greater than your current treatment can handle.

Unlike the majority of PMR cases, my symptoms came on gradually. I had pain in the ischial bursa for 9 months and no elevated blood markers. Then over a two month period it gradually progressed to my shoulders, elbows, neck, knees, and even the bottom of my feet. That's when we did the trial dose of pred. After three days I was feeling so good that I spent Christmas eve scrubbing the kitchen floor on my hands and knees, LOL.

At a moderate dose of pred (15mg to 12.5mg) these past four months the bursitis has completely cleared out of my hips, shoulders and elbows, with the only noticeable pain remaining in my calves. I have tried for months to reduce below 12.5, but the pain in the calves keeps making me back off. I may try the super slow method of reducing to see if that works.

[PMRpro Ambassador in reply to Mahnahvu]

That is much the same way mine started, even down to the feet - and how the hip bursitis faded at 15mg and just below. It took a good 6 months. But then I'd had PMR for 5 years by then.

[Hidden in reply to PMRpro]

Apologies for the delay in replying. Usual PMR problem - feeling too rough to do anything.

Do you have any information at all about the hormonal varient of PMR that you mentioned in reply to an earlier post of mine? Anything would be very helpful.

I feel reassured that I'm not the only one that has terribly painful soles of my feet. It doesn't seem to be a very common symptom.

Have just had the courage to reread the consultants letter from last week, which I only initially skimmed through. She states that she thinks I have fibromyalgia. My best friend had fibromyalgia for 5 years & I know that there's no way that's what I have. I think she is just using FMR as a coverall for the problems she thinks fall outside her knowledge of PMR. Increasing my pred dose slightly has reduced my pain & that wouldn't be the case if it was FMR.

I really think I need to get checked for Sub Clinical GCA. I also think that maybe just increasing the pred dose up to /within the 25mg guidelines as you suggest may be beneficial.

I see my lovely doctor on Monday so will discuss everything with him.

Thanks again PMRpro

[PMRpro Ambassador in reply to Hidden]

Sorry no - probably just what I said before.

You might find this thread interesting just to hear what others have experienced. But I still think Prof Mason would be a good bet.

[Hidden in reply to Mahnahvu]

Dear Nahnahvu

Thanks for your response.

Sorry for the delay replying - usual PMR story, feeling too rough to do anything.

I'm very reassured that you also had pain in the soles of your feet & in your calves. Neither seem to be very common symptoms with PMR.

I see my lovely doctor on Monday & will discuss everything with him.

Thanks again

sosarah