Hello All, am posting on behalf of my older sister (82) who’s a bit of a technophobe and social distancing/geography means I can’t be on hand to help..! Following some alarming health problems for her husband she was struck down a couple of weeks ago with the usual symptoms we’re familiar with: couldn’t get out of bed, get dressed by herself etc. Presumably due to the pandemic, she could only have a telephone consultation with the duty GP (not her own) and was prescribed 60mg/day of Pred...... this was to be tapered at 5mg/day until the supply was exhausted - and that was to be that......?! No blood test to review inflammation markers and no referral to a rheumatologist? At my insistence, she telephoned the GP (different one on that call) to see what she was being treated for(!) and was told PMR.
Am not sure how to advise her now - obviously at that starting dose, she felt fine within 24hrs and she’s simply wanting to see my brother-in-law getting the treatment he needs (prostate op). Presume a blood test now will not reveal raised markers?
Any thoughts/advice welcome - apologies for the long post!
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Rokerman
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Oh dear. What mess up. Obviously your sister will be flying at the moment (good or bad). If the Dr won't change it and your sister is minimising her symptoms now they are controlled there's little you can do in reality.
Did the second Dr not review the treatment protocol? It is hard to get your sister to deal with it in the current circumstances. Blood tests after a couple of weeks 60mg down will be/should be normal. The only thing in reality you can do is support her. When the pain comes back (if PMR) then gently persuade her to contact the Dr. The Dr needs reminding this is not the recommended treatment. Sorry I can't be more helpful at the moment. Others may be more so. 🌻
One, I am not medically trained at all..............but this might just help you to gain some knowledge. Others will be along, who know much more than I do.
I am surprised that neither GP did a home visit...........there is nothing to stop them visiting patients who need to be seen. Hospital Labs are still doing blood tests. In spite of the virus, the NHS is and will deal with ongoing and new health problems.
I am surprised that they gave her 60mg.............if it is PMR then the starting dose is 15mg-20mg.
The blood test would have been useful, but both the CRP and ESR, whilst are an indication that something is going on and they have to find out what, in some people those markers are never raised, so the symptoms have to be acted on.
This is the link, which is easier to give at this time, but it is on the right had side Pinned Posts.
If it is PMR - can you persuade her to drop to 20mg NOW? You know as well as we do that 60mg for a few weeks isn't going to do much once she stops so there is not point and it would make it last longer as well as being better for her.
The diagnosis is a clinical one - symptoms and history and hers is typical, stress and sudden onset of the right symptoms. Blood tests are just another brick in the wall. So is response to pred but NOT 60mg, most things would respond to that!
Any chance of her getting that GP again? And seeing if he knows the correct way to manage PMR. She is unlikely to see a rheumy this side of xmas if most things are anything to go by and if it is PMR - i.e. there are no symptoms suggestive of GCA - she shouldn't need to. But with a GP like that ...
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Thanks PMRPro - I wish I could visit to have a one-to-one talk - I did try to encourage her to join the forum but I feel that the instant 60mg-induced pain relief has seen her put her own problems on the back burner....! Will have a serious talk.. Interesting tho’ is the stress & worry with her husband seems to have been enough to bring on the PMR extremely quickly - quite a few of our group feel this a major factor?
It is just that SOMETHING is the final insult to the immune system and it goes haywire. It is said by some that by the time you get to your 80s at least half of people are likely to have experienced the joys of PMR! There are so many elderly with it it skews the average age figure to seem high.
My GP started me in the same way. Obviously, I now realise, the pain came back when I'd finished. I phoned and he prescribed more Pred and referred me to a rheumatologist. So maybe your sister's doctor is expecting her call.
Sounds familiar (to me). My GP used a 60 mg dose to validate the diagnosis of PMR.
But. I was immediately taken off the 60 mg dose and tapered down in a week to 15 mg. PMR pain returned so the Pred dose was increased to 20mg where I stayed for 6 months. That was 2 1/2 years ago.
Never got a blood test. It's my understanding that a blood test is almost worthless once you are on prednisone.
But the real point is that 60mg pred DOESN'T validate the diagnosis - it is far too high. The characteristic they base that on is that PMR is unusual in rheumatology in responding well to a moderate dose of pred. Almost all inflammatory arthritides would improve on 60mg. And even cancer patients might feel considerably better on that sort of dose.
I met a lady in a local PMR support group who was diagnosed while on holiday in France. The Doctor there said they prescribe 1/2 mg of Pred per kilo body weight as a starting dose, so if you weigh 60k you start on 30mg etc. Ive never heard anybody mention anything like that in GB, the max start dose I have come across is 25, unless they also suspect GCA, but if that's the case you need other diagnostic tests eg US or biopsy.
Seems a bit OTT. I would have been started on nearer 40mg at the time, I had gained so much weight over 5 years of reduced activity. In fact, 15mg was plenty to get things back to almost normal. OTOH - if you start on that much, I wonder what the rest of the journey is like for a majority?
Yes I'd have started on over 40 too, whereas I was started on 10 and started tapering down after a month. Things were great to begin with, the usual miracle many describe, but I was in so much pain for the next few years once they lowered the dose to 5 where I was then stuck. Unfortunately I didn't find this forum until 3 years later. Mind you that woman I met did go into remission in just a few years if I remember right and hasn't had any relapses so maybe French Doctors get it right? Whereas I'm going into my 9th year. It'd be interesting to know how different countries compare. I'd bet Germany gets it right!
What has always exercised me is that having given me the pred that made such a difference, the rheumy then wouldn't countenance PMR as a diagnosis. That meant I stopped and started and messed about with the dose - and never got below 10mg easily again. Then I had a dodgy batch of enteric coated and was going to run out - not available here so was switched to methyl prednisolone. And that just didn't work at all so I had a major flare, not just a little one. No accidental flares since going on to Lodotra but have only reduced to 5mg once, lasted a few months. How much is due to 5 years totally unmanaged PMR and the flares since?
You and I have had many similar bad experiences over the years, about the same age when PMR struck (51), a long time to get a diagnosis, not enough steroids initially, my first rheumy dismissed me because I was 'too young to have PMR' - at 54 by then after 3 years on steroids and finding it impossible to get below 5.
Finding you and this forum literally saved my life then as that idiot rheumy put me on a very rapid steroid withdrawal plan which looking back I think led to adrenal problems, I felt so ill, like I was going to die. With the support and encouragement of this forum I moved to a different rheumy who is supposed to be an expert on PMR but still refused to believe I had it and wrongly diagnosed first psoratic arthritis, then ankelosing spondylitis and then fibromyalgia. Afer I pushed for a PET scan PMR was eventually, grudgingly confirmed. I've had to battle for effective treatment now for so long it's made me into a warrior - I now fight for better threatment armed with the info I get on this forum and volunteer on the PMR Helpline to 'give back' and help others struggling not only with this baffling illness but a medical system largely ignorant of how to treat it.
I've not seen many posts from Germans on PMR forums though, yet there are loads from Brits, a few from Aussies, some from Canadians and the majority from Americans. I wish my German was good enough to go and do some research of what they do there! And move there!
They ARE doing a lot right, but that hasn't stopped the increase in cases here in Germany. What I don't understand is why so many politicians are pushing for earlier release from lockdown. Let Merkel have her way, she seems to be on the ball.
Moving here 47 years ago was the best thing (for us) that could have happened. I've no desire to return to England.
Oh, I see! Then the answer is a definite YES. Of course we have rheumies who can't 'listen', the odd doctor that obviously has never heard of PMR but, on the whole, we do very well.
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