Newly diagnosed PMR patient

After a lot of thought I feel I must reply to this post.

I'm not dissing your suggestions Charles and if it works for you then keep doing it. I am just going to suggest that others should be wary of such actions. Apart from any other considerations, men often experience both PMR and the treatment very differently to women for some reason. They are often able to continue doing things that are impossible for women to manage, exercise being one particular aspect, and have totally different side effects from pred. I do not recommend this sort of approach for most people.

For most people with PMR cold packs would make things worse - for most patients warmth is more beneficial because the most likely cause of problems is that the blood isn't able to get to the muscles through the microcirculation (the very tiny blood vessels) and so they are starved of oxygen during any exercise and ache. Cold will constrict those blood vessels even more and make the problem worse not better. Many patients in more temperate climates find they improve on visits to Spain because of drier and warmer conditions. Many patients  are intolerant of extreme heat - as has been evidenced by the "postbag" from the UK recently! 30C is extreme unless you live in a country with such temps over long periods (I do too by the way) - I now quite like 30C but when my PMR was worse I retreated to the flat with all blinds down and a fan on. I still do at 34C.

As for the "brisk walk or jog" - many patients are delighted to be able to take a short and gentle walk at all, brisk is relative. They should be encouraged to do so - and not have it even vaguely suggested to them that they are in any way inadequate for feeling decidedly ill at the prospect.

As for your other suggestions - whatever rings your bell! But I would suspect/suggest that you don't have "just" PMR. What you are describing would probably work for some people with myofascial pain syndrome which often occurs alongside PMR but is different in many ways. Fibromyalgia is also a possibility and it isn't uncommon for patients to have both. Fibro is a pain perception problem and is often similar in presentation to PMR leading to patients being misdiagnosed. PMR responds almost totally to pred, fibro isn't changed at all by pred - it requires different medications and probably some manual techniques would help a mild case.

All the best for the future Charles.

Thanks Eileen.

Mine are coping solutions only, I realize. No great guidance on what to do otherwise in practical terms. Lying about in pain isn't my style. I cope, for example, with my GCA diminished eyesight- on one side by popping out the tinted sunglass lens on that side- that balances my vision in terms of brightness. No doubt I'll be told I'm  now exposed to UV radiation. Better than tripping and  falling over.

What stikes me about this very wondrful forum is the total lack of input from professionals, unless I'm missing something. Is there no nexus?

Months ago I wrote to Dr. John Kirwan at the Univesity of Bristol for example- with a few basic questions- no reply at all,  although the message was received. I've had some better luck with some quite senior USA and Canada based medical professionals at least in terms of replies. That may be because I know them  personally.

Is there no interest in these "rare" ailments at the professional level? No research funding? I'd be more than pleased to pop in a few thousand euros as seed money to a  certified research organisation in order to kick start a "crowd" or "cloud" financing mechanism. There seem to be enough sufferers now identified to attract funding,albeit in small amounts per contributor,  and hence garner the interest of some medical faciliities, research students,etc. to get onto this seriously after decades of applying the same holding pattern treatments.

 

 I note the suggestion that PMR and GCA have a genetic relationship to northern Europeans mainly. And they may run in families. Is there a "gene splice" technology  being looked at, as at Oxford now regarding some eye and nerve problems?  Adult stem cells- lots of work going on in the biopharm industries, including applications to nerve problems - but in the academic institutions? Big disconnect.  If GCA and PMR are auto immune diseases , is there anything coming out of all the reseach regarding AIDs that might also apply to those?( Interesting article in the current Economist).

Don't mean to bang on, but some of the above are points for us to reflect upon as we share thoughts and experiences.

Regards, Charles   

I do have a hand held massager called a Thumper & have found it helpful to massage & loosen stiff muscles in the shoulders, neck & back & circulate the blood a little.

There is interest in PMR and GCA and it is partly due to the activities of 5 ladies who "met" on this forum several years ago and got together to set up a charity. If you go to this post and click on the first link in it it will take you to the northeast of England support group website:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

This group has close contacts with groups doing research and is actually actively putting funds into research, albeit it on a relatively small scall at the moment. The people who run this group would probably be very interested in talking to you about fund raising in various ways. I just sit here in northern Italy trying to provide medically and scientifically backed info on this and 2 other forums. This forum was set up by a couple of doctors from the northeast to provide that sort of information to both patients and medics but it provides a vast resource for other illnesses too. It is all well moderated (hence I have given you a pre-approved link not a direct link which will disappear) as are the other sites mentioned - but they are specifically PMR and GCA.

You have to remember that PMR/GCA have previously not been perceived as of great economic interest. This will change as our age group is expected to work for longer - but since the rate of both increases with age there will be increasing numbers in the active work force unable to work because of them. Half of all 80 year olds have PMR - so in their late 70s there will also be relatively large numbers. We believe that there are a lot of much younger patients - the threshold is already down to 50 and increasing numbers of patients in their 40s are googling their symptoms and querying PMR as an answer.

In the same way chronic fatigue syndrome and ME have finally been shown to have a physiological not psychological basis, this will change for us too. A recent piece of basic research in England has suggested a role for neutrophils (a white blood cell) in GCA and other vasculitides - I think it is likely that will be extended to PMR. That is a first step to finding a handle for a better medication that can attack the cause rather than merely managing the symptoms. If it is shown this applies in a range of disorders caused by vasculitis then drug comapnies may prick up their ears at last - if it is affecting large numbers of older people in an increasingly aging society as well as younger people with similar illnesses there is a place for them to earn money. That is what it all comes down to - money and profits.

It is relatively recently that some of the techniques that are providing evidence have become widely available - and of course there is a queue to use them! The doctors faced with these patients are generally very overworked - so much of the preaching is being done by lay "expert patients". GPs, overwhelmed as they are, have no time to read information sent to them - so claim, rather arrogantly, that they know all about PMR and don't need to read anything new. I, too, wrote to Bristol and received no answer to my query. I made my point to him in a video conference recently - and I constantly look for points to present as snippets to the several wonderful rheumys in research I now have contact with. Patients have had a great influence on the things to be born in mind in patient-centred research. We are getting there. Leeds in particular is a rising star. Of course - if they all worked together it would help and that does seem to be starting to happen, within the auspices of OMERACT if nowhere else. Google it.

Get in contact with the northeast lot - they can tell you far more about what we can participate in and how we do it than I can. That's all beyond me - I can read the medical stuff and have probably read more text books and papers about PMR than the average GP (not that that is difficult). I see my role as disseminating info and knowing where to look - and I spend a lot of time doing that. It keeps me out of mischief ;-)

But it was due to persons like you we have anything much going on at all - there is a framework that you may be able to fit into.

 

Hi Eileen. Thank you so much for your supportive email. It's 2am now and the pain is so intense, I am unable to sleep. So found the energy somehow to see if any response to my inaugural email of yesterday. And there, among several, was your encouraging post. Just reading it has made me feel better; knowing I am not alone in the relentless grip of this awful condition.

I am not under a specialist yet. My GP organised all these tests, and when she had that light-bulb moment on June 24 (my birthday) , suggesting PMR, I felt I'd received the best present! I wasn't imagining this pain, there was a reason for it. She started me on a daily 40mg of predisinone, reducing the dose by 10mg a week. It was MAGIC and I spent the past four weeks blissfully pain-free. But for the past week I've been struggling on her new regimen of 10mg on alternate days - and its back with a vengeance. Will see her this morning to change the dose.

By the way, I am a white Zimbabwean of British stock. I don't know if Africans are susceptible to PMR - in fact I don't know another soul here who has it. But oddly my two maternal aunts have had it - and the remaining one at 84 still does. Unfortunately she lives in New Zealand and I can't blub on her shoulder!

I will certainly try the links you have given me. And thank you for being there. Just writing this has taken my mind off the pain - and the second half of my sleeping pill should kick in soon.

Heather

Heather, I'm so sorry to hear you are in so much pain.  Our stories are so similar in many respects that it's scary.  I was diagnosed with PMR in March of this year, two days before my birthday.  I too was put on 40 mg of prednisone and was feeling like a million dollars when my 65th birthday rolled around two days later.  I tapered down at a rate of 5 mg every two weeks on the advice provided to my Nurse Practitioner by a specialist in Internal Medicine.  Unfortunately, this resulted in a relapse when I reached 25 mg.  This was all before I learned so much from Eileen and others.  Prednisone tapering must be slow and easy.  I did it far to quickly.  As a result I ended up back at 40 mg for a month and did not have the miraclulous results of the first 40 mg.  However, my symptoms stabilized and I am curently tapering at a much slower rate.  As Eileen will tell you no more than a 10% drop at a time is the minimum.  Although I have numerous issues that could be PMR related or prednisone related I'm doing well and feel like I'm on the right track sorting it out.  You will get there too.  Listen to Eileen, Mrs K and others.  You and I were also placed on an unusually high dose of prednisone for PMR.  It's normally managed at 15 or 20 mg so we both face a greater challenge in reducing the dose. 

I live in a very small town in the southerb Arctic of Northwest Territories of Canada.  There are no specialists here and our hospital and clinic rely on locum physicians.  We do have a couple of local Nurse Practitioners and I was lucky enogh to pick a great one who is very supportive in accepting the information on managing PMR I am gathering from this group and the UK Northeast Support Group.

Wishing you better days and a good night's sleep soon..

 

Thank you so much Jean for your encouragement. Couldn't sleep and was up at crackers to eat something so could take my 10mg for the next two days. But realise can't go on like this, so will see my GP today and ask her at least to allow me 10mg daily. Otherwise quite frankly, life is not worth living. By the way I've just turned 67, so think you and I are "young" to have succumbed to this wretched malaise.

Thanks again for writing. Heather

That answers it all really - if you read the Quick and Kirwan paper you will see that 40mg is a very high dose to start you with and her recommended reduction is the sort you would use for pred in any other inflammatory problem. PMR is not like that, it is a chronic problem, due to an underlying disorder that is not dealt with by the pred. The pred is there to control the symptoms to allow you a decent life. Quick and Kirwan take 3 months to get from 15mg/day to 10mg/day - to try to get you to 5mg in 5 weeks is hopeless and was almost bound to result in a return of symptoms. You won't need (and shouldn't) return to the 40mg but 15mg until your symptoms are definitely controlled will be a good idea. Has she checked ESR/CRP? Were they raised? Did they fall with pred? If so, she should check them every few months to be sure the inflammation isn't starting to increase again - you may be comfortable at a given dose but it may not be enough to stop all inflamamtion and it will creep up again to a point where the bucket is full and it all spills over. 

Are your tablets ordinary white pred? If so you can cut them to get 2.5mg which will make reductions a bit easier. In the UK you get 1mg tablets - I know other countries don't provide such luxury and it doesn't matter for the way most pred is used. One of the causes of a return of pain can also be reducing the pred in too large steps - the body becomes used to a dose and reacts with symptoms similar to the original problem if you drop too fast. I have also developed a reduction scheme that can also be used successfully with larger dose drops and will tell you what it is once you are settled and ready to reduce next time. If you can get 1mg tablets it would be much easier - and I would think it is possible even if they have to be ordered because they aren't kept in normal stock at the pharmacy. Children would need much smaller doses so it must be possible somehow.

I would have been surprised if you had been African - we don't know of any Africans with PMR. There is a familial tendency to develop PMR - most of us could identify a parent or grandparent who had it but it wasn't called PMR, it was just "my rheumaticks"! And half of all 80 year olds have PMR. 

I didn't notice this when I wrote my previous post. No - 67 is probably fairly normal despite what many doctors would have you believe. The average age is claimed to be 73 - but to be "average" when half of all 80 year olds have it means there must be a fair number under 73. However, it is very likely there are a lot of under 60s who have it but are undiagnosed - because doctors tend not to consider it if you are younger - and so not included in the figures. The most recent revised guidelines say "over 50" and I know quite a few in their mid-50s, I was still 51 when it first started and had it for 5 years with no treatment before it went absolutely mad and I could barely get out of bed. It still took 6 months to get a diagnosis!

Hi Eileen...thanks for all this additional info. I saw my GP this morning and she seemed quite surprised that I am battling on the reduced alternate-day dose. Anyway, she has upped it to 10mg a day and I will see how I cope. I did notice that all the posts mentioned the slow month-by-month reduction of dosage, and assumed mine was a bit of a fast-track (which happens in Africa!) treatment. But think it has backfired. My doctor was very sympathetic and told me to come back any time the pain is too much to handle. Did have my bloods taken for ESR/CRP. The doctor said the ESR was signigicantly high, but negative for rheumatism. I haven't had a blood test since that one on June 24, but she told me to go for one in the next few weeks. .

The Prednisone tablets are small and white, but with no cutting ridge. I don't know if the pharmacies here have them in other doses; the doctor seems to think not. I think we get everyone else's past-sell-by-date pills and potions! I am possibly coming to England in about three weeks and may try to get a script from the GP practice I attend when there. I actually saw the doctor there in early June, and she (like the ER doctor that my daughters rushed me to because of this pain) put it down to a possible compressed nerve in my back. They both advised me to have an MRI scan, which I did once I was home here.

Thanks to all of you who have responded to me.  Feel on the road to recovery - and with some very helpful companions!

 

It sounds as if your GP knows half the story - which is very common. They know enough to recognise possible PMR and that pred is the "answer" but not enough to know it is different from other illnesses treated with pred. It is normal for PMR to be rheumatoid seronegative - that is almost one of the distinguishing marks between PMR and late onset rheumatoid arthritis which can be very similar and LORA will also respond to some extent to pred. LORA can be seronegative but if you are seropositive you haven't got PMR.

Ask your pharmacist what is available - most doctors haven't a clue about anything they haven't used themselves! If you can't get 1's or 2's the pharmacy may have a pill cutter, if not you will get one in the UK (get a spare). It is possible that they can also compound medications into different doses - they can here in Italy, just like old-fashioned chemists. My husband needs 2mg warfarin for ease of dosing to keep his blood level right, 2.5mg is too much. Here you only get 5 - so he gets a prescription for a load of big tabs and the chemist grinds them down and fills them into capsules with 2mg.  When it comes to drugs you will get far more sense out of the pharmacist - I swear most doctors slept through their pharmacology lectures!

One thing that absolutely doesn't work with PMR is fast-track - the only thing that needs to be changed to fast-track is diagnosis, especially of its close relative GCA. Everyone wants to get off pred and tend to push reductions even when they get the warning signs of a flare. You only end up having to go back to a higher dose and starting over again - it isn't worth it. Try to get your GP to leave you at 10mg for at least some months if it all settles down again - Bristol keep you there for a year. Making sure your ESR/CRP are as low as possible before trying to reduce is a good start, it doesn't guarantee success but helps. And little steps...