Newly diagnosed PMR patient
Posted , 9 users are following.
After several weeks of unexplained crippling pain, x-rays, MRI scan and courses of anti-inflamatory and painkiller medication that had no effect, I was diagnosed with Polymyalgia last month (June 2014). I live in Zimbabwe, and not knowing anyone who has this condition here, feel very isolated in my ignorance of the condition. I hope fellow sufferers will provide me with advice and information.
1 like, 24 replies
tavidu heather39822
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ann98860 heather39822
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charles01893 heather39822
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I was suffering,rather suddenly from PMR symptoms several months after having a GCA diagnosis. A boost in Prednisone has taken care of most of the pain, although I am now hit with what someone called "Hissy shakes" tinnitis included , every morning for an hour or so- a brisk walk or a jog ( where I live in SE Spain) that's usually when it's about 30c) takes care of that. My wrists now are the only delicate part- but I can deal with that as below.
I also learned that a few light and quick taps-sort of judo chops -to the painful nerve centres somehow stops the nerves from playing games. Far better than pain killers when there is no muscular or other damage underlying the pain. A friend loaned me a soft rubber hammer he got to have the same effect on muscle spasms. Works very well and quickly.Cold packs also helped me berore I got onto this trick. Until then I had trouble getting out of bed, sleeping or walking. After I "treated" my affected leg and arm- the PMR related pain went away and hasn't returned after more that three weeks. I am not a practising masochist by the way- just a 73 year old geezer rying to live as pain free as possible and as long as that works out.
EileenH charles01893
Posted
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.
charles01893 EileenH
Posted
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
mary68968 EileenH
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EileenH charles01893
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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.
EileenH heather39822
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Use this link to get to another post on this site:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
where you will find links to the northeast of England support group website where you will find loads of information about PMR and GCA, the related condition. There is also another forum at forumup where you will meet loads of other PMR patients from all over the world - we're less formal than here and chat about anything and everything as well as PMR. We haven't quite got to the stage of sitting in front of our computers with a cup of tea (or more likely a glass of wine) because we don't have a chat function on the forum but we do work like a big coffee morning. There is also often someone around in the middle of the night to offer a sympathetic shoulder - either because of the time differences or because there are a lot of night owls!
The final link on it is to a paper written by rheumatologists aimed at GPs to help them diagnose and manage PMR and GCA - most of it is quite easy to read really and your doctors in Zimbabwe may find it helpful though I imagine you are under a hospital specialist judging by the tests you've had done.
I'm very intrigued - are you European? They keep telling us it is Scandinavian genes that predispose us to PMR and you are the first person in Africa I have come across with PMR! Now you have got here - do keep in touch and I or some of the others will do our best to answer your questions.
heather39822 EileenH
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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
jean39702 heather39822
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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..
heather39822 jean39702
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Thanks again for writing. Heather
EileenH heather39822
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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.
EileenH heather39822
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heather39822 EileenH
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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!
EileenH heather39822
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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...