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.
Hi Heather. like you I was in extreme pain prior to being diagnosed with PMR in May. Do not feel isolated or worried, hopefully you doctor will prescribe Prednisolone tablets (steroids) and if like me you will feel the benefits within a few days. Good luck and let us all know how things go.
Hi to you Heather sorry to hear you have been told you have got P M R .there is no cure for this nasty disease it can be treated but only with predisolone tablets its along journey your on; you need to find out what your inflamation level by having a blood test so you can be given the right dosage to start off with wecome to this forum it can give you a lot of help good luck getting sorted out.
Hi:
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.
Hi Heather and welcome to the club!
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.
Hello Heather. I am not able to help you as I am myself newly diagnosed but I just wanted to say that I have received a fantastic amount of help, advise and support on this sight in just a few days. It has been truly amazing. I am sure you will find it the same. Just read as many posts as you can they are all so helpful. Good luck.
Youve come to the right place Heather. I was diagnosed with PMR in March of this year and would have been lost without these folks.
I hope you are able to gather what you need from Eileen and others and get the necessary medical support in Zimbabwe.
Dear Heather: So glad you found this forum it makes you feel less
alone, however, try to listen to your body. The key to stabilizing whilst
on the drug recommended by your doctor is to rest, stay away from any
kind of stress and be gentle with yourself. Accept you may be incapacitated
in some ways for a while and be positive. Good luck dear girl and be patient.
Hi Heather,
I think knowledge is power & for me at least it was a relief to finally be diagnosed. That is a big part of the battle. As time goes on you come to some terms with PMR & find ways to adjust. This forum is just an amazing place. The knowledge of some posters & the empathy are very reassuring. It gets better.
Hi Heather....sorry to hear of your diagnosis. My rheumatologist just told me that he has quite a few PMR patients. Often getting the diagnosis is difficult. This is a great forum for information and support. The prednisone works! Good luck!
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
Just add to my earlier comment, I have also had some success with acupressure- similar to acupuncture in concept, but without the needles- a home remedy with no need for any devices. Quite helpful as regards my wrists and neck areas. It's early to state that any fix is going to be long term, but apart from the partial losss of eyesight stemming from GCA, I can now lead my day to day life more or less as before- taking into account some of the side efects of the medicines. While I can keep fairly fit for example, the loss of eyesight and impaired balance does compromise some favorite activities. All in, I'm relatively fortunate- so far.
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!
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.
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!
Thanks for those tips, Charles. Not sure if anyone does acupressure in Zimbabwe, but certainly worth making inquiries. How distressing for you that your eyesight has been affected. Getting my mind round PMR, haven't thought of GCA - hopefully it hasn't reached Africa? You have a lovely powitive attitude and I hope its infectious...Could do with a good dose of that.
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...