polymyalgia | Arthritis Information

Is there any benefit to using a Jade Stone heating mat on the shoulders to relief pain of polymyalgia? Or is there any harm in using it? Lots of people find warmth (a shower, electric blanket in bed before getting up) helps the stiffness and allows them to get moving which in itself helps to relieve the discomfort of PMR. Don't know what a Jade Stone heating mat is - but if you have one, try it, there shouldn't be any reason not to. If you haven't got one and it's expensive - try other forms of warming that you HAVE got before spending loads on something that might not help YOU. We're all so different in how our PMR works. I found the steam room and sauna at the gym great - before or after gentle exercise to get moving. A good old-fashioned hot water bottle or sitting against the radiator were good too. On the other hand - the hot flushes didn't necessarily mix too well with warmth!!!! Hi Peggy,

I don't know why people say massage is bad for you - I was not diagnosed for over 4 years and used several things to keep going. There is a thread over on the UK patient experience forum about ways people use to reduce the impact of the disease and it was started because some people did not want to use steroids. The conclusion was that, as yet, nothing other than steroids will deal with the underlying inflammation to make you anything like normal. Is there a medical reason why your doctor won't use steroids?

To be more specific: you can't blanket say repetitive exercise is "bad" for you, what happens is that when you use a muscle again and again it needs a good oxygen supply. In PMR the arteries are inflamed and can't widen in the same way to allow more blood to get to the muscle to "feed" it. That is what causes the muscle to start hurting. Something similar happens to patients with something called peripheral arterial occlusive disease (PAOD) - the arteries are partially blocked so the blood doesn't get to the calf muscles when they walk so they have to keep stopping to let the pain go away. The most common cause is diabetes. What I find is that by increasing the amount of that sort of exercise that I do very gradually I can build up the amount I can do before the cramp starts.

As for massage - gentle massage may help the stiffness, so why not. I used something called Bowen technique which is a sort of chiropractic for soft tissue and there are practitioners in the States. It's based on the idea that muscles under tension maybe aren't in the position they should be and aims to reposition them and their attachments to the bones. I found it kept me going quite well while the PMR was not very severe and even helped when it had a really bad flare last year which is when I finally got a diagnosis. I also found Pilates and Iyengha yoga helped - but I had fabulous and understanding teachers. On steroids I do well without which is just as well as where I live now neither is an option!

Some people have said they find taking higher vit D doses helps with pain in other rheumatic diseases (at least 2000 IU per day, some even higher, the new recommendations say you can take up to 10,000 IU a day safely). Many of the "antiinflammatory" foods such as oily fish have lots of vit D.

I know how you feel about the all-day pain - that was me for 4 years and it was so depressing, I used to sit and cry with frustration on a really bad day. That's all behind me on steroids so I am happy to accept the down-sides of steroids in order to be able to live a normal life - not that I have any real problems. I still have the occasional bad day - we're having a heatwave in the upper 90s which is unheard of here in the mountains and that is making me struggle a bit. I know you'll be used to it but we don't aircon here in Italy! I have to admit, in your position I might be asking for another opinion about the steroids unless there is already a really good reason for not using them.

Good luck,

MrsE

MrsE,
There is no medical reason for me not having steroids that I know of. I think my doctor feels this will go away in 6 months and I should try to live with it. She, and I, are concerned with the getting off steroids phase of the treatment. But it is getting depressing to be so obsessed with the daily pain. I will make another appointment and ask to see a specialist.
You gave me a lot of valuable information. Especially the part about lack of oxygen in the muscle tissue. I suspected that lack of oxygen played some part. When I wake from a nap in a recliner my arms often feel worse. You have obviously done a lot of research on PMR. I have just started.
Thank you,
Peggy

Peggy: if that is so then your doctor needs educating about PMR if she is sure of her diagnosis. A commonly held belief is that PMR "burns itself out" after about 2 years. That is definitely NOT necessarily the case as there are numerous members of the British Patient Experience forum who have had it for considerably longer than that and a few who have had it once, it went into remission and then it returned. Even a single episode varies in how bad it is from week to week - or even day to day. I find it difficult to understand why anyone should assume PMR will just go away: PMR is what is called an autoimmune disease, so are some thyroid problems and other rheumatic diseases. It just means it is your body's own immune system (the bit that helps you fight off infections) that is doing the damage by attacking your body and causing inflammation. All of them can go into remission - they don't always do so!

Another lady who posts here, Mrs UK, has given links to the PMR support site in Britain. On that site you will find the official medically approved recommendations for the diagnosis and treatment of PMR. This gives the symptoms that appear and how to decide if it really is PMR and steroids doses etc - designed for the doctors to use. Print it off and take it to your doctor - if she is one of the sort who doesn't accept the patient's own research and gets sarky then go find another one who will listen to you.

You will also find patient stories and info there about coping with PMR. MrsUK has also mentioned a Swedish guy called Ragnar who devised a tapering scheme as many people do find it difficult to get off steroids completely once they get down to very low doses. Although some people do have problems weaning themselves off steroids because your body DOES become dependent on them it is not because you are addicted - it is because your body normally produces something called cortisol and there is a very complex feedback system involving several organs so you don't produce too much. If you are taking corticosteroids your body sees there is enough in your blood and so doesn't produce its own, over time the adrenal glands get "lazy" and may not realise you haven't got enough - either because you have reduced the amount you take or because you there is something going on that means you need more, like an infection, more stress from travelling or an operation and so on. That is also part of the reason that PMR varies, you don't do exactly the same amount every day but your body isn't able to up its own production of cortisol in response to the inflammation in your body. There are some people who suspect there may be something wrong with the production of the hormones that contributes to the PMR but no-one really knows what causes it yet. However - the main reason for not being able to get off steroids altogether is much more like to be the fact that the disease process is still going on. STEROIDS DO NOT CURE PMR - there is no cure as yet. The steroids are used to reduce the inflammation to a level where you can function as near normal as possible. There are many patients who are never totally pain-free but instead of sitting at home half-crippled (or worse) they can lead a reasonably normal life with much less pain. If you develop giant cell arteritis, also called temporal arteritis (the arteries in your temples are inflamed) which causes headaches and visual problems you have to have much higher doses of steroids or you risk going blind. And some patients who start with PMR go on to develop that. I'm not trying to scare you - but it is something you must be aware of and go straight to a doctor if you have severe headaches and some other symptoms. It's not known if untreated PMR puts you at a higher risk of it but it is possible.

One of the things often seen with PMR is depressive mood - part of it is the PMR but if you are in constant pain for a long time that makes it even worse. I wonder if maybe doctors are a bit blasee about PMR - unlike rheumatoid arthritis it doesn't destroy the joints and the patients often look well enough. That's certainy a problem with family and friends not understanding how ill you feel and how unable you are to do even simple things. I've just been doing some cleaning - and I'm absolutely pooped! And I'm normally well controlled on steroids. I certainly came across a lack of sympathy even from healthcare professionals who didn't know much about PMR - on the lines of "you're not as badly off as..." I can't stand or walk any distance without pain in my feet - and if your feet hurt, all of you hurts!

Your comment about feeling worse after a nap is a typical part of PMR in that a feature of it is that you are stiff in the mornings (for about an hour is the criterion) and the stiffness returns after a period of inactivity. I found it very bad after being in the car, I could hardly get out and took several minutes to be able to walk. I was better if I was driving - I was always moving a bit as I drive a stick shift and the driver's seat is in a different position too. I couldn't hold a telephone to my ear without my upper arms cramping and that comes back at an early stage if I have a flare.

Get the information from the British PMR-GCA Northeast support site and go to your doctor - if it is PMR an internist GP can deal with it too, it doesn't have to be a rheumy but they do know a lot more about it. But don't be scared of steroids - sure, they have side-effects and they can be nasty. Not everyone gets them, I have very few, and they go away again once you get to a lower dose. The most inconvenient is probably the osteoporosis they may cause, but that is at higher doses and there are medications to prevent it - they have side-effects too. But so does Tylenol! There doesn't seem to me to be much choice between living in constant pain and very restricted in what you can do and taking steroids with the possible risk that you might possibly in 15 years time have a broken hip - but that's not certain.

Go back and discuss it again!

Good luck,

MrsE

Peggy, I have to agree with the others that I'd be finding another doctor that will treat your symptoms properly. I don't like taking prednisone either but I dislike being in constant pain from PMR even more.

I too had a doctor that made the comment "Your not as bad as some" literally. I guess he expected me to be in a wheelchair before he would take me seriously. I am now seeing a rheumatologist for my PMR and am taking prednisone along with methotrexate. I'm in the process of weaning off the pred and my upper & lower back are aching again and getting worse. My rheumy told me to call if things weren't going well and I guess I will have to.

Before the prednisone I was on a rather high dose of extended release narcotics plus another narcotic for break through pain, neurontin for nerve pain plus tylenol as needed. None of these was touching the PMR pain. As soon as I started prednisone I saw a big difference though. By the way, my bloodwork always shows normal, so I'm obviously one of the 20% oddballs.

Good Luck to you and keep us posted!!

Hi Peggy,

I agree with what's been written above. Some GPs don't have the experience in dealing with PMR. If you can get to see a Rheumatologist (affectionately referred to as a Rheumy) I think your symptoms would be much better served. Some GPs are excellent, but some just don't have the experience (or training maybe) in dealing with PMR.

I was in to see my Rheumy yesterday and he's going to lower my dosage down to 10mg of Pred -- if my blood tests come back within the expected range. I started on 20mg in March, currently on 12.5mg.

Good luck Peggy. Please keep us up to date on your progress. Russellcat: if your pain is coming back it is almost certainly either you are weaning too quickly and need to make the drop much more gradually (more in a moment) or the disease is still active in which case you need to stay where you are for a while longer before trying to go down again. I find a difference in the two types of pain, the just getting off the steroids pain is aching that starts soon after the lower dose is taken but improves over the next week or so. The pain because the new dose is just too low starts after about a week to 10 days and then steadily gets worse until I give in and go back up to the old dose. Some people find they can get to the next lower dose but have a horrible week with a lot of pain and stiffness which then resolves. If you are like this, plan a very quiet week with as little as possible that must be done and go for it.

When going down from one dose to the next the difference should be quite small for real success. For example, if you are on 15mg you might just try down to 14mg to start with and not make the bigger jump to 12.5mg. And to help a bit more, alternate the two doses for a week or so: take 15/14/15/14/15/14, then try 15/14/14/15/14/14/15 before dropping to all 14mg doses. Mrs UK has recommended some reading that describes other people's very slow reductions which have been successful for once you get down to even lower daily doses where the percentage you are dropping is much higher. The rota for taking the doses can get a bit complicated and some people use an Excel sheet to write them all out and then follow it carefully, marking the days off!

And in the case of PMR, I can only say: narcotic pain meds that still don't deal with the pain versus steroids - steroids win hands down! I don't have a problem with taking narcotics for pain where they work - but they almost never do in PMR for some reason. NSAIDs can help a bit as they also have an effect on the inflammation but even that is minimal and longterm use is bad on your gut.

BTW - does the methotrexate help you to achieve a lower steroid dose? From my reading in the literature there seem to be mixed opinions about how effective it is and it's not a nice drug either!

all the best, MrsE

Thanks MrsE. I didn't call the rheumy yesterday but am going to today because my neck, shoulders & lower back are much sorer and feel swollen again today. I don't think the rheumy will adjust my pred but is planning on increasing the mtx. She still isn't positive it's PMR but I disagree and definately think it is. At 53 she thinks I am too young still and the fact that only one arm was giving me problems makes her think this. In my opinion my age is about right on and the fact that it was only one arm makes me think that I got started on the pred before the other arm came into play. Both thighs were involved. I could hardly crouch down anymore to pick something off the ground or get clothes from the dryer. They are all perfectly fine now after starting the pred.

This all gets so aggravating. You can't write you own scripts and are at the mercy of the doctors. I still see my pain management doctor for the osteoarthritis in my spine which has been substantiated with MRI's. I've also had fusion surgery in my lumbar & cervical spine and now have osteoarthritis in the facet joints in these areas. I know they would just love to get in there and do more injections but I keep holding them off to see if the PMR is causing alot of my issues as well. I do know that on the 15mg pred my back felt so much better. But then again, the steroids are probably relieving alot of the inflammation caused by the osteoarthritis.

After one of my injections for a bulging disc at L-2/3 I developed shingles which can be brought on by steroid injections. Now I'm scared because the shingles were horrible and lasted over a month. They want to give me anti-viral meds before, during and after the injection to alleviate the shingles but I'm not going there unless it is crucial that I do.

I'll let you know about the mtx helping to lower the pred if this is what the rheumy actually does. I will volunteer myself to be the guinea pig on this one. Wish me luck!!

Russellcat:

Download the stuff from Mrs UK's site and take it to your doctor. A rapid response of the symptoms to 15-20 mg of steroids is pretty much diagnostic of PMR. Yes it helps the other probs but over a much longer time span. And I had it at 52 and probably much earlier. I'm sick of docs who've never had it saying the "too young" bit - grrrr! Sorry - rant over!

Mrs E

Hello everyone,

I just found this site and am so glad to find others in the same situation as me with PMR.

I was diagnosed with PMR in Feb 2010 with neck, shoulder, hip, bilateral aching along with severe headaches. I had the GCA biopsies after some high doses of 60 mg of Prednisone. The results were negative.....but quite possibly the results were skewed by the high doses of Prednisone prior to the surgery. I have been on a Prednisone taper since then.

The 2 months of headaches went away thankfully. Although I am starting to get a few the last week or two. I am going in for a sleep study to see if my sleep patterns may be a contributing factor in these headaches as they develop in the middle of the night.....and maybe the PMR? You think maybe ????

My PMR taper is down to 11 mg per day.....for 48 days now. My CRP has come down to near normal, but the SED rate is quite high at 95. Unfortunately, the prednisone is not getting rid of all of the symptoms at 11 mg. SO, I am supplementing with Vicodin, Flexeril, Ativan, and Ibuprofen.....and Lidoderm patches, and Tens unit, and hot packs and ice packs.

Is anyone else dealing with suplementing with all of the above?

This is getting so overwhelming.

I also have another problem......curious to see if anyone has been allergic to dissolving stitches in the biopsies? I had the biopsies in April, and I still itch daily in those areas.

During a 2 week period that I was recently on an antibiotic for a UTI, I actually had about 6-7 days of no itching.!!!! I wonder if there is an infection in the stitches?

Sure wish I had a doctor in the family.

Any responses will be appreciated,

Take care,

Marcia

Hi Marcia, glad to meet you, not that your here though.

I've had alot of dissolving stiches and never had any issues with them. The itching is normal when you are healing though. Is there any redness, warmth or swelling? That really doesn't sound normal.

Have you ever been checked to see if you may have something else going on besides PMR. Possibly osteoarthritis or fibro which I have both of. I was dx'd about 6 months ago and am also on 11mg. It's not perfect but I can deal with it. Are you seeing a rheumatologist? You may want to consider seeing a pain management doctor if your pain is not being controlled with the steroids. Are the pain meds and muscle relaxers helping your PMR symptoms because they didn't help mine and I was on stronger ones than you are taking when my PMR started before I was on steroids. Never did find much use for lidoderm patches for anything but shingles one time. Never helped with osteo or fibro.

Sorry I can't help much. I'm new at this and asking questions too!

_popupControl(); Mrs. E.......PMR was diagnosed 3 years and I have been up and down on prednisone since. In July I had severe stomach cramps and colon bleeding. Was in hospital for 5 days and it was brought under control with antibiotics. All the drs. felt the culprit was prednisone. I am coming down on the prenisone 1 mg. every 3 months (now on 4mg). Relapse started over a week ago and will see dr. tomorrow ???? Don't know what he will do. My question: has anyone experienced the bleeding? I feel like I am between a rock and hard place.
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