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Polymyalgia Rheumatica

(68 Posts)
Annobel Wed 11-Apr-12 10:35:47

I have started this thread because a number of other grans have mentioned having PMR and I know everyone has slightly different experience of the condition. Mine was diagnosed last June, but with hindsight I know I had it for at least two months before that. My dosage of prednisolone has reduced to 5mg, though I bumped it up to 15 over Christmas and then brought it back down again. I still get a lot of stiffness and at the moment have difficulty walking even round a supermarket because of pain and weakness in the muscles just above my bottom. I might have to bump up the dosage during my French holiday next week, but at least I will have my personal doctor (sister) with me. Could we share experiences? I would find it very helpful.

grannyactivist Wed 11-Apr-12 12:40:03

I can't take steroids any more because of another health problem, but they were like a magic bullet for the short time I was on them. I try to manage the pain as best I can and some days are better than others, but I'm currently enjoying a period of remission, which is wonderful. I still get some occasional discomfort, but compared to the crippling (literally) pain I have experienced in the past I'm counting my blessings. smile

Annobel Wed 11-Apr-12 17:37:55

I still have to be very careful not to overdo things, GA. Driving is sometimes a trial and today I have been very grateful to my GD for doing my vacuuming. I have had to employ a gardener though. Can't quite see her doing that! I do hope your remission lasts.

glammanana Wed 11-Apr-12 18:24:29

I am taking 5mg of prednisolone at the moment I have been trying to manage without it but find it nigh on impossible as the pain is so bad in the morning again in a similar area as yours annobel I had the blood test done in September of last year and the count came back quite high,i find more difficulty early morning but by 10/11ish the sluggishness seems to be under control,when it is bad it really makes me feel all of my 60+ yrs and very very miserable indeed.Best of luck on your trip next week enjoy envy

johanna Wed 11-Apr-12 18:32:01

annobel and granny
Are you both on statins ?

What causes PR is unknown apparently, so maybe a little research into the effects of statins might be a good thing?

Annobel Wed 11-Apr-12 18:48:53

glamma, don't be a martyr. If your dosage isn't working, put it up 1mg or 0.5mg at a time.

here is a web site where you can share experiences with other sufferers:

I have found it very helpful. Don't know what statins have to do with it but I will ask. My dad had PMR and that was in the days before statins.

jeni Wed 11-Apr-12 18:52:04

And my MIL I don't know if it is becoming more common or just better diagnosed! I though the thinking was that it is autoimmune in origin?

Annobel Wed 11-Apr-12 18:53:10

glamma, don't be a martyr. If your dosage isn't working, put it up 1mg or 0.5mg at a time.

here is a web site where you can share experiences with other sufferers:

I have found it very helpful. Don't know what statins have to do with it but I will ask. My dad had PMR and that was in the days before statins.

Annobel Wed 11-Apr-12 19:04:00

Yes, jeni that's the thinking and it's what my dad was told all of 24 years ago.
Don't know how my last post got duplicated with your post in between! That's a first... confused The second one gives the correct web address.

NannaAnna Wed 11-Apr-12 21:35:50

I posted at some length on my experiences with PMR a while ago (Sorry, can't remember who it was in response to.)
Firstly, it is most certainly an auto-immune triggered condition.
Secondly, my experience might trigger extreme responses, depending on your mind-set, but all I know is, it worked for me, and yes, it is all in the mind (if you use that as a sceptical response) because of course it's all in the mind - in my opinion.
Once I actually made it to my GP, after about 4 months of increasingly excrutiating pain and immobility, it turned out that an emergency consultation with a rheumatologist was about another 4 months away!!
In the meantime, my yoga teacher, who had suffered a number of debilitating conditions in her journey back to good health in her (then) late 60s, recommended her kinesiologist. I didn't have the foggiest idea what a kinesiologist was, but her testimonies of health issues resolved after being written-off by conventional practitioners, convinced me.
She also recommended her nutritionalist, who in turn recommended a reflexologist. I saw all of them.
All three detected the same underlying issues. I am always very taciturn in such situations, because I am naturally suspicious of them building up to a diagnosis based on one's responses to open leading questions! Believe me, I give nothing away! I was therefore impressed and convinced.
Anyway, long story short (it's in that earlier post), by the time I saw the rheumatologist I knew I was feeling better than I had been, despite being told by the rheumatologist that was "impossible".
When the test results came back, she was visibly surprised that I needed a much lower dosage of steroids than she thought I would need! She qualified this by saying "Believe me, the doseage will go up, and continue to go up"
Well it didn't. It continued to go down. After 2 years I was off steroids altogether, despite having been told I would be on them for life!
I truly believe the mind is a great healer, and I subscribe to Reiki, and the power of universal energy in general.
I guess all I am saying is that there are alternative paths to healing, and if you believe in them, they work (of course) smile

Annobel Wed 11-Apr-12 22:23:34

I was told that I'd probably be on steroids for up to two years - certainly not for life. I hope that this will come to pass.

petallus Thu 12-Apr-12 10:33:10

What a good idea to start this thread.

I was diagnosed with PMR 3 years ago and had all the symptoms already mentioned. My ESR at the time was 111, so quite high. I was put on 15mg Prednisolone and for at least the last 18 months have been hovering between 3 and 5mg.

I have also recently developed a sharp pain in my right hip/groin which I had put down to PMR but which doc now seems to think is something else. I am awaiting results of a recently X-ray.

My mother had PMR and more or less got over it in a couple of years but it did recur to a lesser extent now and then.

I was lucky not to get many side effects with the medication. Prednisolone is much maligned on the forums but it save me from being housebound and in a lot of pain.

NannaAnna I am interested in what you have to say. I too think mental attitude and lifestyle could have a beneficial effect.

raggymac Thu 12-Apr-12 15:57:35

I am very pleased to see this thread too!

I was diagnosed in January 2010-so over two years now. I am currently on 5mg prednisolone with an ESR of 38. That's the lowest it has ever been.

My GP said that if I want to be pain free I should up the steroids, but I really don't want to as they make it very difficult to control my weight.

I am very stiff in the mornings and I have developed a lot of discomfort right at the top of my spine. I sometimes wonder if that may be arthritis.

Does anyone find alternative supplements or changes to diet help?

NannaAnna very interesting about your alternative path to health.

Annobel Thu 12-Apr-12 16:41:14

raggymac, sympathy. I'm finding the web site
supportive and helpful. It is such a relief to find other people with the same problems and questions as I have. Before my diagnosis I had a swollen right ankle and with steroids the swelling quickly disappeared. The doctor said this was unlikely to be connected with the PMR, but it seems that problems with feet and tendons can be part of the condition. Doctors seem to vary between those who want to get your dosage down as quickly as possible and others who want to keep you free of pain. You know your body better than anyone else. Do it your way but don't live in pain.

susiecb Fri 13-Apr-12 10:28:44

My mother had Rheumatoid Arthritis, I have Systemic Lupus Erythmatous and my eldest daughter has Psaioritic Polymyalgia. Mother and daughter moaned and groaned and made invalids of themselves - I moan and groan and get out and walk, play golf, take my medication keep my weight down and keep positive and dont go to the GP for every new ache and pain. You have to fight these things hard.

Annobel Fri 13-Apr-12 11:35:42

It sounds as if auto-immune conditions do run in families. My dad had PMR. He was so poorly that we had to pull him out of the bath. Then he got the steroids and was like a spring lamb!

expatmaggie Fri 13-Apr-12 21:15:44

All I can add to this is that in Germany it is an acknowledged fact that you need 2 years on steroids and then it should be over or the worst should be over.
A friend of mine is half way through and I do hope for her sake that this is true.
Nowadays it is considered best to be free from pain to prevent pain pathways forming between the muscles and the brain.

NanaAnna's doctor seems like one you could really do without. Why so negative when the patient is positive?

jeni Fri 13-Apr-12 21:55:37

I would agree. It is much easier to keep pain under control, rather than to control once you've got it!
If you see what I mean!

NannaAnna Sat 14-Apr-12 00:48:30

Just to add - and I don't know the medical basis for this but I've come across it a few times - if you develop PMR at 50+ (most common) it will probably last between 2 and 5 years. If you develop it before age 50, it will last for life. I was 48 when I developed it, hence the supposed 'life sentence'.
It is far more common in women than in men (as are all auto-immune conditions) and I am firmly of the opinion this is because women feel they have to 'cope' whereas men will allow themselves to be ill. I know this is what happened to me. After a marriage break-up I felt I had no choice but to keep going for the sake of the children. I couldn't allow myself to ever be ill. Add in the emotional stress of divorce and the financial stress, and you have a recipe for auto-immune disorders. Your body finally says 'Enough!' and voila - you have no choice but to stop and evaluate what you are doing to yourself.
I took the time to find out what was wrong with my body, and thereby discovered the mind/body/soul link. I do believe you cannot treat any one element in isolation. I am now much kinder to myself, and I do not allow negativity into my life. I am fit and well, physically and emotionally. To anyone who is suffering from PMR or FM, Lupus, or any other auto-immune condition: please be kind to yourself and help yourself to heal.

susiecb Sat 14-Apr-12 10:38:25

Exactly Nanna you do have to lokk after yourself, recognise your limitations but do have some challenges and stay positive. I tried to do too much this week without proper rest and a melt down ensued yesterday afternoon - feel much better now after a lie in and cancelled a day out today in preference to a quiet day around the house doing some chores but nothing major.

expatmaggie Sat 14-Apr-12 11:02:19

It is a bit of a chicken and egg situatiion. What came first? Becoming ill can make you depressed, tired and stressed and negative and tearful and unhappy. If by some magic wand all your health worries and pain were taken away you would be surprised what a posiive person you really are.

There is a tendency these days to blame people for being the kind of people who get ill, be it cancer or migraine or other serious painful illnesses.

This is just a cop out for others not to worry should it affect them and for doctors who prefer this, to saying they can't do much to help.

A few centuries ago nobody ever expected to be well. They expected to become ill and also they knew they could die at any time, they knew their children could die at any time. I heard Dr Robert Winston last week on Radio 4 discussing the early death of Mozart. That is what he said and my thoughts about illness are similar.

That is why we should not forget when we are ill, to try to accept it as a fact of life. And then hope that your boss also sees things that way!
And then take what modern medicine has to offer and take it.

annodomini Wed 03-Oct-12 14:23:23

Just had another look at this thread and am wondering how you all are. I'm now on 4.5mg of prednisolone (4 and 5 on alternate days) and seem to be adjusting to it. Taking it slowly now. I am determined to take more exercise and have joined a gym where I can go swimming and do aqua classes. And they seem to be a nice friendly crowd there. How do the rest of you cope with exercise and things like gardening? Strangely I didn't feel tired doing 45 minutes of aqua zumba today but five minutes in the garden just about wipes me out!

annodomini Sat 10-Nov-12 09:35:12

I'm returning to the thread to give a useful piece of information to other people who, like me, are trying to reduce their steroid dosage. The web page was written for patients suffering from another condition but also using steroids and hoping to get off them. I found the information very useful.

Fondasharing Sat 10-Nov-12 16:46:04

PMR is an autoimmune disease. My husband has something called psioriatic arthritis, another autoimmune disease and I would like to share the benefits of many years of research trying to find the answer to this miserable, painful disease....the symptoms of which are similar to PMR. It seens that the Medical Profession's only response is to pump people full of medication and keep the pain under control. The drugs they use are toxic in themselves and are not the answer in the long term.

This is what I have discovered on behalf of my husband over a period of 14 years!!!

Your Immune System is definitely affected by what you put into your body i.e. food, stress, mental attitude, environmental factors etc.etc. and it is important to find out just what is causing your immune system to be "out of order" and with PMR and arthritis, inflammation which attacks the joints and gives sufferers so much pain.

There are many books on the subject and one I have used recently is called "The Autoimmune Solution". Another excellent book on the Immune System has been written by your own Gransnet contributor, "JessM", called "Your Intelligent Immune System".

Here are some of the main factors which can cause the problems:

"Foods known to cause inflammation"
All Wheat products
Dairy product
Citrus Fruits

Try for one month without these items and see how you feel. Then introduce them one by one and see how your body copes.

Read the Paleo Cookbook for ideas on which foods you can eat which will not cause inflammation in the body.

"Supplements that help"
Probiotics (essential for your gut health)
Boswelia or ginger
Fish Oils
Joint formula
Vitamin D3 in high doses with K2 added.

On top of all this, try to reduce stress in your life by exercise, visualisation, yoga, meditation or whatever helps you to relax. Try to improve your outlook on life by reading or watching positive books and films.

I share this with anyone who has had these painful conditions, as they really do help. As my husband has has made the difference of "wanting to live a full life again", instead of being in constant pain and the fug of being pumped full of drugs. Regards to all of you who have suffered.

JessM Sat 10-Nov-12 17:09:04

Well thank you for the plug fondasharing . Only on Kindle, but on other ebook platforms soon. smile
Definitely needs to be a lot more research into why the immune system sometimes starts attacking its own body cells and causing all these different auto-immune diseases. Steroids are a blunt instrument aren't they. My mum was on them for decades.