Polymyalgia Rheumatica

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I am 41 and diagnosed with polymyalgia rheumatica after years of pain. I have been given 20mg of

Steroids to take initially. After reading side effects and other PMR forums I am finding it so hard to

Accept tthe fact I will most likely need these forever to control the symptoms. I worry about the

Effects of the treatment as my weight yo-yo's anyway. Had a complete emotional breakdown

On the way home. I'm so tired and frustrated with the world. Am I the only one feeling this. Any

Advice most welcome.

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6 Replies

  • Posted

    Hello Angle eyes

    I'm so sorry to hear you have just been diagnosed with PMR and at such a young age as well.

    You say you have been suffering from years of pain, and it would be most unusual for someone even younger than you are now to be suffering from/diagnosed with PMR, although it is not unheard of.

    Were you diagnosed following ESR and CRP blood tests which showed raised markers of inflammation? As there is no test to confirm PMR, the diagnosis is very often made following tests for exclusion of other conditions such as rheumatoid arthritis. Also many people in this country are suffering from Vitamin D deficiency which can also lead to pain in many body areas similar to that of PMR. Specifically, the main areas of pain in PMR is felt around the shoulder and hip girdles, down the front of the thighs and in the lower spine, with many patients being unable to lift their arms at diagnosis - does this sound similar to your experience?

    Rest assured that if you have got PMR, it does not mean that you will have it and be on steroids "forever". Some people recover in 18 months to two years, whilst others take a little longer but even then, as long as the steroids are doing their job of controlling the pain you will feel so much better as you reduce the doses. You should in fact be feeling very much better with about 70% relief of your pain within just a few days of taking your initial dose.

    The important thing now is not to be in any hurry to reduce the steroids - you will need to stay on the starting dose for a good 2-3 weeks before considering any reduction and then, if you feel much better and blood markers have normalised, you should only reduce in small steps, for instance to 17.5 initiall

    We have to learn to help ourselves and give ourselves lots of TLC to allow the steroids to do their job of controlling the inflammation that causes the pain. Many of us have learned to our cost that if we overdo things on a good day, PMR can come back to bite.

    Another way of helping ourselves is to watch our diets and reduce our levels of refined carbs which can help to offset the weight gain experienced by some patients. Any weight gain will only be temporary and it always subsides as the steroids are reduced.

    Leg pain permitting, it is a good idea to get out for a daily walk, even if you can only manage 5-10 minutes at first. Apart from the exercise being helping to maintain your muscle/bone strength, a walk in the fresh air releases those feel-good endorphins to lift your morale.

    Yes, it is a frustrating illness to be diagnosed with but you will soon learn to accept the diagnosis and get back control of your life, feeling reassured that it is a life-changing illness for a while but thankfully it is not life-long or at worst life-threatening.

    I do hope some of this helps and that you start to feel much better soon.

    MrsO

    .

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  • Posted

    Mrs O.

    Thankyou so much for your reply. I've had two lots of blood tests of which esr/crp and pv have all been

    Raised. I am a little overweight and in the past doctors have suggested weight loss. I have done but

    Chronic pain present on many days.

    My doctor is lovely and thankfully she listened to me instead of judging my size. I'm 5ft 8' and a size 20 /22.

    I jhave been bigger than this in the past. She is trialing me on steroids to see if it eases my pain. If not it will

    Be diagnosed as fibromyalgia. To be honest at my age or any any age, neither is nice to have.

    I work part time for the NHS and am a full time student whom is off to university in September to do adult

    Nursing so this is an inconvenience to me. I feel down about it all, am on a reduction of anti depressants

    Aswell so all is having a knock on effect atm.

    Once again, I thank you very much for your advice and wish you well in the future

    Sam x

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  • Posted

    Sam

    It would be unusual for your ESR and CRP markers to be raised with Fibromyalgia. But very quickly as we are off to the theatre, if you send me a personal message with your email address I will try and send you a paper later this evening or tomorrow showing a comparison between Polymyalgia and Fibromyalgia.

    MrsO

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  • Posted

    Personal message sent xx
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  • Posted

    Sam, done! Hope you receive it safely and it helps.
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  • Posted

    Please don't despair, AE; you are NOT going to be on steroids very long. Physicians want to get their patients off as soon as possible so, after 9 months now, you are probably at a reduced dosage and continuing to reduce it each month or so. You are very young to have PMR. As I understand it, the condition occurs in people over 70, a higher percentage of women than men, and I was told recently that most PMR patients have the Longetivity gene. I don't know if that last bit is true. I am a 74 year old American woman, retired, a native Californian. I have been fortunate in that the arthritis and tendonosis I have are relatively mild, or at least manageable. In the beginning of 2014, I was extremely stressed. I was in the process of selling my house, looking for suitable housing, dealing with personal issues as well when i experienced sudden incidents of joint pain that were a precursor to PMR. There was an episode of Pseudo Gout - very painful and puzzling - this was additional stress. Then, one morning in January I woke to find I could not raise my arms above my waist to move the bedclothes off. I don't want to go into a play-by-play description of the pain and panic, so I'll cut to scene inside the Rheumatologist's office 2 weeks later where she prescribed Prednisone in high doses for 2 weeks. It was miraculous! Within a day I had full range of movement back, plus my usual arthritis and tendon pain was non-existent. I am now down to 2 mg Prednisone a day and experiencing the return of arthritis and tendonosis. I feel mild pain in the neck and shoulders and sciatic nerve, but manageable right now. What is very upsetting is that my hair has thinned and shed so much. I am disappointed to discover how vain I am, but it is devastating to have this loss on top of what time and gravity are doing as well. I read other posts about hair loss happening at time the steroid dosage is being reduced. My Rhematologist believes the high dose in the beginning of treatment is the mechanism that triggers the scalp/hair change but that the actual shedding occurs later as the body re-adjusts. This makes sense to me as I have only now experienced scalp sweat and hot flashes, excessive perspiration, especially for one who has rarely perspired through out her life. So this gives me hope that my hair will start growing back once I am completely off  the steroid. The good news is that it has hightened my awareness to the destructive power of stress and self-neglect. I had stopped my daily exercise regime and ate convenience food during the time I was preoccupied with handling the sale of my house and sundry other issues. I am following the very good advice i have found here and other sites and beginning a change in food and lifestyle. I plan to use probiotics as well since I have digestive disorders which I believe are hereditary. So, I hope that you have aceepted your condition as manageable, AngelEyes, and are doing just that. Please update us so that we can learn something from your experience.
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