Is that Polymyalgia?
Posted , 18 users are following.
Hello everyone, I am so glad I found so much valuable information from real people with real stories in this group. What I missed, though, the age of the people suffering from this illness. It is important to me as I am 38 old woman and two months ago I suddently started having severe shoulder pain and a feeling of "a knife stabbed" into my each top part of the arms. Which went away through the day. Well, for a first week only. Second week from the start of the symptoms I started having pain in my small joints like fin gers and wrists. Third week on pain in my hip, shin pain, knee joints, neck. By week 4 I simply was bed-bound. Need assistance going to toilet. And it did not go away not even for a bit. Although, it did feel better in the second part of the day. Painkillers did no good. So sleepless nights and agonising days. GP, first, thought I've got reactive arthritis and put me on 15mg prednisolone for 15days. Tappering down every 5 days. It did ease the pain but not completelly. I never was pain free within those 15 days. After I stopped steroids, the very next day I was in agonising pain, crying and unable to move a finger. Then I saw another GP, who suggested I might have Polymyalgia. He put me on 30mg pred a day. The very next day I could sleep through the night. Two days later I was much better. 7 days later got back to physical training. I am on this dose for 4 weeks now. And should reduce the dose to 20mg in a few days time. Which I am really worried about after reading many of your posts and comments. I would not be able to cope with that pain once again.
My question is how common is to have this condition at this age? Do you guys have joint pain as well as muscle pain? I only found few sources that say polymyalgia also may lead to joint pain. I am really scared, lost and feel like sitting on a bomb. Any comments welcome and appreciated a lot.
0 likes, 37 replies
lodgerUK_NE gabibd
Posted
I have sent you a private message.............
gabibd lodgerUK_NE
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Michdonn gabibd
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gabibd, PMR affect people at your age, but mostly older people. I would not reduce the Pred at the rate you are suggesting. Reducing too quickly and you could have a flare and be in worse shape. I will not reduce if I have any PMR pain. Normal reductions are 10% or less. Check this website out for a tapering method. Good luck on your journey, try to think positive and smile. Smiling 🙂
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
gabibd Michdonn
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EileenH gabibd
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You are younger than usual for PMR - and many doctors will not consider it as a diagnosis for patients under about 50. That doesn't mean that people who are younger don't get it - but I believe they are fobbed of more often than not with diagnoses of fibromyalgia (which does NOT respond to pred), somatism, depression and CFS/ME.
Some people have joint pain but for most it sees to manifest as pain in muscles and stiffness. You may be able to reduce relatively easily to 20mg - that is still a "normal" starting dose, 30mg is at the high end for PMR.
If your GP thought you had reactive arthritis - why on earth did he taper the dose so quickly? That isn't going to work for anything much. As you have obviously gathered, PMR is not a short-lived problem - so what is this doctor intending to do after 20mg?
This is our resources post - and somewhere in there is a link to a paper we call the Bristol paper - which describes a reduction schedule for PMR which does work fairly well, reducing the number of flares which usually occur because of trying to reduce the dose too fast. Once you have found out what your doctor is intending, discuss slower reduction with him, a slow reduction plan is in the replies section of that thread.
But really - your GP should be sending you to a rheumatologist to be sure there isn't something else going on. And also - don't overdo the physical training. The pred only relieves the inflammation - the actual disorder, an underlying autoimmune problem, continues in the background attacking your muscles and making them intolerant of acute exercise. Gentle and moderate exercise is good - too much is not.
gabibd EileenH
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that is why I have changed the GP because I did not like his attitude or the way he was dealing with my situation. It seemed he did not believe I was in such a bad pain. My new GP discussed the idea that it could be Polymyalgia, based on blood test results and how I responded to steroids. His plan is to get me on 10mg rather soon and then long tapering down. He said at least a year.
I read the thread about reducing doses and,as I said, am even scared to try. I will though liked the idea of reducing at particular pattern (1new-6 old dose etc).
My exercise is more of getting some form of fitness back which I lost so quickly.
I am a woman who was enjoying sculling, walking and travelling and I want it back.
nick67069 gabibd
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of course you can get it back... just do it slowly. Prednisolone dulls muscle pain, so you have to careful not to overdo it. Any activity that is at the level that you don't lose your breath is fine, or in more precise terms anything lower then 70% of your maximum effort is beneficial. Once you cross that limit, you have to be really careful, since steroids you take reduces body's ability to repair muscle after acute exercise. It took me almost a year with gradual training to get back to previous level of fitness.
As far as taper, use gradual DSNS method and do not reduce more then 10% of the dose at the time, especially below 20mg. As yo approach 10 mg, make sure that you slow down even more. I hate to tell you, but average PMR last 5-6 years... Some are lucky to get off the pred after 2, but prepare your self for a long run.
gabibd nick67069
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I have got so many questions in my head now. Like the reasons? What is causing that infection in the body? Is it possible to find or try to find the main cause (bacteria, virus, hormones, food allergies, radiation etc.). I believe, if the cause could be minimised the illness would stop sooner. But how?Where?
EileenH gabibd
Posted
It isn't an infection - it is inflammation of the blood vessels somewhere, in GCA it is larger arteries, in PMR it is probably the smallest ones. There is no known main cause - over time various stresses, infections, emotional or physical stress, and other things such as environmental factors upset the immune system and eventually something is the straw that breaks the camel's back and your immune system goes wrong. It is unable to recognise your body as self and attacks it as if it were a foreign thing, as it does with viral and bacterial infections. There are other factors - including genetic predispositions but it is NOT hereditary in the real sense of the word.
Nothing is known that makes it burn out and go into remission sooner - except now a biological drug - and the pred only manages the inflammation to allow a better quality of life, it isn't a cure. But PMR and GCA aren't bad in the contect of autoimmune disorders - PMR doesn't kill or cause long term damage. It may if it isn't managed, long term low level inflammation isn't good for the body. But for 75% of patients PMR burns out in 2 to 6 years - and then you can get off pred, for the majority of people for good. A few people have relapses but it isn't common.
christophe38948 gabibd
Posted
Hi,
From few days I am joining the Discussion Group of PMR "recipients". Different people, different opinions. There is difficult to say how to manage, what doses are god or better or how to go down with the doses.
Yes! I have terrible experience with the PMR as well as with the doctors. For some it is like flu for other is like "be careful" this is danger and you can died after some of the dosses you have taken.
SO! The only eventual experience, I know that could be painful, could establish the level of doses and your comfort in life. For last 8 months, after being on 15mg/day for 6 weeks, I am going down slowly, presently on 4mg/day and I pray that I end this medication just before the end of the Jan'2018 and will not be return because I will not be able to live with these side effects any longer.
In the meantime I got breathing problems (test of my lungs are OK) vertebra problems (diagnosed as DDD), walking problems (unknown source) and additional collapse on the street causing head problems (unbalance, ringing in ears, vision and continuous headache). Additionally my body temp. running between 35.4 and 35.7C.
Warm Words for you.
CW
gabibd christophe38948
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susan08542 christophe38948
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christophe38948 susan08542
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Thank you for your comments. My problem is more related to the Health System in my province (Canada). From 17 months after accident I cannot get consultation with the specialist in neurology. Bureaucracy is huge and determining the treatments results. I can only pray and patiently wait and believe that another appointment within 5 months will be before my stroke.
Regards,
CW
Anhaga christophe38948
Posted
Which province are you in? I'm in NS. My husband finally saw a neurologist about his shaky hand, after very long wait. Diagnosis dystonia, treatment recommended but after several years no appointment for the treatment has ever been made. He's given up trying to make an appointment.
christophe38948 Anhaga
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Thank you for your thoughts. I am in ON. Every day I have different observations or effects of something. I found also my shaking hands are worse and worse. Thanks of my wife I am still washed, cleaned and not hungry but in case of her medical problem we will die together. This is only hope that soon my problems will be treated but if not...?
Regards,
CW
Anhaga christophe38948
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Very frustrating isn't it. Call or email your MLA, the more stories like yours they hear the more likely things will eventually improve, if not for us, for those who come after. Good luck!
nick67069 Anhaga
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Anhaga nick67069
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I am actually lucky to even get a new doctor after old one retired, and ironically I have PMR to thank for that, on the day I presented myself to the duty desk and was told I wasn't eligible to see the doctor as I wasn't a patient there, though I'd been going to that practice for over 40 years. When a sympathetic receptionist saw the state I was in she got me in with one of the doctors, who diagnosed me very quickly, and within a week I began the prednisone journey, truly miraculous! But that practice, more than two years later, still has a sign saying they are not accepting new patients. It's estimated that about 90,000 people, in a province of about one million, do not have a primary care physician. You can go to drop in clinics, but that's no way to manage
any chronic condition. 😟