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.
Gabibd
I have sent you a private message.............
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
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.
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
Mine started with fingers aged 40 then progressed to pelvic girdle and shoulders.Diagnosed by rheumatologist aged 45.
Thank you EileenH,
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.
Thanks for positive vibes! I do smile! Even when it is much easier to cry. ☺
Thank you! Texted you back.
It must be something to get a life back...I believe...
That took 5 years to diagnose!!!!
Ya this was really tough for me to accept at 56 whereas I was in excellent physical shape being 5’10 at 187 lbs. and it hit me lke a tone of bricks. Tried all sorts of over counter pills. Nothing worked. When O was given 20 MG of prednisone it Zapped it!
Now at 9MG in the morning and 4 at night but feeling fatiuge.
Hi,
i am 62, diagnosed May this year with PMR and GCA. Started on 50mg, now tapering down. I was in extreme pelvic girdle pain, immobile, frozen shoulders, the works. I had every symptom and more, and still have issues with shoulder and arm pain, sometimes lower back pain, but I am under the care of a massage therapist for that. . I was extremely fit and active, a healthy specimen so to speak at 49kg. Seemingly overnight I dropped to 40kg and absolutely no muscle tone. The shock was extreme. My first reaction after starting the pred was “get your fitness and muscle tone back” so I could be stronger and build my strength again. Big mistake. The more I tried, the worse I got. Eileen gave me the best advice. Stop the “burn and bust”. I would have a good day, (mostly because I was like an energiser bunny on that high a dose of prednisone) and go full on. The I’d crash for the next 2 or 3 days. Eileen’s advice was to rest rest rest ....do something then rest, repeat throughout the day. It works. I’m still reducing slowly, I still have pain at times, but nothing like the original. I will not reduce if I flare, I wait till I stabilise then try 1mg at a time for 2-3 weeks but will take longer if I have to. Currently trying to get to 10mg. If I remain stable that may be my dose long term. We’ll see. I don’t predict. I listen to my body. It dictates the progress of my recovery. A positive attitude is your best defense. You will have down days as we all do. Have a little pity party, then wipe away the tears and push forward ...SLOWLY. We are all here to provide guideance and support to each other and the advice you will get on here is more valuable than some drs advice. Take it all in. BUT LISTEN TO YOUR BODY! 💪💪💪
The four weeks at highest dose is reasonable. But recommendation is never to reduce by more than 10% of dose. As Eileen suggested you *may* be able to get to 20 fairly quickly, but it would be wiser to do it in smallish steps. For example, 2.5 for a few days, rather than 5 all at once, and certainly less than 10 in one go.
Your doctor may want to get you to 10 asap, but it mustn't be at the expense of returning symptoms. As Eileen has said elsewhere, it isn't slow if it works. Always stay at each level long enough to be sure pain is not returning. This can be caused either by active PMR not being controlled enough, or by pred withdrawal, mostly avoided by a very slow taper. If what you have is PMR you should continue the taper but slower and slower until you reach lowest possible dose to control the symptoms, which you already know is a slow process. Of course it seems your diagnosis is not completely certain yet, so let's hope your doctor keeps an open mind and that your treatment continues to keep you as painfree as possible. The one thing we can say about PMR is, unpleasant a disease as it is, it is treatable and it doesn't kill! But it seems many physicians don't seem to fully understand how very slowly we have to taper pred when we have PMR. It's almost as though we have to fool our bodies into responding adequately to smaller and smaller dosage. A challenge indeed, and one we can take up as long as we feel well. All the best.
Please see your doctor ASAP! What you describe... Headaches and Vision issues are classic for GCA. Giant Cell is treatable. But immediate treatment can save your vision and prevent a possible stroke. My rheumy warned me to call at once if I had bad headache or blurry vision. Almost 15% or more of PMR patients develop or have GCA as well. Wishing you the best.
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.
Thank you so much for the advise on training. I need so much to learn...
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?
Thank you so much! I am so happy to have you all because it is scary, really scary as people around me dont get sick and I feel none of them understand where I am and how I feel. My husband doesnt understand or believe I am that ill. No support what so ever.
I think I will taper my way. Experiment. And will talk to my GP. Hopefully he will be with me on this and let me to decide with his support.
Thank you!
Oh dear. 😪You need all the support and understanding you can get., especially from your husband. May I suggest you either show him some of the comments from this forum or read extracts out to him. PArticularly from those of us who may have this more severely than yourself. He surely would give you help and support 5en