Recently diagnosed polymyalgia

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Hi All

Just last week I was diagnosed with polymyalgia. Diagnosis was confirmed after weeks of stiffness in shoulders, neck, extreme pain in upper arms, hips & thighs. Finally last week I was admitted to hospital as I was practically unable to move.  Diagnosis was made after a series of blood tests and intravenous steroids were given. I can't begin to explain the relief I felt within hours of receiving this medication however, now I'm super worried about the side effects of this medication. I was initially given 2 intravenous shots of 60mg over 2 days then discharged and told to take the same dose of predisnolone orally for a week reducing by 5mg weekly. The following day I was seen in the Rhumatology clinic and advised that this dose was too high and it was reduced to 15mg for a month then 12.5mg for one month and then reducing by 1mg monthy until stop. Knowing nothing about steroids I've spent the last week researching and have discovered they can have really nasty side effects. Can anyone please give me an idea on things like how common is GCA whilst on steroids or is it extremely rare, also weight gain and moon face are they inevitable for everyone ? I've had no side effects as yet but it's only day 9. I should add my blood pressure which was high last week has now returned to normal and I've list 6lbs in 9 days. I've also been really tired and am having the best sleeps I've had in years. Any info / advice is greatly appreciated.

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  • Posted

    I suggest you visit the dedicated PMR and GCA forum on this site:

    https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

    where you will get far more info about living with PMR and steroids than most places!

    About 1 in 7 patients with PMR go on to develop GCA but the risk is reduced once you are on pred and the inflammation is managed. It isn't banished though. The pred only manages the inflammation and has no effect on the actual underlying disease process that gives rise to the symptoms so if it is going to, PMR can still progress to GCA so we must all watch out for the signs it may be doing so. Then you need a much higher dose of pred to manage the inflammation - but the rheumy was quite right, 60mg is the dose used for patients with visual symptoms of GCA, 40mg is used for patients with other symptoms of GCA and 20mg or so and below is almost always enough for "just" PMR.

    By the way - you are not simply reducing by "1mg monthly until stop" at all, you are looking for the lowest dose that gives the same result as your current 15mg. PMR has a median duration of 5.9 years, not months, and the majority of patients need pred for about 4 or 5 years before they get off. A few have it for longer, a few are able to get off pred in a couple of years - but in both cases they are the exceptions. Don't believe a rheumy who tries to tell you "2 years is too long to be on pred" or "no-one needs pred for that long". It is a chronic disease with no cure but one that can be managed well with pred as long as you take enough. And unlike most autoimmune disorders it does tend to burn out and go into remission sooner or later - just not as fast as some doctors would have you believe.

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    • Posted

      Giant Cell Arteritis - PMR's big sister which affects arteries in the head and can lead to loss of vision if not recognised and treated. You should have been told about it and warned of the signs. Especially since your rheumy was so surprised at the blood markers, high levels are often associated with GCA.

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  • Posted

    Hello Lanjax

    I have Chronic Urticaria (hives) and have had this...this time for over 3 years now and was quite severe. the doctors tried all different medications but did not help and i had no quality of life and was misserable . went to a specialist in John's Hopkins here in the states and was put on Cyclosporine slowly...hives improved but not gone until the doctor added PREDNISONE. after months i finally had relief and quality of life back. I have been on Prednisone now for 3 years...sometimes at higher dose but mostly at lower dose....I even got it down to 1mg for several weeks but unfortunately started breaking out in hives again so we have had to up the doseage again to 10 mg for a week then doctor has me start to go down 1mg a week. I have had no side effects and have done very well on Prednisone other than its scary when you hear its not good long term. Eileen said it all very well. For me PREDNISONE has been a blessing for me for quality of life....I pray intime that I will go into remission as this too is an autoimmune issue.

    I wish you well!

    Wendy

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  • Posted

    I am so sorry you have been diagnosed with PMR but you must be glad to get rid of that awful pain. I cut out gluten and simple carbs as I was told it stopped the moon face, I am not sure if that is true but it did work! It is true steroids have a lot of side effects on the other hand it is a wonder drug. You should really take vit D and calcium to fight one of the side effects. Your doctor should tell you this. You should also be offered a Dexa scan to check your bone density.

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    • Posted

      YES good info.....and my doctor checks blood every 3-4 months. yes VIT D AND CALCIUM IS GOOD. My doctor had recommended ALMOND milk.

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    • Posted

      My doc orders blood tests every month. I am MTX so she also wants to check my liver functions.

      Hoping you all are feeling some better!!

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  • Posted

    Sorry to hear you have been diagnosed with PMR, but glad to have someone who has it to talk with. I was diagnosed about a year and half ago. I started out with 30 mg. of steroids. It has been a roller coaster trying to decrease the steroids. I've gained about 20 lbs. & have the moon face & other swelling in my hands. I am hungry all the time. Sweets are my best friend. I started methotrexatrate (MTX .25 3/day)in May of this year. I am now taking .25 6/day. I was down to 15 mg. of steroids but still having all the symptoms, as you described. I decided to slowly reduce the steroids myself since I was taking the MTX. Big mistake I had a major flare. I could barely walk for all the pain I was experiencing & had no energy at all. My rheumatologist orders blood tests every month. When the results came back my c-reactive protein was up to 99. She said she had never seen anyone with that high of inflamation. She was so convinced that the tests was wrong she had me repeat them . This time it was 60, the top of scale is around .9. She told me that I had gone off the steroids too soon and that the MTX hadn't had time to kick in. Went back on the 15 mg. & within days I felt so much better. I've been instructed to slowly reduce the steroids. In one month I went down to 12.5 mg., four weeks later I went down to 10 mg. I am still on the 10's. I am beginning to experience the same symptoms & have been extremely tired. It's also important to have other blood tests to monitor your liver functions, etc. I have the blood tests every month. The other thing I experience is extreme sweating. I can be just sitting & break out in a sweat. My hair gets soaking wet like I just got out of the shower. I wish I could off of them but I don't think that is going to happen anytime soon. I see the rheumatologist tomorrow. I feel sure she's going to put me back on the 12.5 mg or may be the 15 mgs. I wish you much luck & hope you will be feeling better real soon. Please stay in touch with me.

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