Polymyalgia

Well done, NannyJanny. That is an unusually fast reduction. I had the diagnosis in 2011 and after a number of setbacks, am now on 4.5 mg and taking it very slowly as I don't want to risk a flare again. Doctors tell you it lasts 2 years. Sometimes it does and often it goes on a good deal longer. I find an online forum very helpful and there's a good explanatory book by Dr Kate Gilbert: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, available from Amazon. The web site is www.pmrgca.co.uk/content/home-page.

Have got two friends that have been diagnosed with this,one friend it took seven month for doctors/hospital to confirm diagnosis but is now on steroids and doing ok,other friend was diagnosed very quickly and prescribed steroids which she weaned herself off very quickly unfortunately after she stopped steroids few months later had really bad flare up again and had to go back on steroids on high dosage again to get it under control, happily both friends now doing ok, hope you get everything sorted I have seen what a debilitating illness this can be good luck

I was diagnosed in 2012 and got down to 1mg about four months then had a bad flare-up, so I put myself back up to 5mg immediately and it calmed down. Since then I've been closely monitored by my GP and have been coming down very slowly, on her advice. I'm on 3mg, and am about to go down to 2mg. She has advise me to stay on 2mg for 2 or 3 months minimum, to give my system time to stabilise, then more blood tests before reducing to 1mg. I'm happy to go along with this, and am hoping [fingers crossed emoticon] to be steroid free by the Spring.
Well done to have reduced your steroids so quickly NannyJanny, and I wish you all the best with kicking this very annoying condition.

that should have been 'about four months ago'

Thanks for comments folks, I may have come down to 2.5 too quickly, not sure if I'm having a flare up, having stiffness in hips and knees but this could just be my old arthritis coming back. Don't have pain getting out of bed which was v difficult before steroids, seeing GP next week for result of last blood tests so we will see. How did your flare up manifest itself Indinana?

I tried to get out of bed one morning, NannyJanny and couldn't straighten my back at all - I could hardly move to be honest, pain in my back and my hips and knees. It had calmed down within 4 or 5 days after I started taking 5mg again.
When I saw my GP about two weeks after the flare-up she suspected that it was more arthritis than the PMR, because steroids suppress all aches and pains, not just the PMR, so obviously these all come to the surface when the steroids are reduced.

Yes Indinana, my current aches and pains feel more like arthritis, the PMR pains were more in my muscles than in my joints which I found very difficult to explain to the GP. I couldn't get up from a reclining position, couldn't pull the duvet up because my forearms hurt and if I dropped anything on the floor it just had to stay there because of the pain at the top of my thighs when I tried to bend down. I really struggled to put socks and trousers on and was feeling very old and disabled, it was a relief to find out I had a curable condition.

I don't like taking steroids, mainly because of the osteoporosis issue but they really are effective and I was feeling so much better within one day of starting them. I have been lucky not to have many side effects so far but am wondering if they take a few months to show up. How have you been with them?

A close friend of mine had PMR about 4 years ago and one of her symptoms was extreme fatigue . She has recently been plagued with very dry eyes and has been treated for at least 12 months , now the fatigue has returned and she has a very dry mouth and throat. This has now been diagnosed as Sjogrens Syndrome which is another auto immune disease and has close links with PMR . It is a complex condition along with other diagnoses. She is very depressed with her life, is this common? She is 79.

Thanks for recommending the book Annodomini, I have downloaded it onto my Kindle. Thanks also to Tinaf1 for your good wishes.

Hi annsixty, I can understand why your friend is very depressed, I am 62 and I felt so old and useless when I first got the polymyalgia, I feel a lot more positive at the moment but if I was your friend's age and faced with yet another debilitating condition I think I would be very unhappy. I'm sure it must help though to have a caring friend like you. I hope she can find something positive to look forward to.

My GP thinks I probably have PMR and I've an appointment at the hospital in a couple of weeks so not on any medication yet. So far I just feel pain when I get up and it goes off quite quickly once I get going. The steroid treatment worries me, especially suggestions of weight gain and developing a "moon face". Can any one advise on the likelihood of these please?