Finally getting there!

[Bignorhill]

I was diagnosed with PMR just over 2 years ago, I have never been keen on taking medication due to side effects but did go on to Prednisolone. I was determined to come off Pred as soon as possible and stopped taking after 18 months.

Since stopping taking Pred I have worked on an anti-inflammatory diet and worked with a Naturopath to take certain supplements. I have suffered pain since coming off Pred but have also lost the side effects of the drugs.

My recent blood test indicated that inflammatory levels were back to normal, but I was still having pain in my shoulders. In the last week the pain has subsided a lot with massaging and exercise. A lot of the pain seem to be where there were connections of muscle to bones (not sure if that is medically correct), my shoulder bones were painful to touch.

My conclusion (right or wrong) was that the PMR had caused a lot of strain on my muscles and joints and that PMR had probably gone but it going to take time to get the muscles and joints right again. So in my belief I was glad that I came off Pred and could totally understand what was going on with my body. You could be just taking Pred as a painkiller of muscle pain when the PMR has gone away.

I will always add everyone's body is different and their pain tolerance is different. I seem to have found a route for me that has got rid of PMR in 2 years.

By the way, throughout all of my PMR I continued to do Orienteering running 2 or 3 times a week 8km+ albeit at reduced speed. Doing Yoga was not so easy because the pain in my shoulders and arms was too much.

[SheffieldJane]

I am really glad for you that your plan worked so well. It really helps to take control. If this is possible of course. It is great that you have physical fitness as a base to work from.

[Bignorhill in reply to SheffieldJane]

Thank you.

[powerwalk]

Thats good you're feeling well. What side effects bothered you , was it the long term prospects or day to day side effects?

[Bignorhill in reply to powerwalk]

The Rheumatologist told me that she did not want me to be on Steroids for a long time. I never like being on drugs and the fact that you have to take even more drugs to counteract the effect of the Pred. The drugs tend to destroy the good bacteria in your gut and cause leakage from the gut putting more inflammation into your body.

[powerwalk in reply to Bignorhill]

Thanks, vicious circle!!! Best wishes you can stay off them.

[Bignorhill in reply to powerwalk]

Thank you.

[PMRpro Ambassador in reply to Bignorhill]

I take no drugs to counteract the effects of the pred.

[HeronNS in reply to Bignorhill]

I only took pred, nothing else along with it. Well, vitamins I'd have been taking anyway.

[HeronNS]

Glad things worked out for you. We often say that everyone is different. I do think it unfortunate that some medical professionals have an unwarranted fear of low dose pred which they communnicate to their patients. I carried on for a year without a diagnosis doing everything I could think of to keep/get healthy, and I had always lived a pretty healthy, active life, although no athlete. Without pred I was losing even the ability to drive my car, get out of bed, stand up from a chair. I was down to a dose of 3 mg (from start at 15) within one year. I have recently attained zero pred status and in the past four years my dose was on average about 2 mg. By the time I was that low I had no important side effects, thinning skin perhaps the only one I was noticing, but I was also aging at the usual rate!

[Bignorhill in reply to HeronNS]

Thank you for your reply, I hope that now you are at zero that you can stay there.

[Bignorhill]

It was confirmed today by the Orthopadics dept that my shoulder x-rays had shown tendinitis and bursitis, I believe that is damage from PMR.