Polymyalgia Rheumatica – Fast, Furious, Treatable

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3 thoughts on “Polymyalgia Rheumatica – Fast, Furious, Treatable

  1. I’ve had this dreaded disease for 10 years on and off. It was extreme. I had to quit my job, sell my home and move in with my daughter. Prednisone took away pain and allowed me to move my limbs. Without medication I was stiff as a board and could barely move without screaming. Prednisone nearly ruined the rest of my health, diabetes, wired and sleepless, and thyroid tanked, weight gain. A nightmare that isn’t over. My muscles were on fire, nearly unbearable. After tons of research and great effort I’m doing some better. I have to walk with a walker. I can no longer do many normal things. Life as I knew it is over. My biggest help was to go to a specialty place called, Nutritional Weight and Wellness. They put me on a special eating program and certain supplements. Inflammation went down, I got off medicine and I am beginning to gain strength and movement. It’s still a constant daily effort. This is a devastating disease. Prednisone side effects are a nightmare. Without prednisone I was stuck like a statue. What a cruel experience. I’m now 72. I didn’t drink, smoke or ever did drugs. I ate healthy organic foods and worked out at a gym. I was healthy active and had a good job until one day suddenly it hit like a Mack truck.

  2. Very few VERY VERY Few doctors talks about this problem…. especially orthopedists & neurosurgeons , that immediately talk about back surgeries when instead, the surgery will not resolve ANYTHING. The sad part is that these doctors know about this, but never NEVER refer patients to rheumatologists that would understand better the cause of the problem… Also it is not true that this disorder affects mostly people over 50s

  3. I might point out that the steroid treatment does ‘cure’ the symptoms but NOT the underlining disease, that goes into remission in its own sweet time. You are not pain-free, most sufferers get to around 70% pain-free and it can fluctuate as you reduce. The next problem is the side effects (around 85 of them!!) of the steroids themselves and the addition drugs prescribed to counter them – some have additional side effect and so it goes on. Most, if not all medics, will try to get you to reduce far too fast (way beyond the 10% reduction recommended by experts at each dose) and you end up back where you started (yo-yoing) and ending up taking more steroids over a longer period.
    I’ve had PMR for just over 2 years and there are lots of other fellow sufferers who still have PMR several years later if not for life!! It is a juggling act to reduce to a level where you reach your maintenance dose and hope and pray that the underlining inflammation is under control so you are not in more pain because if you go too fast and too low a dose it all comes back again.
    I firmly believe mine was brought on by a sustained period of stress having been very fit and active all my life. I was involved in sports of all varieties and even since retirement (from paid employment), 16 years ago, have walked miles and cycled on a regular basis. I’m a School Governor in two schools and don’t enjoy just sitting around.

    In my first few months; I experienced a great deal of fatigue, my muscles wasted and felt like lumps of lead along with the ‘brain fog’ and the ‘brittle skin’ which at the slightest knock turns into a large bruise. I found it very hard to get back to some sort of fitness and I really had to ‘push’ myself without upsetting my body or the PMR – quite a balancing act!

    I’m nearly 76, male, well within my BMI (22), eat a balanced diet and now at a low dose (2 mg prednisolone), able to walk (with a slight waddle!) every day but have some difficulties with stairs and hills. I hope this helps others who have been told by their doctors – who most likely have not experienced PMR or GCA – that the patient – YOU – know what’s happening and it is painful and sometimes depressing because YOU are the expert.

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