When I was first diagnosed in the summer of 2018, I felt very much alone, though my wife and my physician in Northern Virginia were very caring and supportive.
The doctor put me on 15mg of prednisone and told me to stay on it for six months. I found you online.
It was this forum that made me feel as if I had friends from whom advice would flow unconditionally.
OK, sometimes I will speed-read your posts; at other times I will copy and paste them onto my computer so that they might be reflected upon.
All of you, I thank. You have been there for me when I was lonely with pain. You are there as I find my old self once again.
Paul
Written by
PeaceableDragon
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That’s so lovely of you PeaceableDragon. Everyone will be so happy this forum is serving such a good purpose. Best wishes for a continuing good recovery.
Glad we could be of help and support you, and reduce your sense of isolation. I had the same experience with the forum, especially in the early months after diagnosis.
I remember going home from hospital with a large bag of pred and some leaflets and feeling thoroughly confused, though glad to have a diagnosis (even if I'd never heard of the two conditions I now knew that I had) That afternoon I searched online and found this forum, the best thing I could have done in the circumstances. It was so reassuring to find a community of fellow sufferers, especially ones who were so articulate, understanding and supportive.
I feel exactly the same. I was told take your meds and then you'll feel better. End of Drs talk. Oh and you'll be better in 2 years. 3 years in here I am. Thank God for all these knowledge, dedicated, and friendly people. ❤️
Thank you Paul,l also find this forum so helpful and friendly,l hope that you will soon be feeling your old self again,that is something we are all aiming for.
I am waving to you from Charlottesville VA, with painful upper arms, and wondering if I might need to get the name of your doctor in Northern VA--eventually, if mine won't approve enough pred! This forum is a lifeline.
I know exactly what you mean by painful upper arms, but are you sure this is PMR?
The whole experience of PMR has been an education for me in the workings of the human body. When it hit me, I had no experience to help understand what it was that caused so much pain.
My family doctor is a good person with whom I have had years of good communication. However, it was his resident who caught the symptoms and made the initial recommendation for 15mg of prednisone. That did the trick within hours! However, I was bouncing off the walls within a couple weeks on 15mg. The family physician was reluctant to reduce me until after 6 months. It was reading the PMRGCA website that I found a recommendation for tapering from the British Rheumatological Association that made sense.
Each of us have to find the way that our own bodies respond to prednisone. I cannot imagine what people did 200 years ago when confronted these conditions.
I had a team of people helping me- one of my tai chi students is an MD with specialization in functional medicine and she spent hours discussing supplements and life style. My wife is knowledgeable in essential oils and she provided advice and loving support that has been transformative.
I send you our very best wishes for a recovery that is perfect for you.
Thank you for your kind thoughts. Just a quick answer. My case is weird in its own way. My rheumatologist, who is very kind and also fairly new to my care, guessed PMR last July when I first developed all the symptoms you describe in your post. Since then he has been reluctant to confirm the dx for a variety of reasons, including my complicated history of other autoimmune diseases that might explain my pain. I have been on 7 mg of pred for 16 years and there us a push to get me off it, by switching me to an equivalent dose of hydrocortisone which is more bioidentical. He has been adding 1 to 2 mg pred to my HC, hoping it will help my PMR symptoms. It is isn't really as whacky as it seems, but I don't want to bore you with further detail. So, more than my arms hurt, but they are what I'd need to wave! All the best with your very promising recovery.
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To all the good people who contribute to this site and Patient.co.uk as well.
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