So Its April 2019 and at the end of September 2018 I was diagnosed with PMR, the local NHS service dismissed me for the most part of 3 months as general aches and I was told to "go and see a physiotherapist". In the end a private GP diagnosed me and gave me a trial course of Preds to see if I did improve and did a full blood scan. Low and behold 24hrs on a 20mg dose and I had no pain and could actually put a shirt on and tie my shoes without crying. I am struggling with the Preds though and making significant changes in my life to change my diet (even more) and lifestyle, although I'm a Triathlete and being unable to train last year has been really tough more mentally than anything else.
I do have some questions though
1. Has anyone heard of anyone else my age being diagnosed?
2. Is anyone trying CBD oil to assist with the Preds
3. Has any male had serious side effects to the Preds, I'm aware its more common for women to have side effects but not men?
4. I've heard you never get rid of PMR you just learn to control it?
Thanks very much
Mark
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Maddy42
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1. - Not many. There was a guy a year or two ago who was in his early 40s but his version of PMR was a reactive form, due to another underlying disorder. There are a few reports in the medical literature and the youngest on record is a 24 year old for whom the eventual presumptive diagnosis was PMR.
There is a report in the media of a 37 year old who died of stroke caused by GCA - proven at post mortem. The pathologist is always right! If you can have GCA - you could equally well have PMR. I believe the reason there are so few young suffers is simply because the doctors have blinkers on and young patients are diagnosed with other things or just ignored as attention seeking, both male and female.
2. Put CBD in the search box at the top right - you will get a load of old threads about it. The jury is out - some say it helps, some say it doesn't, some find they sleep better, some don't. There is no evidence about dose and all the other potential variables so it is a bit hit and miss.
3. No idea to be honest - not something enyone has brought up before. Most so-called pred side effects can be managed or minimised when you know how - and in PMR they aren't actually as bad as claimed, with some of them being events taht occur without pred:
4. PMR is said to be a self-limiting autoimmune disorder - for 95% of patients it eventually burns out and goes into remission, remaining in remission permanently for a large percentage of them. It is possible to have multiple episodes, it is possible to have one long episode lasting many more years than average but both scenarios are unusual/rare.
This is an overview of cdb oil. Steroids are one of the drugs on the lists that can be contraindicated.
Hi mark I was diagnosed with PMR in October 2018 and started on 30 mgs prednisone. In December 2018 I started using CBD oils under the guidance of a homeopathic/ herbal medicine therapist . Now I take 16 mg pred ( tapering very slowly ) at 8 am and then a satvia oil which is energising and uplifting between 12 noon and 1 pm . Then again at 5 pm . At night I take an indica oil which is relaxing and calming to help me sleep .
Her instructions were to start with one drop 3 times a day for a week and very , very gradually increase the dose .
At first I wasn't noticing any difference whatsoever and nearly gave up after a couple of months , but I persisted and once I got to 5 drops at noon, 5 pm and approximately 11 pm I started to notice an improvement.
The satvia oils definitely help with the fatigue - I have a real slump in the afternoon if I'm out and have forgotten to bring my oils with me . The indica oil definitely helps with my insomnia too . I've always slept very badly and at first when I started on prednisone I was needing zopiclone to sleep . Now I find I can manage with the indica oil and nytol . If I wake in the night and struggle to get back to sleep then I have a few more drops of oil which usually does the trick.
I'm still increasing the amount of drops I use and wouldn't be without it now . It's no substitute for prednisone but I think it helps manage the fatigue, some of the pain and the insomnia. I hope this info helps . PM me if you want any other information. Katie
Others have answered your questions. I wanted to add that I experienced shock and confusion when my symptoms emerged in Dec/17 (55 year old woman). While it took 6 months for the medical professionals to figure out what it was, my symptoms got worse and I was very scared of the unknown.
Once diagnosed and on pred I became relieved, but angry because I had just retired. I was sad that i would have this condition for years, and scared of the potential side effect of pred.
Eventually I accepted my situation, and now 11 months in I’m doing much better. Hardly any side effects and overall managing things well. Adjustments have been made with lifestyle, especially diet, which help. Not everyone gets the side effects.
I’ve read on here about men with PMR, and some seem to have had an easier time tapering down, and shorter time with the condition.
Wishing you all the best and remember you are not alone. This forum is filled with the collective wisdom of thousands of folks who have a lived experience of PMR/GCA, and we’ll “get it” more than most. Hope you can maintain your activity level, but do be aware that you may need to build up your activity level slowly.
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