I met a Doctor of Chinese Medicine the other day. She gave me her card and said she does online consultations. I thought she seemed very sincere and was not simply touting for business.
My question is has anyone with PMR been helped by Chinese Medicine?
I know that Prednisone is the only known way to alleviate sympoms (though not effect a cure) and that PMR takes as long as it takes.
Any thoughts...?
The worry is that pretty powerful substances are used in Chinese medicine, including steroids. It is not designed to be used alongside western medicine but instead of it. I do know of people who have had positive results with conditions like eczema though. Personally, I wouldn’t. I have enough trouble working out where I am with my disease as it is. However this is me, cautious to a fault.
Thank you Jane! I had a look at some past posts on C.M and they all seemed to say the same. I think we are all wise to be cautious.......
The short answer is no, Some years ago there was great acclaim for a Chinese medication which advertised itself as "steroid-free" and it did work apparently. PMR patients sang its praises.
Denmark smelled a rat and did independent lab studies on the ingredients and established it contained high doses of two forms of steroid - much higher than used conventionally in PMR and not closely quality controlled in manufacture.
Thank you Pro. It sounds as though it wouldn't be worth the risk especially as the quality control is dubious.
It is a question of trust I suppose - and I don't ...
This is my personal experience. As a scientist (Ph.D.Chem., Ph.D.Biochem.) having worked for 10 years in fundamental prostaglandin research, 16 years in pharma industry (clinical research development of new medicines) and 11.5 years at health autorities, I have a very critical mind, but I have an open mind and I have seen and read treatments that are working and may require more research. In 2008, I experienced several periods of allergic reactions and one anaphylactic shock, very scary. Since MD's couldn't find a reason, my case was investigated by Prof. Ebo in Antwerp, specialiseed in this and it was established that I reacted to substances in my own blood (so an auto-immine reaction). As a consequence I had to take each evening Cetirizine to prevent the allergic reactions. After 2 years of Cetirizine I learned about Reishi/Ganoderma (not only Chinese publications, also in serious western medical journals) and I started to replace Cetirizine carefully, not at once. While camping in the Netherlands in the morning I got suddenly urticaria, swollen lips, etc. and I begged my husband to prepare a cup of tea with Reishi. After 4 cups all symptoms resided, only the typical tiredness was still there. Also my husband witnessed how the reishi tea had been able to stop the allergy attack. I replaced completely the Cetirizine with Reishi/Ganoderma daily (recommended dose (4x 400 mg/day) and had never allergic reactions anymore. So I reduced my dose to 2 x 400 mg/day, since many years now.
Three years ago I got PMR, started with Prednisolone 20 mg/day, was able to reduce to 2 mg/day and got a flare after my first Covid vaccination with subsequent increase to 6 mg/day of pred. in cooperation with my excellent rheumy. Since then I am on 1 mg/day for more than a year.
Three weeks ago I suddenly got again the typical PMR symptoms in hips, knees, back, not so much in my shoulders. I had to take painkillers. Could barely walk with my dog. Should I call my rheumy to increase my dosage? I was tempted to try to increase the dosage of Reishi/Ganoderma to 6 x 400 mg /day . After 3 days I could walk the dog again, turn around in my bed, morning stifness and pain gone. It still improved and now after 2 weeks, I will as of Monday reduce again Reishi to 4 x 400 mg/day. I am keen to see the effect.
Reishi/Ganoderma is having an (proven) effect on the immune system, so it is possible that indeed it has also effect in the case of PMR. Until now I could find it once mentioned on the internet. I will search further because if serious research has been done, it could be useful to mention it. So far my own experience.
I suspect that quite a few on the forum would have potential contraindications:
msdmanuals.com/home/special....
Agree. But contra-indications are in case of all types of treatment very important. That's why I stressed that it is a personal experience.
And I only posted it for anyone getting excited about your experience to remind them to check against what they are taking!
That is very useful.
I’d urge caution. Aside from concerns about the manufacturing process, we need to understand contraindications. I guess many of us are taking other meds. For example, there’s mention of reishi mushroom in a post above. As I understand it, that’s a definite no for anyone on anticoagulant.
I’m sure the practitioner is apparently genuine and helpful but they’re also looking for business.
You could always try this. Take as much as you like as often as you like.😀
Wonderful stufff!!!!!
So, what is this stuff please Pro?
If you click on the photo you will see the entire image - and the drug is called Placeberol/intertaminophen. It is a play on the words placebo/acetaminophen (paracetamol). Even placebo sometimes works as well or better than a drug.
But if you KNOW it's a placebo???
It's an "in" joke I suppose.
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