Hi everyone, it has been about a week since I was on this forum. I have been doing more research and have a couple of questions to run by everyone. First, has anyone ever tried Serrapeptase, a supplement derived from silk worms? When you read reviews it sounds good but I am very sceptical. Also does anyone remember having any type of puncture wound a few weeks before coming down with PMR symptoms? I wonder if it could be some sort of virus. I work with wildlife and seven years ago a few weeks before the symptoms, I received a bad pucture wound from an owl and when the symptoms reappeared a few years later it was under similar circumstances. Just thought it was worth putting these ideas out there and see if we might come to some possibilities. It just seems that since symptoms come on so suddenly, we should be able to find some common circumstance that happened. Thanks, David
This comes up every so often - and really, noone has identified anything we all have in common. It is something that gets discussed amongst researchers - there have been suggestions and claims of virus infections before until loads of patients are tested and no, they don't all have whatever virus was flavour of the year. Like almost all autoimmune disorders, it is likely to be a whole range of things until some one thing is the proverbial straw that over loads the immune system. There is a decided genetic bias in that it is far more common in people with Scandinavian genes - and equally is more common the further north people life so that there are far more cases in northern Germany than in southern Italy - but that could also reflect the genetic thing again. Or the amount of sunlight. Or the temperature.
PMR is just the name for the symptoms, many painful muscles. There are definitely several causes of these symptoms and what we discuss here is just one version - the version that isn't cancer or other obvious illness and, above all, the version that responds to a moderate dose of pred. There are versions which seem to respond well to antibiotic use - so not a viral source probably.
It doesn't always come on suddenly either - mine started as "no spring in my step" and it became increasingly difficult to do step classes. Then I ached a bit, and my quads hurt after 2 mins on the crosstrainer. None of it was anything like the overnight OUCH a few years later when I had a mega flare. The inflammation can be happening but not severely enough to block blood flow - just as can happen in heart disease until a point where suddenly a blood vessel is occluded.
Serrapeptase has been mentioned before - no idea off the top of my head what was decided then. There are few clinical studies although it has been used as an "antiphlogistic" in Germany in the past. I believe it was to be banned - why I'm not sure. Livestrong seems to think it has few side effects so might be worth a whirl. On the other hand - without proper studies you might not know about side effects. It isn't to be used if you are on warfarin or anything like that. Everything sounds good when you read reviews from sites who are making money out of selling you something. I tend to disbelieve stuff when they claim it cures 90 different illnesses - cynical or not.
Hi David, it's great that your doing research and trying to find some commonality in this PMR nightmare, having said that I am grateful that it is PMR and nothing that is terminal. It's good to put every idea out there. There are people more experienced than myself. I am only a newbie. Hang on in there and someone will reply in a while. Pat
Thanks Eileen, I am going to wait and hear from a few more people, and if no on seems to have tried the Serrapeptase then I might experiment and I will let everyone know how it goes. Also my pain does not seem to be the actual muscles, it seems to me it might be the sheaths or connective tissues surrounding the muscles and tendons. I have stayed on 7 mgs but have had to do a lot of snow rtemoval the last couple of weeks here in Maine. We have received one snow storm after the other and it has taken me so long to get to 7 I am going to try and ride out the storm, so to speak. I know that exertion makes the condition worse, but thats my decision for now. Wish me luck and I will keep in touch every so often. I am not on the computer much, but I can't tell you how great it has been to be on this forum.
Hi david, yes wouldn't it just be great to find the common denominator, but that initself means almost finding how it's caused, and then once we find that out, how great would if soon after they found a cure!
i refer to Eileen's account of how this condition developed in her. An elderly lady from church was most interested to know what I'd been diagnosed with in December 2013 because she thought that I had what she had some years previously. Some 5 years ago she was diagnosed with PMR but never had any treament? She had pains in her neck, shoulders, hips, bottom, thighs, and arms but the pain never crippled her so she was never given any medication. She said that in total it took about 2.5 years before the pain eventually went away. Christina
We probably would be shocked if we knew how many people have this condition and have not been diagnosed.
I imagine PMR is what my grandfather and a great aunt had but was dismissed as "rheumatics" in the 1950s and 60s. It was identified and described as a syndrome a long time ago (by a doctor called William Bruce in Dingwall in Scotland in 1888) and given the delightful name of senile rheumatic gout. Google it and you can read the original paper.
It starts:
"There is, perhaps, no disease as to which professional opinion differs more than as to rheumatic gout."
Nothing new there then ;-)
Not only how many there are - but also the ages. I doubt many patients who have it who are under 50 ever get a diagnosis - so they don't join the statistics. I have started asking younger patients to persuade their doctors to write a publication even if it is just a letter to a medical journal.
I was talking to a lady at the swimming pool the other day who said she had had PMR and had gone to an alternative pain relief place and had never taken steroids. She said there were several young people at the pain relief place some in their twenties and thirties who also had PMR. I was very sceptible but she was adamant. Perhaps that is what happens to young people with PMR they seek out alternative medicine as the medical profession do not believe they have PMR as they are under 50!
I had PMR for 5 years without pred. I was not diagnosed because although I was over 50 I was "too young" and my bloods were "normal".
That 5 years wasn't horrendous - I survived using aqua aerobics, the steam room and patience. It wasn't nice but it wasn't unbearable, I adjusted to live with it. A lot - as I realised when it went absolutely pear-shaped and I was finally trialled on pred. How much damage was done in that 5 years with rampant inflammation in my body I may never know. It has almost certainly left me with cardiac damage that causes atrial fibrillation and I need medication for that. Alternative pain relief is one thing - the chronic inflammation is another.
The lady at the swimming pool says she is OK now as far as PMR is concerned, but she wears a funny hat, hand flippers and a snorkel when she swims for some other problem she now has.
There has been an International Survey running for about 6 years now.
You can find the link by visiting pmr gca northeast website .
It is run by Elliot Green an American.
Hi David. I developed PMR a few weeks after having my first ever flu shot, followed by an anti-pneumonia jab which was recommended I have. I am sure it was triggered by one or both of these vaccinations. A year later I had my second flu shot and promptly had a PMR flare. That makes me even more certain. Angela.
David:
I had a very bad mouth infection from the dentist cleaning. It started 24 hours after the cleaning on a Thursday, By Monday I was in bad shape and took 3 weeks on meds to be able to open my mouth. 2 weeks after it seemed healed, I had PMR. Severe trauma I was told by 2 Drs. and that was it. If this helps. This was 1 1/2 ago and still they can't my numbers down
I agree Eileen. I am convinced that my Father who died 8 years ago at the age of almost 99 had PMR for years - though he was only ever treated for Arthritis. I too have had it for years, and it was only after the really bad flare up at the beginning of this year, that they have started me on Pred. I am SO much better! I still have pains, but no where near as bad as they were, and the stiffness has gone. So my GP has decided I must start reducing already. I tried to tell him that I have only been on `15mg for 4 weeks, but he expects me to reduce, and be down to 8mg in less than 2 months. I really can't see that happening..... so watch this space!
Why does your GP want you to reduce Prednisolone? You are just going to end up with a bad flare up. I personally wouldn't do it. Down to 8mg in less than 2 months!... I am hoping to reach 10mg in a year and I will be pleased if I make it. Then I plan to stay on 10mg for several months if I can.
I agree totally with sheila. Do not reduce!!! 15 for 6 weeks, 12.5 for 6 weeks, 10 for anything up to a year, then the very slow reduction. I was on 10 for 6 months, then 9 for 6 weeks then suffered a flare up attempting 8. I put myself back up to 10 for 6 weeks, now I'm doing half measures all the way. Presently I'm on 9.5. My GP is very good and helps me a lot. I've worked out that if I can get through this without another flare up I'll still be on prednisone albeit 1 mg in dec 2016. Do not reduce too quickly. My flare up put me back by 3 months, it's not worth it. If you feel your Dr is pushing you pretend you had a cold or anything as reduction when Ill is never advised. Also print off a copy of the Bristol PMR plan and give it to him because it sounds as if he needs to understand this condition better. Regards christina
Follow the link
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Using the first link in it you will find the PMRGCAUK northeast website. At the left hand side you will see a blue box and I think it is the third link down there is medical Information. That will take you to the guidelines from the BSR. The next to last link is to a paper aimed at GPs from one of the top PMR people with their approach - and they take 17 months to get to 8mg from 15mg. It achieves a 1 in 5 rate of flare instead of 3 in 5 rate of flare.
The final link has links to both those as well as another review article by top PMR researchers, Dr Sarah Mackie and Prof Christian Mallen, writing about PMR and GCA with quite clear opinions about tapering over months and YEARS.
Print the last two papers out and take them to your GP and ask if he is arguing with the people who probably know more about PMR and GCA than most others in the UK. If he is so arrogant then find another GP.
Thank you, I will check it out.
Thanks, I am starting to receive several responses that have some kind of puncture, to early yet to see if there is a correlation.