CANT DECREASE BELOW 10 MG NEED ADVICE

I think avoiding wheat means I have less problems than I might - but it didn't made the PMR go away altogether even though I ate gluten-free for some years. But low carbs, especially processed ones, is a really good approach.

Thanx for the advice and for making me feel that I not alone in this battle.

When I was first diagnosed I eliminated all gluten, diary, sugar & alcohol. There was no difference in my pain or stiffness. I did lose some weight and avoided the moon face side effect of the pred so that was a benefit.

Some people have gluten sensitivities and elimnation is beneficial. Unfortunately, it didnt work for me, glad it worked for yiu.

Hi Everyone. Good site!!

My initial rheumatologist moved after my second visit and I have just completed my follow-up visit with a replacement. The new one informed my GP that I only most likely had PMR. It took over 12 months for initial diagnosis after one GP recommended exercise and a second located and treated kidney stones, requiring 2 separate surgeries, and an L4 fracture. Conditions following 6 weeks of inaction for the L4 of back, hand, glute hip and knee pain led to PMR diagnosis. 15mgs of Prednisolone or Prednisone have come down to 4mg now. I have some osteo problems in most of the joints affected. I still have some minor pain in these places and am unsure if my medication level is achieving its task. I read a case where prostate surgery or its cancer was suspected as being a cause of the PMR involved in some cases. I know this cannot be the absolute origin for this complaint but am wary of immune system treatment when the system itself is the body’s only natural cancer combatant. The age of PMR sufferers generally makes diagnosis and treatment difficult as this is also the age of other similar conditions. There doesn’t appear to be much reference in these posts of the two blood markers CRP and ESR and their changes over treatment and flare-ups?? PMR needs a lot more research and data collection to establish cause and treatment options.

Barrie Heslop

There may not be much discussion of ESR/CRP in these particular posts - but there is plenty elsewhere. We don't discuss the same things in every thread - even if sometimes the same things do crop up.

As for prostate ca - how would you reconcile that with the fact some 3 times as many women as men develop PMR? The stress of surgery in general may be the tipping point for some case, though by no means all, but PC in particular - I htink not.

Yes EileenH

I agree a specific cancer itself may not be relevant but I only had these 2 cases to go on. Complications following surgery was said to involve the body shutting down organs etc.to diminish loss on belief it was being attacked with knives. The immune system itself is involved in this and part of it’s function is to fight against cancer. It does this through changing blood components. I was concerned I was being treated for something they were not sure I had and if I did where it came from. Did proposed treatment herald some other risk?. PMR like many complaints and their treatments need so much more data collection that no one is attempting. They need to know where PMR stems from before radical treatment coupled with so many other “we don’t knows”. I recently declined a GP recommendation for a 7th medication. Many are on more. My current 6 have so many “side effects” no one can be certain of their collective damage let alone when combined with the ones come off and the supplements we feel we need to add. There’s nothing worse than learning afterwards the medication you didn’t really have to take may have destroyed the quality of your life!!! (BPH>Dutasteride>PCa & ongoing incontinence+) Barrie Heslop

Sorry - I can't see your post, just the first few words. Another bug??

Just in time for the weekend ...

Does this help? Barrie's post:

Yes EileenH

I agree a specific cancer itself may not be relevant but I only had these 2 cases to go on. Complications following surgery was said to involve the body shutting down organs etc.to diminish loss on belief it was being attacked with knives. The immune system itself is involved in this and part of it’s function is to fight against cancer. It does this through changing blood components. I was concerned I was being treated for something they were not sure I had and if I did where it came from. Did proposed treatment herald some other risk?. PMR like many complaints and their treatments need so much more data collection that no one is attempting. They need to know where PMR stems from before radical treatment coupled with so many other “we don’t knows”. I recently declined a GP recommendation for a 7th medication. Many are on more. My current 6 have so many “side effects” no one can be certain of their collective damage let alone when combined with the ones come off and the supplements we feel we need to add. There’s nothing worse than learning afterwards the medication you didn’t really have to take may have destroyed the quality of your life!!! (BPH>Dutasteride>PCa & ongoing incontinence+) Barrie HeslopYes

Thanks ptolemy - you could see it ok then? Wonder what does it...

I don't know - but I do know I will resist addition of innumerable medications I think I can do without.

But also, we frequently discuss triggers - and it is generally accepted that anything that stresses the immune system can contribute to it going haywire. It's a pile of straws and eventually something breaks the camel's back. For you it may have been surgery - it certainly wasn't for me. Nor the flu jab. Or a lot of other things that are frequently blamed.

It isn't so much the individual trigger that matters. It is the mechanism that is triggered - and there is work going on about that.

I agree that the layering of immunosuppressant medication is concerning - and I have written about that before as a result of a long discussion with an immunologist at a meeting this summer. It will come round eventually.

You do have to bear in mind though that your medical system encourages this multiple level approach - they get more money as a result. At least state-funded systems look to reduce the amount of unnecessary medical/surgical treatment - problems arise when there is a component of private medicine involved and that has been identified in Germany.

I just use magic!

I couldn't work it out then realised that letters had moved to other lines. Oh the joy of changing something that worked.

No - I can't see beyond about "... not be relevant ..." - nothing I can change as far as I can see!

I’ll try again.. Possibly the problem is it’s coming from ”down under” I was lucky, 72 years without major issue then Wham. I was so concerned to discover a possibility a drug I could have done without MAY have caused my cancer and all the other associated issues linked or possibly linked since. Drugs are trialed pretty thoroughly pre release but not much data collection, evaluation or research is done afterwards unless something very severe becomes very obvious. The 5ARI component of my Duodart trialed extensively. Small numerical differences suggested it either reduced the risk of low grade cancer or increased the risk of high grade but these were basically ignored. Post release our Health Department’s Database of Adverse Event Notifications at my last look had 6 Duodart Prostate Cancer events. These all or mostly advised by the drug company without specific cancer levels. The number of users and their likelihood of being cancer victims suggests this should be in the thousands even if the drug was not complicit. So obviously very few adversities reach this worldwide linked database. When we peruse the internet we find so many “we don’t knows” that wouldn’t be there if our governments were collecting more of the evidence readily out there.

My Toyota has had two recalls. One for dangerous air bags the other exploding fuel when the tank was full. How many worldwide incidents did it take before the numbers tweeked without someone specifically looking. These vehicles were hopefully extensively tested pre-release. We need to do better with accumulating all the facts about our health complaints and treatment that’s just lying around there. Barrie Heslop

You could blame doctors to some extent - all countries have a post-market launch system in place to report adverse events to establish the real incidence of any found at clinical trial and any new ones. I don't know what it is in Oz, in the UK it is the yellow card reporting system. But I know of doctors who do not report adverse events that are listed on the data sheet, saying "but we know..." However - have you reported your suspicions? Patients are also encouraged to participate in most countries.

Prostate Ca is fairly common, the incidence rising with age. My husband has had PC, never had any previous prostate problem until it was seen his PSA was slightly raised at the post-65 screening done here. Developing PC is a common event - exploding fuel tanks are not. An increase in incidence of PC with a single drug will require a long study period to identify clearly.

I could see the words, Eileen, but it was liking reading a code.....an easy one, I may say!!

Hi all,

Yes this is a known bug that I reported a while ago. The issue is if spaces are put at the start of a post although I have no idea why this should cause the cut off/different format of posts and only affect some browsers. I have edited the post so it should now display for all. If anyone sees this again Report the post and I will correct.

Alan