Pred is for PMR and NSAIDs are for other types of pain. If you had been diagnosed with PMR a doctor would have given you pred. It is like you would not have been given cough medicine for PMR it is the wrong medicine.
Hi ptolemy
I guess we'll never know if NSAIDs would have worked since i wasn't given the option to try them initially. As i said they may have worked for me because they are anti-inflammatories, isn't that what PMR is an inflammatory disease. Certainly worked for shoulder bursitis which is inflammatory also and an integral part of PMR.
NSAIDs = Non-Steroidal Anti -Inflammotory Drugs.....
Hi Healingjan
I am reading the book. Audrey doesn't seem to be having much success with 15mg preds so far and has been on them for some weeks. She is starting to wish she had continued with NSAIDs which did help with her pain....i'l read on and see if preds do eventually help...4 years to go yet....
Yes, PMR is an inflammatory disease - but usually so much inflammation is caused that any NSAID effect is overwhelmed. They may work for very mild cases and possibly take the edge off the pain but I have yet to meet anyone who could tolerate the dose required for the years PMR lasts. NSAIDs of all sorts have potentially nasty effects of cardiovascular and renal systems.
Hi EileenH
You have to be very careful how you take them. My doctor who is male takes them and says if they are taken properly i.e. with lots of food not just a biscuit or piece of cake and worse with nothing at all then asking for trouble. I took my doctors advice and i am fine with them. This is a new doctor not the one who prescribed preds. Wish new doctor had been around two years ago.....
You are welcome to your opinion - but I have to pick you up on adrenal function.
It takes a couple of weeks at very high doses for adrenal function to be slowed but a couple of months at PMR doses. The effect is like your heating boiler not running the heating as long as the fire in the woodburner is warming the room: the body knows it doesn't need any more corticosteroid than is already present so it doesn't make more. It also has very little to do with your immune system except it is somewhat damping down the immune system activity that is attacking the body and causing the problem in the first place and mopping up the inflammation created. Other than PMR I have no immune system problems - I almost never get a cold or other infection. Given the long term side effects of NSAIDs on the cardiovascular, hepatic and renal systems I'll take my chances with moderate doses of pred - which work well.
I have been on pred for well over 8 years. My bone density had not changed significantly after 7 years, I have no signs of diabetes nor any of the other things so often alleged to be inevitable. I also use trigger point mobilisation therapies - it helps but for the add-ons, not the PMR. And on one of the forums we have had homeopathic practitioners who have told us they would not ever claim to be able to "cure" PMR though they can help minimise pred side effects. They all were taking pred themselves ...
For your stomach maybe - it's the other bits that worry me as well!
If 15mg isn't enough then 20mg or possibly more should be tried - to take into account the bioavailablity of pred. It can't be said not to work if it isn't used correctly!!!
Just sayin'
Hi EileenH
Never had a prob with stomach on NSAIDs, but did with pred. I have regular cardiovascular checks and kidney checks due to Type 2 diabetes. All fine. I think if you do use NSAIDs be sure to eat plenty when taking them and have regular CV and kidney checks...
We're looking at 10, 15, 20 years down the line. And I have had PMR for a long time ...
Hi EileenH
Yes granted!...but regular checks if taking NSAIDs would be the order of the day for those who do not have PMR for a long length of time. In your case and others who have been dealing with PMR for many, many years NSAIDs may not be appropriate. Any patient with GCA then pred is a must to preserve their eyesight..
The point i have been trying to make, I may not have been explaining myself properly but i am of the opinion, my opinion that is, and it seems of others, that PMR patients should be made aware of the adverse side effects of pred by their doctors or rheumys and be given the option of trying NSAIDs if 'they want to'. It's freedom of choice which we should be given. If NSAIDs do not regulate PMR pain for the patient, then try pred .
I just wish i had been given that choice. Maybe i would not have suffered, and it was sufference, with a multitude of side effects. I would rather have dealt with PMR pain. The memory of the side effects is first on my list that goes down in the anals of yuk memories.
I'm just being honest about 'MY' experience with pred. I am not trying to persuade or dissuade anyone from using pred or NSAIDs, it's an individual choice. I'm merely giving my experience albeit it is not everyones experience.....
Hi Healingjan
I noticed in the book that Audrey had surgery not long before the pain started. My pain started not long after i had surgery on my foot. Just wondering if surgery and anaesthetic which paralyses the muscles could be the cause of PMR.......it hasn't been verified..just a thought 🤔
But you do not know how long it will last. There is no way of predicting it at all.
Believe me, most doctors DO make a big thing about the possible side effects of pred and attempt to get the patient off pred quickly, often using NSAIDs. Most patients HAVE tried NSAIDs before ending up at the GP with PMR symptoms.
Hi EileenH
Granted you don't know how long it will last. I that case if it goes on longer than 2 years, and NSAIDs are not helping with the pain, or causing adverse effects,then go on to pred. It's trial an error what works for some doesn't work for others.
In my case i was determined to get off pred pain or no pain,.but that was MY modus operandi. It worked for me, not everyones choice. I suffered with a lot of withdrawal symptons buy hey! will soon be completely free of pain after my shoulder bursitis ops.....the bursers will be removed, but there is slight chance they could grow back but not necessarily swell and cause anymore pain..
I wont feel normal without pain, but hey! will work on it...😀🤗
There is a similar condition that occurs post-op but it manifests a bit differently and resolves differently too. It has been investigated, is not an inflammatory condition so not the same as PMR - and anyone with raised markers probably doesn't have it.
However - the trauma of surgery presents a considerable insult to the immune system and in some patients will be the final straw that breaks the camel's back and sends the immune system into freefall.
You have to remember that large numbers of PMR patients simply cannot function at all - I know people confined to bed, in a wheelchair, without pred. If you like being unable to toilet yourself, struggle to dress yourself and the like - you are welcome. Been there, done that - and I never want to go there again.
And however much you may dislike pred, leaving unmanaged inflammation rampaging through your body predisposes you to increased risks of arterial damage, peripheral arterial disease, cardiovascular disease and even some cancers. Pred does provide some protection against those.
Hi EileenH
I really do understand and agree all that you say. PMR can be horrendous for a lot of people. My pain was bad and i couldn't function properly with day to day tasks..it was horrible!😣 so was pred side effects! i had the worst of both worlds. I do feel for those patients especially the GCA patients. All i wish i could have just tried NSAIDs. I was looking forward to an active retirement travel etc., but PMR and pred side effects held me back for 2-3 years,but it's not too late i look ahead to after ny ops to brighter and better days doing the things planned in my retirement.
You sound ok to be still on pred, well that's ok if your happy, but do you ever wonder what would happen to your body if you were to taper off them now at this stage now your body has become so used to them over the years?...or perhaps you don't think of it and just carry on with your day to day life?
Thanks for the chats very enlightening. I hope maybe someday you will be pred free if that is your hope....👍
It isn't an option yet - the PMR is still very active and if I reduce the dose I get severe atrial fibrillation. But if I have to take a low dose of pred for the rest of my life that's fine. It is no different taking 7mg as a cortisol replacement therapy than taking thyroxine because your thyroid function is gone. With pred I can get on with life. Without it I can't. That's fine.
👍😊
Hi EileenH
It would be interesting to see, by way of a graph, if patients can recall, who developed PMR after surgery, after a viral infection i.e flu, stomach bug or after a bacterial infection i.e chest infection, pneumonia or any other type of bacterial infection, also a traumatic experience and stress, or those who recall nothing that occurred and went on to develop PMR and see what the graph yields🤔
It may, perhaps give a bit of an indication of what causes PMR. All the above involves the immune system, all but recalling nothing had taken place shortly prior to developing PMR......