PMR without prednisone

And again even with cannabis and or marijuana, it is not a 1 drug fits all pain relief. There are some pains that the drug proves ineffective at controlling and both the substances contain no anti inflammatory components. However, having said all that wouldn't it just be so great if another medication was developed that caused fewer side effects than preds, not just for PMR/GCA sufferers but for all people prescribed preds. Regards, christina 

I don't know if cannabis would necessarily work - it would possibly work in fibro since that is a form of nerve pain and it is nerve pain that responds to cannabis according to some research. You certainly won't get to use it in the UK!

I guess I felt the signs of the PMR coming back but thought it was just a matter of time before it would go into remission completely.  I was ignorant of the facts and, having now learned so much from you and the others, I realize that fighting the mild pain is ignoring the bigger picture.  There is obviously low lying inflamation and with the recent flare up in my wrists, I now know that I must go back on prednisone (particularly if I want to avoid major problems like blindness).  I was only giving thought to cannabis to help with the joint pain I was experiencing but knowing more now that really isn't a viable consideration.  

I am happy to say that I was successful in getting an appointment tomorrow with my opthamologist due to a cancellation and I hope that he will assure me that everything is okay for now...until I can get on prednisone again.  

I may have to wait for an appointment with my rheumy again and, as you say Eileen, I do not have a lot of confidence in her but this time I am prepared to challenge her (nicely, mind you, because she like some others is egotistical).  I am hoping that I can start on a lower dose than I did originally but we shall see.  

My fear is that I not only have I PMR but that it might now be GCA as well. The day following the flare up with both thumbs, I could feel the "sore spot" and see it between two veins (or possibly between two branches of the same vein).

We have yet to determine what is causing the weird feeling in my head but I strongly suspect that it is caused as well by PMR and/or GCA.  It is the uncertainty of the disease, the lack of knowledge in the medical profession and the unwillingness of the professionals to listen and realize their limitations due to lack of first-hand experience, that frustrates me!  I am still waiting for a call from the neurologist's office but maybe with the tests that she orders, we can get to the bottom of this.  

Eileen, you raised a number of valid points in your previous response and I want to go back and re-read them.  My hip which is becoming excruciatingly more painful (getting into and out of the car) will probably need to be addressed soon as well.  I know that I need to strengthen my legs first though (with exercises) in order to support myself after surgery.  I was fearful of having more pain due to PMR but, as you say, surgery appeared to help the lady you knew.

I would be grateful to hear from anyone out there that has had surgery or knows of someone who has during their journey with PMR.  It could be reassuring or otherwise to hear of your experiences with respect to pain tolerance.  

Although fearful of what lies ahead, I am determined to take my health into my own hands.  Thanks to everyone in this forum for their personal advice and shared experiences!  

     Hope you will reply. 

     I've been told that, yes, one must discontinue prednisone prior to surgery as it increases risk of infection. And yes, it is likely that it will be harder to manage pain post surgery due to the abnormal increase in inflammation which accompanies all surgery. With luck the side effects will be minimal.

     If you're having surgery on legs -- try to do isometrics and hand weights to strengthen your upper body. You'll want to be stronger if you have been bedbound for awhile as I have. Working on your core (abdomen) may not be so difficult and will pay dividends. 

​There are a few ladies on the forums who HAVE had their hip replacements done while still on various doses of pred - anything up to 10mg that I know of - and who have had successful surgery and good recoveries. They also found they were able to reduce their pred post-op - as of the hip pain was feeding the PMR.

If you are being told you must stop pred for surgery - you need to shop around for another surgeon. 

I also was able to use the alternative approaches for the first 5 years because the PMR wasn't too bad once I got up and got going. But then it hit me like a ton of bricks and those approaches were impossible. There comes a point where where there is a switch between "can I manage with this pain" and "I can't manage any more". And if it progresses to full blown GCA then you have a rather stark choice anyway: take pred or risk losing your sight, irreversibly, permanently. If the vision in one eye goes, the other usually follows within a few weeks, sometimes even despite very high dose steroids.