Advice

Hi, I am 57 and, up until last year, have had good health. About this time last year, I noticed that I had lost a lot of strength, and that after about 4pm I would start to stiffen up, this got to the point where I could hardly move my hand from my mouse to my keyboard. These symptoms got worse, and got to the stage where I could hardly get out of bed in the morning, but things got better after a little exercise. My GP sent me for blood tests, thinking that I had PMR. However, the results showed that I had a kind of bone marrow cancer called Myeloma, I started treatment for this, and all my symptoms went away. Now that my treatment has stopped, I have started to get the same symptoms back, my GP originally thought that it might be Fibromyalgia, and suggested Pilates & swimming, but now he has referred me to a Rheumatologist. I have some Dexamethasone tablets left over and find that one 2mg tablet taken every three to four days relieves the pain enough for me to work, does this sound like PMR? It does from where I am sitting.

[SheffieldJane]

Hello Stowe, just a kindly observation here. Just what will it take to get you to start taking care of yourself? Blow work! Your body is sending you clear signals that it needs some tender loving care and attention. Never, never take a drug to force yourself to perform.

Apologies for going too far with a total stranger but you remind me of someone pretty close to home.

Please get yourself checked out and if at all possible take a sabbatical.

[PMRpro Ambassador]

Whether it is PMR or not - if that low a dose of dexamethasone works that well to relieve the symptoms I can't see how anyone could object!

However - I assume you have seen your specialist about this? Because as a very realistic person I have to mention the elephant in the room:

"Myeloma is a relapsing-remitting cancer. This means there are periods when the myeloma is causing symptoms and/or complications and needs to be treated, followed by periods of remission or plateau where the myeloma does not cause symptoms and does not require treatment."

It may have remitted - but it may also have now relapsed. Or, much more hopefully, has plateaued. But that is up to the professionals to assess.

[Hidden in reply to PMRpro]

Hi, thanks for the reply, the Myeloma is fine, it is monitored monthly, it just seems to be difficult to get a diagnosis for whatever is causing this pain/stiffness, people seem to think that I can just not work if things get bad, but that is not possible. I have a customer who has PMR, and his symptoms seem very similar to mine.

[PMRpro Ambassador in reply to Hidden]

Then in that case - as I say, if your symptoms are OK on that low a dose it's time to open negotiations with your GP.

But remember - just because the NUMBERS are acceptable, it doesn't mean the symptoms are.

[arvine]

i am curious about your diagnosis as well, as my rheumy has would not confirm pmr diagnosis that gp did last oct, because he did not do baseline bloodwork prior to starting me on prednisone, high dose 40mg, what type of blood work did you have done for dr to diagnose multiple myeloma, since being on prednisone since last oct , my wbc has been hi, and some other levels, as they tell me that is from the prednisone, i am still on this horrible drug as once started you must gradually reduce, i did have blood in urine when originally tested last sept, oct, and had cystoscopy, but found no tumor in bladder, all clear, since then more recent urinalysis, shows clear, no blood in urine, and gp tells me that happens, doesnt know why, so i am a little stressed about it all, as i have even told rheumy, when she can,t actually confirm what is going on with me, as well as my gp, several tests, ultrasound and exrays, on shoulder, pelvic area etc, with nothing showing up to explain the pain i started with, shoulder, buttocks, hamstrings etc, which now of course has improved since oct 2016