Have I really got PMR?

[zelma1915]

I am 78 years old and nothing I have taken will even touch the pain. I live in the southwest part of the USA. Being able to see a rheumatologist has been next to impossible. My doctor is in Internal Medicine and seems to know very little about PMR. I was started on 50mg prednisone but it hasn't helped this terrible pain. It feels like my low back and hips are in a vise or being gripped by shark. My energy level is zero. My head aches so bad but the GCA biopsy was negative. Has anyone had PMR and not been helped by trazadone? Thank you for any help you can give me.

[zelma1915]

I meant to prednisone.

[zelma1915 in reply to zelma1915]

I did have blood work that matched the level for PMR. That is why my doctor diagnosed it as PMR. Not being able to see a rheumatologist has been a big problem for me. The closest one is a five hour drive away and one of our children would have to drive us.

[piglette]

If the prednisone did not work at 50mg it is unlikely it is PMR. Normally 15-20mg dose acts like a miracle within days if not hours. Have you had any blood readings? Do you have tenderness on your head and jaw pain when eating, along with the headaches?

[Zacsmimi in reply to piglette]

I did not respond well to Prednisone, so my rheumy changed me to prenisolone and I had a dramatic improvement. He said my body didn't metabolize prednisone properly....

[DorsetLady PMRGCAuk volunteer]

As piglette says - if 50mg of Pred hasn't made any difference at all to your pains, then it's unlikely that it's PMR or GCA for that matter (a negative biopsy doesn't always mean you haven't got GCA).

Even if it's GCA, and if it is you may need a bigger dose, the majority of your pains should have decreased significantly.

Think you need more investigation, from either your doctor, or if necessary, the ER dept at hospital.

[PMRpro Ambassador]

If you have not had a response to 50mg of pred then it is very unlikely to be PMR and pretty unlikely to be GCA.

A raised ESR doesn't "match PMR"- all sorts of things will raise the ESR and it is only a single piece of the jigsaw. You need to find a doctor who knows a bit more - although a bit of googling on your doctor's part would provide them with some info.

rcpe.ac.uk/sites/default/fi...

would be a good start to improving their background knowledge.

[nickm001]

I dont know if you made typing mistake or not, but "trazadone" is used as antidepressant. If you suspect PMR, prednisone (turns into cortisol) is used to treat PMR pain and stiffness. Usual starting dose is 15-20mg, unless you have GCA, then it is much higher.

[Shastring]

Hello, I'm so sorry that nothing is helping you. I was diagnosed this past February and fortunately for me the prednisone has me totally pain free and my Rheumy told me that after all other meds failed and the pred worked that is a definite diagnostic tool in diagnosing the PMR. I am currently being tapered very slowly by 2nil every four weeks, just began this a few days ago and so far no flares.

If the prednisone has not helped at all it may be something else so I would definitely try and see a Rheumatologist if at all possible. I wish you good luck and hope you begin to feel better.

Sincerely,

Sharon

[Klah]

I am not a medical professional, but this does not sound like PMR. However, it sounds like you need a complete and thorough physical, to include BLOODWORK that might show the source of your pain. Best wishes to you...hope you can find relief.

[Gosingen]

I'm sorry you're in so much pain. I would agree with PMRpro that it sounds most unlikely you have PMR/GCA (I have both). It sounds like you need to have at CTscan or MRI of your LB and hips. Before I was diagnosed I had morphine to help with the pain, but once I was put on 20mg prednisolone the pain disappeared almost over night (btw I didn't have GCA then). I sure hope you get some help soon and blood tests if they havent yet been done would rule out a few things, if nothing else.

All the best to you.

[Doralouise77 in reply to Gosingen]

Hi Gosingen,

You mentioned that you were on morphine to help with the pain before you got on Prednisone. I'm curious - did the morphine do anything for the pain?

Thank you,

Cheers

[Gosingen in reply to Doralouise77]

Hi animi

No It didn't, but what it did do was allow me to sleep thus escaping the pain. It was in liquid form, and I only used it when absolutely necessary, I don't much like taking drugs, but obviously take what I have to. Hope this helps.

Best of luck again.

[Doralouise77 in reply to Gosingen]

Hi Gosingen,

Yes it does help actually, thank you.

Cheers

[987460]

Since 50mg of prednisone has not helped, of which that amount should have helped you. Have you been tested for Lymes disease, a lot of Lymes symptoms are similar to PMR.

[987460 in reply to 987460]

Prednisone does not help PMR, I know I was diagnosed with PMR, after blood came back I also tested positive for Lymes, which the doctor reduced pred to 10 mg from 20 mg hand I was put on antibiotics

[PMRpro Ambassador in reply to 987460]

Please don't disseminate incorrect info - prednisolone is the ONLY thing that helps PMR. It won't cure it no, but it is the only available option at present to manage the symptoms. If pred doesn't help then it is almost certainly something other than the PMR we discuss here. PMR is the name given to a constellation of symptoms that have an underlying cause - in this case an autoimmune vasculitis for which there are no tests and no other medication.

[987460 in reply to PMRpro]

Sorry, I meant to say if you have Lymes disease prednisone will not help it. Pred will help Pmr. Sorry but I am not giving false info. I know I have been on pred for one n antibiotics for lymes

[zelma1915]

Doesn't that come from ticks? I have never been where there are any.

[HeronNS in reply to zelma1915]

We never used to have the lyme disease carrying ticks in Nova Scotia. In the past few years it has developed into a significant health issue and ticks are becoming quite ubiquitous, even, I'm told, in long grass in built up areas, not just in the countryside. It's certainly worth pursuing this possibility if PMR diagnosis turns out to be wrong.

[PMRpro Ambassador in reply to zelma1915]

Zelma - do you have dogs? I know this is rather late to the party but a study has been published this week that showed that 1 in 3 pet dogs in the UK has ticks and the potential to pass on Lyme Disease. I seriously doubt it is significantly different in any other country!