Question

Thanks for your response... Christiine I've been feeling pretty good.  No hip symptoms, off and on shoulder achy and teeth achy but today I feel hips, shoulders teeth,neck and overall lousy.......just call MD requesting blood work which I haven't had in months... When first dx'end with PMR they were hesitant to say it was PMR because blood work did not confirm PMR but I had all the physical symptoms.  Waiting for call back....thanks

Hi judy, 1 in 5 patients blood tests do not reveal raised ESR/CRP levels, so diagnosis relies on symptoms and response to preds. You're down to 2mgs so I assume preds gave greatly elevated your PMR symptoms. How long have you had PMR for? Regards, christina 

Christina

PMR since August 2014.... I decided to take another 2mg this afternoon. ... So total of 4 mg today.  Since the beginning I've been pretty much on my own ... Rheum.  Gave up and said I should go to a neurologist...or return to my primary.  My primary really didn't say how much Pred. I should take. I told her... Started with 4 then went up to 8 and then down to 4 and then 2.  Didn't really know about reducing until I found this forum...

Hello judy, thank heavens you found the forum. I can't believe you've been left to work out all this tapering for yourself, hence the fairly rapid reduction to 2mgs in less than a year. I was on 15mgs for 6 weeks, 12.5 for 6 weeks, 10mgs for 6 months, then it's on to Eileen's go slow and almost stop regime. I follow this regime but only ever reduce by .5. Hopefully your upped dose will help. If it does stay on this dose for at least 6 weeks, then reduce by .5 next reduction. All the best, christina

Hi Christina ,  thanks again for your response... From the beginning of all this I had the feeling that my primary didn't believe me either...  I have downloaded the go slow for reducing.  I'm going back up to 4 mg .  I was so upset about the side effects that my primary kept talking about  and because I didn't want to be on Pred. I went too fast.  Just saw her last  week and she again mentioned side effects ie osteoporosis, diabetes...  I'm really upset...

Judy, we are all worried about the possible side effects but it's the chance we have to take because it was only until recently that I found out that rampant inflamation in the body is equally dangerous. Judy, we have to live for the here and now, I would rather be pain free and have a decent quality of life than to worry about what may happen in the future. Don't be upset, your Dr is being very mean to worry you so. I never understand Drs, they'll prescribe some drugs willy nilly that are potentially as bad for us as preds are, but they shy away from prescribing a drug that gives us back our life, most odd!! All the best, christina 

I hear you Christina, thanks so much. I took 2 more mg several hours ago and I feel a bit better. Tomorrow I'm going to start taking 4 again. Maybe I've overstepped myself by sending research articles to my Primary and to the Rheum. Who dismissed my symptoms because my blood work did'nt confirm Dx.

Tomorrow I'm going for blood work. Stupid me but I'm hoping it's bad so they believe me! Thanks again so much. All the best, Christina

Hi judy, do let us know how you get on. Remember not every sufferer has raised blood results, but I do understand your reasoning behind wishing yours return raised. Eileen, one of our guru's has also never had a raised blood result, but she has had PMR for about 10 years, and how did the clinicians confirm her diagnosis? By looking at her symptoms, and then looking at the response to those symptoms when prescribed prednisolone. Then judy I think you need to establish a more controlled dosage programme that sees you on the dose of preds that sees maximum relief then reducing every 6 weeks following Eileen's go slow and almost stop reduction method that many of us are using very successfully. Good luck, christina 

Thanks so much for your response, MrsO,

  I decided to take 2more mgs and I feel a bit better.  As i've been telling Christina, I probably reduced too quickly. So I'm going back up to 4mg and see how I feel tomorrow.  Plus I'm going for blood work, which I requested. 

Grateful for everyones help and concern

Thanks, Eileen,  I've gone back to 4 for now ( this morning).  Went for blood work this morning.  Yesterday I was really feeling terrible.  When I came home after blood work I fell asleep for a couple of hours.  

Probably won't get lab results until next week. I've been trying too hard to be "cured".   Am I a fool?  Just stupid...I feel like I'm on my own thru all this!  Depending how I feel tonight I may take more Pred.  

Thanks, I'm grateful for your response.

If it is PMR there is no cure - that's the bad news. Pred manages it pretty well and eventually PMR almost always goesi nto remission - that is the good news. 

Don't go too mad on the pred - take enough to feel better. You've obviously managed well on low doses until now, but you've gone just a bit too low. It'll be fine!

Yes I've been thinking about the lab work coming back "normal"...  Then as in the beginning I too wonder what's wrong with me??!   But I did have terrible pain ( which I tolerated ). In hips, shoulders , neck, low back and I made sure I tried to stretch and not lose my range of motion etc.

again,I'm grateful to be able to tell this and have someone hear me..  

One in five of us with PMR/GCA have "normal" blood tests - either because "our" normal is still within the acceptable range or because we just "don't mount the inflammatory response" as the medics put it. Trouble is, a lot of them don't appear to know about it!