Still Unsure | Arthritis Information

Hello, everyone. Several weeks ago I made my first post with the subject, "Do I have PMR?" I seeme to have many of the classic symptoms (and then some), but had not yet been diagnosed with anything.. My doctor had me undego many tests over the summer, but everything was coming up negative. My seds test scored only 6. More recently it has gone up to 26, which I know is still low. I also understand that one can have PMR and it might not show on the seds test. My doctor finally decided to put me on prednisone last week. I started out with 60 mg. for two days, then 50 for two days, followed by 40 for two days, and now in the second week she has told me to stay on it at 30 mg for the week. after which we will begin lowering it again.

I have had no dramatic results. No miracles! As has always been the case the severity of my pain fluctuates from dat to day and even during the course of one day. I wonder if this is typical for some of the readers of the post?

This is my tenth day on prednisone. Has anyone out there been on prednisone for that long without results? My doctor has also suggested that I may have fibromyalgia. I know I'm not the first to say this, but such uncertainty while in pain, discomfort and fatigue is really rather dispiriting. So far I've been able to ward off depression, but every day I feel I'm on the precipice of it and trying not to fall off the cliff into the void. Any suggestions or comments about this? Is anyone on an anti-depressant because of the PMR! Depression as a result of the conditon, that is. Do you find being on the anti-depressant helpful in any way?

Well, thanks for taking the time to read this. Just ventilating helps and certainly any comments, information, or suggestions will be most welcome. In the meantime, I wish you all the best.

Hugh

Hi Sean,

I don't have any answers for you, but i can tell you my situation with pred, it seemed to work when i was first diagnosed and started to take it, but now it is not working, i do not know how i would feel without it, i am trying to taper off at this point am at 18 mg.
Still feel terrible every day, in a lot of pain and extreme fatigue.This is a complex disease and hard to figure out.
hope you find some relief
Georgiana

Hugh, I'd wonder about the diagnosis of PMR, since it appears that rheumys apply prednisone and if the symptoms reduce markedly in a day or three, they say it's proof of PMR. With that high a dose, I'd think you would see a marked change; I think a lot of us started with around 15 to 20 mg and noted the quick relief that points to PMR.

Hope you can get some help with feeling down like you do. Hang in there.

Hugh, Forgot to suggest that you click on the heading at the top of the page "Arthritis Forum/Message Boards, and then go down the list to the bottom and try the fibromyalgia forum. They may be able to offer help. I hope so.Hugh,
I am sorry you are still in pain. I know that precipice you are hanging out on;
constant pain and no answers make the look over the cliff very long indeed!

The lack of response to prednisone does seem to contradict a PMR
diagnosis. I hope you find the right answer soon - Feel Better.
pgr

So sorry to hear pred is not working. I do think you might not have PMR especially on that high a dose you should have felt relief immediately (took me a few hours ..I felt so incredibly fine I thought i was cured!)

Like Bob suggested ....go to the fibro board and see if you can relate their pain to yours.

marianne195239365.3108217593

Hi Hugh, I was diagnosed in March 2006 after 5 months of hell! Wont go into that now except to say it was around 3 weeks before I felt the pred was starting bring relief.

Because I was told it would work immediately I was feeling so desperate, my very high sed rate had not gone down and my family made arrangements to get a 2nd opinion. This happened in the 4th week. I was still feeling dreadful but the pain was tolerable. This very nice Rheumy talked to me for ages, explaining PMR, said he would have started Pred a whole lot higher ( I was on 10mg) and reasurred me that a lot of people with any disease can react different to the statitisics.

Hugh I dont know if you have PMR but you certainly have something! I can understand your frustration and depression... why would you not be... pain, pain, fatigue and worry.. ' what do I have? just give it a name and I will deal with it!!! Yep I do remember those days, months and all the tests ect. Chronic lympathatic leucemia was the scariest and yep did the bone marrow biopsy thing as well! White cell count was very high as well.

Give the pred a chance Hugh, your body may just not fit into the norm of whats surposed to happen too!

Hugh,

I remember reading back when in a couple of PMR articles on-line, that if one doesn't feel marked relief within two weeks of prednisone (tho' it didn't specify the dose - yours seems to be pretty high), then the diagnosis is most likely NOT PMR. Most other sources say relief should be felt within 1-4 days. Fibromyalgia and PMR have a lot of the same symptoms, except that the sed rate is usually not elevated with fibro. I had told one of my earlier rheumies that if I'd had to pick an arthritic disease to have, I would have picked PMR, as it is supposed to have a self-limiting course and not do damage to the joints. She teased, and said, "Oh, so you chose to have PMR?" Heavens, no!!! I wouldn't pick any of them, but that seemed to be the least offensive to me at the time. I do hope you don't have fibro. That is harder to treat. We have a good teaching hospital here, and the leading fibro. researcher in the nation (now retired from practice, but still doing research) has a fibro clinic. I almost got to go to it- got as far as filling out the questionnaire and then into the examining room- but then they decided I didn't have fibro, and sent me over to rheumatology. Anyway, I sure hope you get some answers soon.

I take 50 mg trazodone to help me sleep at night, not for depression, tho' it is an anti-depressant. If you are having issues with depression,( and who wouldn't considering the pain and frustration associated with diseases like ours?), please ask your dr. about at least trying an antidepressant, or maybe a sleep aid? I used to tell my PCP that if I could just get a handle on the sleep issue, that would solve a LOT of my problems. When you're in pain, you can't sleep. When you can't sleep, you're in more pain, and everything else goes to pot, too.

Keeping you in my prayers.
Bless you,
Reni

Fibro study

http://www.medicalmoment.org/_content/healthupdates/sep03/16 5423.asp

It just seems if you PMR, the prednisone would be working for you. When I was diagnosed, my rhumy gave me 20 mg a day. I got the prescription filled before I left that town for my home 125 miles away. Within two hours I could feel the difference and the next day my arms had quit hurting and my knees had less pain. My back still hurt for a week, but that eventually calmed down to be the way it was before PMR reared its ugly head.

I posted this site some time ago and they gave one example of something that was like PMR. You might want to read it and other articles on the site and ask your doctor what over condition you have. After all the reading I have done and all the other comments on this site, it is difficult to see why your doctor is sticking to that diagnosis.

I do hope you find an answer and aren't in as much pain today as you usually are. Mary

http://www.arthritis.org/polymyalgia-rheumatica-misdiagnosis .php

I got releif within a day of taking pred. I started out on 10mg in April of this year and now down to 5mg a day. Like I have said in other post, I gave up sugar and what a difference it has made in how I feel.

I sure hope they figure out what is wrong with you soon so you can get some releif. Keep us posted and don't give up.

Hugh, Sorry to hear you're not feeling much better. One of the hallmarks of PMR is a quick and positive response to prednisone. When I started prednisone last June I felt nearly 100% after about 72 hours. Since then, along with dosing changes, I have gone up and down and still am not feeling my best either. Has your doctor done a C-Reactive protein test along with a sed rate? If not, ask for it. This test should be done in conjunction with the sed rate. Keep us posted on your progress. We're listening! DebiA [QUOTE=Sean]

Well, thanks for taking the time to read this. Just ventilating helps and certainly any comments, information, or suggestions will be most welcome. In the meantime, I wish you all the best.

Hugh