Early Diagnosis vs late on outcome
Posted , 13 users are following.
I have seen so many cases on here of people who were not diagnosed or misdiagnosed and had to wait months or years to get correct diagnoses and proper medication. So far I have been very lucky. I do not want to jinx myself here. I was diagnosed in early May. I have been pain free for several weeks and am down to 10 mg prednisone and my weekly methotrexate. I may end up having flares when I further reduce in two weeks. I will let everyone know then if I do. Here is my questions???? If a person has been diagnosed early on, has the recovery been much quicker with fewer flares than those who have just gone through hell getting to a correct diagnosis??? Thanks, Donna
1 like, 50 replies
faye______00403 donna60512
Posted
I got a quick diagnosis. Complained of pain in various area and doc watched
me try and get up out of a chair and did sed rate and it was 92.....for a year
I reduced and didn't have any problems. I was down to 4mg from 20mg
and had an unfortunate bout with sciatica, I was down in bed for about
two weeks barely able to move. Intense pain. When i was back up and
moving sed rate had gone to 60. Have had a terrible time reducing from
20mg....I have no idea why the second time around has been so difficult.
I'm still at 20 and having pain. Markers are normal. I debate everyday
about going up to 25mg but hate to go so high....I guess I need to go in
and talk to doc....
jeanne333 faye______00403
Posted
I didn't complain when I first started having pain as I knew I had gout (real bad case)) and arthritis. I final talked to my doctor sent to an RA for PMR. Reduced from 20mg pred to 7mg pred and then a big flare hit. I've been trying to get down below 20mg pred since before Christmas. I'm now at 19mg pred and hoping to go to 18 in 2 weeks (that will be 8 week mark) It isn't looking good, as I'm still having pain and stiffness. I'm like you, probably should just go back up to 20mg predict and stay there. I can't take some of the other meds they put us on, as I had very bad side effects.
donna60512 faye______00403
Posted
Oh, my goodness, that is too bad. Sciatica can be really horrible. I was saying that I didn't want to jinx myself since all is going well now. My rheumatologist keeps saying that with the methotrexate I should be okay, but just don't know. Good luck, I hope you can get down very soon. Donna
faye______00403 jeanne333
Posted
I'm going to give 20mg a couple of more days and then going to increase
at least to 23mg, my doc told me once I could increase as high as 5mg but
no higher.....I'd just like to know for sure pain is PMR related
since I have some arthritis and low back issues. Pretty sure the burning
pain i feel in both shoulders is PMR. ...I'm afraid it will just get more out of contol if I don't do something.. What's the point of taking pred
if we don't take enough to control the pain?
diana21296 donna60512
Posted
donna60512 diana21296
Posted
jeanne333 donna60512
Posted
I didn't complain when I first started having pain as I knew I had gout (real bad case)) and arthritis. I final talked to my doctor sent to an RA for PMR. Reduced from 20mg pred to 7mg pred and then a big flare hit. I've been trying to get down below 20mg pred since before Christmas. I'm now at 19mg pred and hoping to go to 18 in 2 weeks (that will be 8 week mark) It isn't looking good, as I'm still having pain and stiffness. I'm like you, probably should just go back up to 20mg predict and stay there. I can't take some of the other meds they put us on, as I had very bad side effects.
Anhaga donna60512
Posted
It took between 13 and 14 months for me to be diagnosed. I started pred last June, 15 mg. Am now, since mid July, down to 3 mg. I felt return of pain around 9 mg, but I discovered the dead slow plan then and have used it ever since, with my own variations and no problems.
I could be wrong, but my feeling is that unless untreated PMR has led to further health issues through inability to exercise, for example, the length of time before diagnosis really has no effect on how long the disease may last after treatment commences. We do know, of course, that untreated PMR inflammation can sometimes develop into GCA, but I think that's a different issue.
donna60512 Anhaga
Posted
Anhaga donna60512
Posted
There's been some discussion about low dose naltrexone for PMR. Have you read anything about that?
donna60512 Anhaga
Posted
donna60512 Anhaga
Posted
Yikes, just looked that one up and doesn't sound like anything I would want to try.
Anhaga donna60512
Posted
I didn't look up side effects or anything. But if you look up prednisone, you'd never want to take that either. I'll see if I can find where I saw it discussed and get back to you, but maybe not tonight!
Anhaga
Posted
Well, that was easy
https://patient.info/forums/discuss/improvement-with-low-dose-naltroxone-528656
donna60512 Anhaga
Posted
I know, the only reason I take the prednisone is that from what I understand it is the only thing that really works in the begining. I just want to get off of it sas soon as possible, that is why I went with the methotrexate. I just keep seeing how many people refused to take the methotrexarte in the first place. I just decided to go with it and so far so good. I prefer not to look up all of the side effects of anything. I don't want to be influenced by all of those things. I am doing the holistic things like taking turmeric and other suppletments, eating right, and trying to get in as much walking as I can.