Experiencing major flare tonight. Woke from my sleep with fever and rigours and hurt from head to toes. Anybody else experience this very often?
Is it a flare? Having PMR doesn't excuse you from catching the flu or a bad cold - or any other infection. I'd suggest checking with your doctor.
No obvious signs of flu just pain and unexplained fever.
Hi Kimberley
a few months ago I had similar symptoms and thought it was a flare. I went to My GP and diagnosis was a viral infection. So I agree with Eileen see your GP particularly if you have a fever.
cheers
Kathy
No Drs offices open here today. I've had this happen 3-4 times before pred and infections were ruled out. Tiss the season for flu however so I'll get Rheumy to assess me at Mon appointment.
Kimberly, before I was diagnosed with PMR I would have flares like that and it would send me to bed. Slight fever <101, and chills and pain throughout my body. My Rheumy said she never heard of that, now I know that's what it was. It was not the flu as it would pass within 24 hours. The last to leave would be my pain in the arms and shoulders
Yes Judy exactly. It's such a strange disease. I should not have decreased my pred when I know my GP hasn't got a clue about the treatment for PMR.
Hi Kimberly, yes I have experiened just what you describe, just the once though and I am on pred a full year. I was too ill and didn't have the energy to get showered or dressed to get to an appointment, so just had to ride it out until I felt able to get to see dr. It was some type of bug/virus I guess and it cleared up after 3 to 4 weeks. Good luck. Regards Pat
If this is same as I've previously had it usually clears itself within 24 hrs. Let's see if I feel so ill tomorrow, I hope not as I have to drive to Edmonton to see rheumy.
Could anyone describe a typical flare for me, please? Not sure whether my persistent headaches and neck pain are a flare?
There is no such thing as a "typical" flare. That is what makes it all so difficult - nothing is 100% typical and there are no really accurate tests. Even when someone is having a flare it is not always the same as when the disease started out. One way to explore which some doctors use is raising the pred dose again to where you were last fine or by, say, 5mg and see if it helps significantly.
If you are someone where the blood markers were raised originally then checking them at intervals is essential - particularly when you are reducing the dose. Often you still feel OK but underneath the markers are creeping up, possibly still within a "normal" range but higher than they were last time and the time before. That is a danger signal. On the other hand, a single raised ESR/CRP shouldn't trigger a kneejerk reaction of increasing the dose - unless it is accompanied by symptoms that are suggestive of a flare.
Thanks for your usual valuable insight.
Are you feeling better after your 24 hour flare? That is how it would affect me. Do you have any allergies, food or otherwise? I have a theory about our "flares". I have a gluten sensitivity and used to ignore it and eat things with gluten in it, thinking "so my nose runs and I cough a bit" not realizing that it was affecting my inflammation level in my body. I think that additional inflammation pushed me over the edge to my flare. Since I realized what was happening, I'm paying close attention to what I eat and have not had one of those flares that put me to bed for 24 hours.
Yes the fever has gone and the pain is not as bad. You could be right about allergies. Stress is a big factor for me as well. I lost a dear friend and coworker on Thursday at the ripe age of 52 to due to heart attack. I'm still in shock I think. Heading to see Rheumy now will update later.
UPDATE: Turns out my fever and chills are related to my PMR. Had levels checked yesterday and they are sky high again despite 20 mg of prednisone.Rheumatologist called to notify me and increased my dose to 50 mg and have levels rechecked on Monday. Said since I didn't respond to 20mg it's safe to say I have developed GCA. So concerned he gave me his personal cell number. So much for the Rheumy I saw in Sept who basically said I was too young at 49 to have PMR in the first place-GRRRRR. Thank God for my family and this forum cause I'd be in the nut house otherwise.
On another forum I have just answered a question from a 23 year old with typical GCA symptoms other than raised ESR/CRP but the doctors are saying can't be GCA because he is so young. He's had all sorts of procedures done - wisdom teeth out, sinus op etc etc. The only thing that has made a difference: a Medrol pack which relieved the pain after 3 days and it returned after he stopped taking it.
In my response I quoted this reference:
Giant-cell temporal arteritis in a 17-year-old maleIraklis I. Pipinos, MD, Russell Hopp, DO [correspondence] [email],
William D. Edwards, MD, Stanley J. Radio, MD
In 2006 they said that in the previous 30 years there had been 13 reports of GCA in under 40 year olds and they found this 17 year old. It isn't common - but it happens. They aren't looking for it so probably don't identify it. I had scalp pain, jaw claudication and double vision. They either disappeared or went at 15mg pred. There are a few people on the forums who it has been decided have GCA in the aorta, but only after them being sent for something called PET-CT - a CT scan with a chemical being injected that is taken up by inflamed tissue. It isn't done routinely because it is expensive - but I suspect if it were done far more often they would find a LOT of GCA in younger people.
Hi, this is for Eileen: just readin this thread with interest, and want to say that every slight withdrawal I've done since getting below 9 mg, has felt like a flare. I concluded from this emerging pattern that the withdrawal symptoms are like flares, but usually settle within a week.
However, I've been worried since starting pred, about lowered immunity to infections, to which my GP just laughed and said the steroids will kill the infection, don't worry. So I've had a permanent drippy nose since starting on pred. My question then is what's true about pred killing infections, or is it leaving people more vulnerable to bugs? Ps in my withdrawal weeks, the sweats and chills are usually worse.
Oh dear - where did THAT GP learn her pharmacology and bacteriology! Pred will deal with any inflammation - but not the infection that is causing it. What it will do is make any inflammation that comes with an infection less obvious and sometimes you might not even be aware of having an infection - the sore throat, bunged up chest and nose or the cystitis part of a UTI. That can also mean that an infection you are aware of seems quite mild when it isn't really. Any infection that lasts longer than usual or if you feel really unwell with it should be seen by a doctor, just in case. But no, the pred WON'T kill the bugs.
However, the sort of immunosuppression they are on about tends to be at much higher doses than you are on now Margaret and there isn't any need to worry too much. I suppose I've been lucky, I've had very few colds while on pred.
The drippy nose COULD be the pred - quite a few people have mentioned it as something they've had with pred. It may not be the pred itself but the fillers used to make the tablets. If it were an allergy the pred would help that - at higher doses of pred I could eat wheat, now I'm down low enough for it not to stop the itches.
Thanks Eileen for clearing that one up for me. Although this GP was the only GP over a 2 year period who instantly identified Pmr, I have wondered about his level of knowledge. He hasn't given any guidance at all on pred and side effects or what to expect when reducing. He also says I don't need a blue card, whilst my Chemist says he's wrong.
I have to say though, having the diagnosis and starting on pred has given me back my life literally. I'm so grateful for that. Now, if only there was better info out there on the medication and managing it .....
Your threads ads have been so helpful Eileen. thank you.
Hi Judy
ive woken up today with the chills and my jaw is sore and I have a few aches and pains. It's such a strange condition to have. I have that fatigue feeling again too.