Not PMR now...harrumpf....
Posted , 8 users are following.
I came off Prednisolone after 13 months and all was well for 4 weeks then I had surgery on my spine and a massive flare up ensued but far, far worse then my original PMR symptoms. I could not get out of bed, lift my arms to comb my hair or even lift a mug of tea without using two hands. Rheumy put me back on 15 mg Prednisolone straight away (over the phone consult) and after being seen in o/p clinic if was thought perhaps it was not PMR at all as steroids took almost 3 weeks to rid the pain this time....but it did the trick...however, steroids will get rid of most inflammation over time, whatever it's cause. So they now think I have fibro ! They are weaning me off steroids by 1mg a week as I have so many side effects from it but am dreading the return of all that body / muscle pain again.......am down to 11mg a week now but have also had a heart problem and was admitted for 6 days to get my heart rate down from 180 ! I am in AFIB with high Bp and now on all sorts of meds to help reduce this before giving me a Cardioversion (to shock the heart back into rhythm) but need to thin my blood sufficiently before this procedure...all a bit scary as my heart was about to blow a gasket......so am on beta blockers, blood thinners and digoxin.....
Anyone hear of, or had a fast heart from Pred ? Anyone any clues as to what may have happened to me...?
I am very confused about it all and reading up about fibromyalgia I don't think that is my problem as a previous Gp thought that may have been the case about 10 years ago - before my PMR diagnosis but the amitriptyline had no effect and my pains slowly disappeared to an annoying morning leg pain.
Would be happy to hear from anyone that can guide me of help in anyway...thanks x
0 likes, 5 replies
EileenH missmagwumps
Posted
I have atrial fibrillation - caused not by pred but by the autoimmune part of PMR. It was made worse (but found) by an i.v. of diazepam - went up to 230 two nights running. As a result I was medicated very successfully - they avoid ablation here until there is no way round it. Last spring I had to have a pacemaker fitted because the paroxysmal a/f has tachycardic and bradycardic episodes and I was having pauses of up to 7 secs leading to dizzy spells and I eventually fell, hitting my head. Then, not having it on my notes and me not being compos mentis at the time, they gave me i.v. diazepam again in the ED - and that was how they found the other problem. All far better now - even the a/f is better controlled on less medication.
It's fine - you get used to it and a good cardio will get it under control.
And it is likely you would need more than 15mg for such a massive flare second time round. That is a typical problem.
EileenH missmagwumps
Posted
PS - the likelihood of PMR having gone permanently in 13 months is very low. Patients who are off pred in that sort of time are far more likely to have flares - so that fits. And you had a major trigger.
They need to try a bit more pred if it took a bit long at 15mg - but pred won't deal with ALL inflammation and it WON'T have any effect in fibro.
ina0821 missmagwumps
Posted
this pmr disease is challenging to say the least i was diagnosed in MAY 2019 however, imsuspect id had it for much longer i also have SJOHRENS syndrome and renal tubular acidosis with kidney stones i haave a long medical mhistory with her2+ breast cancer, osteoarthritis, double mastectomy with failed reconstruction due to radiated tissue quality and a bad plastic surgeon ive had a parathyroid tumor and a parotid gland tumor removed ive had 2 shoulder replacements then tore the rotator cuff on one and had failed reverse shoulder replacement thats when i think pmr started i also had a four level cervical fusion so you are preaching to the choir as theynsay im sorry for your suffering and pain wish i had answers all i could think of for me, at the urging of friends and family is to try and get into MAYO CLIBIC mynside effects are as bad as the pmr the edema is off the carts ive gained so much weight ans not from over eating, its all prednisone ive fallen twice and fortunately didnt break anything using a cane for added support now Fatigue is awful, weakness, sweating, shaking, stiffness, inability to groom self everywhere, wiping after a bowel movement difficult etc THIS DISEASE IS SO DEBILITATING I USE TO HAVE LOW BLOOD PRESSURE NOW ITS HIGH MY CHOLESTEROL IS UP AND MY SUGAR IS BORDERLINE who knows how bad my bones are now
all i can suggest is to see another rheumy or specialty hospital hope you get help and get well
Anhaga missmagwumps
Posted
Why fibro? Which apparently does NOT respond to pred and is not inflammatory.
Elijo missmagwumps
Posted
Ina0821 You have so many serious problems; sounds like you need a complete evaluation of all of your medical problems. Makes my problems seem minimal! Hurry up and get the help you need. Good luck!