I really dont understand pmr illness
Posted , 13 users are following.
Hi,
I hope you are all well.
I thought I was, with the help and advice I have gained from this forum.
Diagnosed in May with pmr, down from 15mg to 8.
I have tried hard with pacing and a little acceptance.
However, last Thursday gardening, Friday felt rubbish, Saturday felt fine. . .
From Sunday I have been in agony, legs arms etc.
This has been as bad as when I reduced steroids from 12.5-10.
I don't understand why I felt fine on Saturday to how dreadful I feel at the moment, do I increase steroids back up to 9 as painkillers have no affect.
If I ask my rheumatologist he wil say no to increase and plus I will have to through hell week all over again.
Please advise,
Julia
0 likes, 45 replies
kathy67492 julia85224
Posted
Sounds like you are reducing too quickly, and over-doing it at the same time. You may have felt good on Saturday because you rested on Friday when you felt so terrible. I would go back to 9m and try and "save" the flare if you can...then do the "dead slow" taper. Some of the experts on this forum will respond and can be more specific...hang in there😊
mimi1950 kathy67492
Posted
I have not had a wink of sleep, corks this be the prednisone? I was afraid to start taking it at 2 am because it hadnt been 24 hours yet since the previous dose but wil do it tonight. I felt really good yesterday but today I woke up at 8 after finally falling asleep at feel very uncomfortable, but I really full even though I've only had a yogurt to take the prednisone with.. I'm in the ER, waiting to be seen as I have an eye sight issue and headache.
Will keep you all posted.
This site is fabulous!
EileenH mimi1950
Posted
Both the pred and the ?GCA probably are affecting your sleep - I had years of disturbed sleep with unmanaged PMR even when I didn't have pain. I think it can be a common problem in autoimmune disorders.
Good luck in the ER!
mimi1950 EileenH
Posted
I have only a vitrious detachment, they've sent me home and told me to come back if I have any changes.
I'm so disappointed as I was feeling so well and yesterday and today I feel really sick, can hardly walk without feeling fatigued and feel like I've eaten a whole lamb or something. I also feel our of breath a bit it when I walk..prettty scarey. I'm home now, the hospital is only a few blocks from my house, have decided to just wait and see and if nothing gets worse over the weekend, on Monday, I will find a new rheumatologist. I can't understand what is happening to me but it's obvious that I'm not being treated properly. I have a feeling I'm not getting nearly enough prednisone.
EileenH mimi1950
Posted
It IS possible it is coincidence and you have something else too. How long will it take to find another rheumy? But as kathy said above - REST is probably what you need.
julia85224 kathy67492
Posted
Hi,
Many thanks for you're reply.
I am sure you are right, it has been hell week.
I reluctantly increased up to 9mg yesterday, pain eased today, still very "sluggish".
Hope tomorrow is better.
Takecare
Julia
mimi1950 EileenH
Posted
Sorry again, I hadn't seen these posts and have asked a question somewhere else that was answered here. I will rest and then pace myself.. I did run around like a mad woman yesterday.. I had so much energy.
I will take 12.5 MG at 2 am and get plenty of rest. I am realizing that PMR and GCA are difficult conditions to treat and to diagnose. Thank you to all those that participate on here. You are spreading such good karma
EileenH mimi1950
Posted
Ah well - if you raced around it's come back to bite! Don't worry - everyone does it to start with.
mimi1950 EileenH
Posted