Good morning!
Just discovered this forum. I’ve had PMR for over 2 years.came out of the blue, was having a bath as usual suddenly couldn’t move. I’m sure you all know the rest! I am down to 5 mg of Pred and when I get up in the morning it’s still hard work to get about but as the day goes on it gets better. I try to keep as fit as possible and use a treadmill over the winter which is hard work but very worth while. I’m looking forward to hearing all your stories.👍🏻🤓
Hi and welcome,
Plenty of stories in the FAQs under PMR and just read posts- that's the best way to find out about people...but now you have found, please ask about anything in particular that may be a problem.
Are a member of the charity [don't have to be , but give more info], and have you found a local support group near you?
Maybe have a read of the welcome post that is regularly aired -
healthunlocked.com/pmrgcauk...
Would just say, if it's still hard to get about perhaps your PMR isn't as well managed as it could be - and what do you mean exactly?
I know you're not new, new but this may be of interest -
Hi and welcome! I'll just reinforce DL's post and inclusions.
My suspicion has to be you are not on QUITE enough pred ...
Welcome! Your start was even faster than mine, I think I had a couple of weeks getting weaker and worse and tried a physiotherapist who said you need to see a doctor... but no pain since prednisolone, just some fatigue at times .....this is a very helpful and informative group 🙂
I was tapered down to 5 too fast and soon and with hindsight and all I know now since finding this forum it wasn't enough to manage the daily inflammation and I should have been on a bit more. That was 12 years ago now. I could barely walk and was in great pain but just put up with it tried to carry on as best I could. Mind you the side effects of steroids were so awful expecially the weight gain that I didn't need any persuading to get of them. I knew nothing about PMR in those days and as it turned out nor did the doctors who were treating me. So I agree with PMRPro that you might actually be on too low a dose at this moment in time. How are your symptoms? Do you have blood tests to measure the inflammation?
Hello and welcome. Have you thought about splitting your daily dose of pred to achieve a better start to the day? It worked very well for me and allowed me to continue early starts caring for my pony. I knew I would not cope with taking the pills in the early hours of the morning (the ideal time being about 2.30am before the cytokines are released )but 1/3 of my dose at bedtime and the rest in the morning made life very manageable.
If you are considering raising your current dose as has been suggested here you could add 1 or 2mg before bedtime and see if that helps. Remember to take the tablets with some food to avoid the possibility of acid reflux.
Hi and welcome,
I’m surprised that you have PMR symptoms after being on Preds. Are you taking any other medication?
I my case after I was put on Preds my PMR improved but very slightly and I was still in pain after 6 weeks when it should have abated after 3. The problem was that I also take Phenytoin for epilepsy and all epilepsy medications greatly reduce the benefits of the steroids. This was resolved by my taking the Preds in the morning and phenytoin in the evenings. My PMR pain stopped and after 6 months has not returned and I am down to 9 mg.
Whatever the cause I hope it gets resolved. Still with pain after all this time is not good.
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