I'm new here and just off Prednisolone

[purplepuff]

I am just celebrating my first month completely off prednisolone (and the supporting drugs). It's weird as they had become such an integral part of my life. However, I am now finding that my joints are becoming painful hand/fingers and hips, and I am finding it difficult to stand from sitting as my thigh muscles seem very weak. I really do not want to go back on to steroids and am wondering whether these symptoms are just my body getting use to the loss of the artificial steroids and /or the effects of the PMR on my body over a long time.

[SnazzyD]

Hello and a guarded hooray; I can imagine the relief. I have two questions though, were you symptom free before you Stopped? Have you had any tests on your adrenal function?

[purplepuff in reply to SnazzyD]

Well I thought I was symptom free. The truth is as ever more complicated. My husband wanted me off the pills ("They're not doing you any good" his words). I had developed runners trots ( the nicest decription I can find) this meant and still means that if I go for a walk I must always be aware of where toilets are. This didn't bother me too much but it did my husband. It did also mean that long walks in the country became a thing of the past. My husband believes that "it's all because of those pills you take". My doctor said that I no longer needed to go and see him and just get the repeat prescription as my bloods had been pretty steady for several months. I just tapered down the steroids expecting that my doctor would suggest a blood test at some point. He didn't. No as far as I know I've not had any tests on my adrenal function. Sorry rather a long diatribe.

[Longtimer in reply to purplepuff]

I hope you find some answers soon, but will say my husband a couple of years ago made roughly the same remarks as your husband, to which I would always reply, trust me they are doing you the world of good, because without them your life and mine would be very different!..and he knew what I meant by that. It`s your pain and your problem, no-one understands it till it`s them...sorry to sound harsh.....if our OH`s don`t support us it`s because they don`t understand it....I make my decisions on how I feel. Personally I don`t tell him even what mg I am taking....hope you can get treatment to alleviate your problem...

Good luck and keep us posted.....

[purplepuff in reply to Longtimer]

Thanks for that. I think that the truth is he's more scared than I am about it. I know how ill I was before I was diagnosed and the huge difference steroids made. Day 2 was like a miracle.

[Pippah45 in reply to purplepuff]

May I ask how long you had been on prednisolone? PMR can be quite a long term thing.

[purplepuff in reply to Pippah45]

2 years 7 months

[DorsetLady PMRGCAuk volunteer]

Hi,

Could be a few things - as you say - your body does take quite a long time to get back to normal after steroids - anything up to a year. Normal aches and pains of life, that were previously masked by the steroids, resurface- arthritis in particular springs to mind.

However it could be, and it does sound as if it might be, that the PMR is still active. If it is then a small dose of steroids (say 5mg) might catch it before it becomes full blown.

How long were you on the medication - starting dose, rate of taper etc might help us come to a conclusion.

[purplepuff in reply to DorsetLady]

January 2017. I can't remember the dose it was high. I had a flare up about 15 months ago and the steroids were increased. Then tapering down since then. Tbh I didn't notice the flare but the bloods did.

[DorsetLady PMRGCAuk volunteer in reply to purplepuff]

If you didn't have any symptoms, then it may not have been a flare as we describe - your bloods can be raised for many reasons other than PMR inflammation - but whatever it was it’s okay now I guess.

I would say that if you were diagnosed in January 2017 then your PMR be very well still be there - it can last a lot longer than that.

Not sure that your digestive problems (!) are directly related to the Pred - some patients get acid reflux but not usually your symptoms - did you discuss this with doctor? Maybe a different variety would have helped.

As for your husband’s comments - I’d probably better not say anything!

.......other than it’s your body not his.

[purplepuff in reply to DorsetLady]

I guess that's what's worrying me. Is PMR still there and have I been a little premature in thinking I'd dealt with it. As regards the runners trots yes I saw the doctor about it and he didn't think it was to do with PMR, though all the of the medicines mention diarrhea as a side effect. Also there is a great deal of 'folk' medicine referring to diets and inflammation free diets/ probiotics etc that it does make me wonder.

[cranberryt in reply to purplepuff]

Have you tried psyllium husk? 2TBSP a day is enough to help control mine (which was an issue prior to steroids). I would say if you have been off prednisone for a month now it is likely your PMR is still active and you should talk to your doctor about starting steroids again. Maybe you can start at a lower dose this time. 7.5mg and less generally don’t have side effects.

[purplepuff in reply to cranberryt]

Thanks. I think I know that something's not quite right and needed some support. Thanks All.

[PMRpro Ambassador]

A lot of people have similar experiences - the underlying cause of their PMR was very low but still active. Even 1mg pred per day can be the difference between remaining symptom-free and not.