Steroid side-effect reversal

[AmandaClare]

Can anyone who's been on pred or other steroids for years then come off them tell me what side effects disappeared and which were permanent?

Thanks

[AmandaClare]

Thanks Keith.

I could do with becoming less grumpy, so here's hoping. One reason I asked is that while I'm weaning off steroids I'm also trying to find the correct dose of my thyroid meds. So it's hard to pin down reasons for mood or weight changes.

I think I'm noticing changes to my shape and that my face is a bit leaner, though I wasn't really 'moon-faced' before. I'm still on 3mg, coming down v v gradually.

[Thelma]

I have been mostly on them for ten years, with a couple off for good behaviour in 2004-5 ish. Apart from the thinned bones (which cause me no actual problems) everything goes back to normal for me. I'm currently on 5mg daily and largely side-effect free. On higher doses I have the face (I hate my steroid face so much), mood swings, unquenchable hunger, the shakes and insomnia. Probably some more too I've forgotten. Now I still shake a bit but I can handle being on them at this low level. I *think* I'm ok mood-wise, but I do sometimes think that the extremes are worse than they used to be. It's hard to say really because I've been on them so long. Fingers crossed I'll be off them entirely this year and I can be sure I am me.

[dkjane]

I was on prednisone for 6 month..hi doses to start.
I was surprised to find out from a endocinologist, that just being on Pred. for a short time has lasting effect on the bones.
There could be hairline fractures in the future.

[AmandaClare]

Thanks all. That's encouraging, sounds like most effects disappear.

My bones were checked a year ago and things weren't as bad as I'd feared - density was described as 'low normal' rather than clinical. Though I know it's a very long-term game and any damage could cause problems in later years.

[Thumps]

I don't know about the osteoporosis, I'm trying to do a lot of load bearing exercise to strengthen my muscles, but I've definitely noticed the skin getting really thin and papery around the eyes, and I can't remember the last time I wasn't completely covered in bruises Seeing my nephs next week - on my last visit I asked if I could be considered to come off steroids to try and minimise their impact.

[Aileen]

to Thumps... in exactly the same position, am very well, creatinine still in the 70s three and a bit years post transplant, but my skin is becoming papery and dry especially over my knuckles, I bruise easily also. I am (after tx clinic today) down to 3mg pred daily, after 5mg daily for a good long time, 4mg for the past couple of months and the lesser dose hasn't affected my results at all. The aim is to get me off them altogether by September. In my case the benefits outweigh the risks, although there shouldn't be any risks if monitored closely. Get off that stuff if you can! My annual moisturiser bill is a money pit!!!
best
Aileen

[AmandaClare]

I wasn't going to mention the skin effects - glad you did, Thumps. TBH I am hoping for some improvements to my appearance - I'm 40 now and my face shows it. I think the skin round my eyes is looking more filled out since reducing the dose and generally my skin is a bit more elastic. Silly vanity from a woman who can't accept the onset of middle age.

My rate of reduction is frustratingly slow. I go down 1mg after each clinic visit but I only go every 4 months. But it's good to be cautious I guess after so many years on the stuff.

[Thelma]

I too am bruised, dry and papery. I also have scaly patches that I think are associated with one pill or another. Possibly azathioprine, but I'm not sure.

[sporti]

Hi

I am on 2.5mg pred and have the thin skin and bruising as well. The bruising is awful as I only have to knock the skin very slightly and up comes a horrible bruise. As far as the paper skin goes I have tried various moisturisers and I have to say that I now use Dove twice a day and it has made a real difference. It certainly looks a lot better. Hope this helps you. xx

[Thumps]

Update - saw my nephs this morning. They've taken an HLA sample from me today. If I've no apparent antibodies against my donor kidney, then we're gonna try stepping down and withdrawing the steroids. If I do have any antibodies, we'll leave things as they are. Going back in a month to make a decision!

[AmandaClare]

That's interesting, Thumps. Here's hoping you can come off them.

[Thumps]

Just got back from clinic. They found no antibodies to my transplanted kidney in my HLA screening, and as I've had no rejection episodes at all, we've decided to go ahead and step down the steroids

I doubled my Myfortic dosages a couple of weeks ago on clinic orders to see if my gastric issues from before resurfaced but I seem to be ok now. I'm moving to 4mg pred this month, 3mg next month etc with monthly bloods and check-ups, so by October I should be off them completely if all goes well.

I do hope I'm not taking a stupid risk by doing this. Everyone's being very reassuring at clinic, but I know that coming off steroids isn't the normal Guy's protocol... on the other hand I also know that the West London centre doesn't use them at all! I'm very grateful that the team were receptive to my request, I haven't had a single negative vibe from them (apart from making sure I was aware of the relative risks involved).

Overall, as long as I take care of myself and we keep up careful monitoring while we step it down, I'd prefer to be taking fewer drugs overall. I've resisted the temptation to ask if I can stop the statins or aspirin as well, one thing at a time, eh? All my markers for potassium, calcium, wbc and so on are very good so I'm in a good position, I think! My creatinine is a little bit higher than I'd like but we believe that's cos my donor is a smaller lighter girl than I. I shoulda got a burly rugby player to donate instead

I'll keep you guys posted on how it goes.

[AmandaClare]

Great news, Thumps.

The difference approach to steroids in different hospitals is quite puzzling to me. No-one mentioned coming off as a possibility in over 10 years of being seen at the Royal London, but it was broached immediately I moved to the Royal Free. Isn't there some evidence by now about what works and what doesn't?!?

I don't think you're taking much of a risk, not with monthly bloods.

You'll be off them long before me as I'm coming down 1mg after each clinic appt, currently every 4 months. I'm jealous.

[Jessica]

Hi,

My daughter is 20yrs old and been on prednisalone for 8 years. She takes 7.5mg Mon, Wed & Fri and due to the long term use and her young age we have asked about her coming off them.

Could some one tell me the possible affect of her coming off them as when we went to the clinic this week the registrar wasnt really very clear and Im not satisfied that she answered the question.

She also take tacrolimus 1.5mg x 2 daily and azathioprine 100mg daily.

Thanks