Steroids

[Ninnin67]

Hi im after some advice plz ,ive been on steroids since July now today ive stopped . Nurses advice was 10mg 2 wks 5mgs2 wks then stop. Well i feel dreadful today like the flu has struck in couple hrs,even hands are protesting already. Plz advice wud be good as nurses arent very understanding. Im also on methotrexate 20mgs 13 wks now. Thank u

[Hidden]

You should have reduced further before stopping Pred altogether. I'm on 5mg daily and when I tried to reduce lower it was awful. So I'm back on 5mg indefinitely. Have a word with the nurse again. Maybe others will have further suggestions for you.

[KittyJ]

I’d give your rheumy nurse a ring and get their advice (I assume it was them who told you to reduce? ) It might just be that you have reduced too quickly but we can’t know that or diagnose so it’s best to get medical advice. Good luck, I hope you feel better soon.

[FRreedman]

You have possibly reduced too much too quickly, so contact your nurses on the helpline, or your GP, and explain how badly you feel and ask their advice. (Don't say "do you think I've been told to reduce too quickly") Say something like " I feel rotten and (whatever your symptoms are) and I would be grateful for your advice". (Cringeworthy, I know, but the important thing is to get the desired result!!!)

[Oshgosh]

Hi,wrote a reply and lost it. Don’t know your diagnosis,ihaveRA,lupus,NSIP, which is scarring on the lungs/ interstitial.

My maintenance dose-of prednisolone is 7 mgm.

Last time I saw the rheumatologist and ID dr,text said to reduce by 1 mg every six weeks,but to go no lower . Than 5

mgm.

I asked if I would ever e off steroids completely,she said not completely!!i do appreciate her honesty even thoughts otawayswhatI want to hear!

You have 2 choices,ring te nurses and creep a bit

Ring your GP

Or you could put yourself backon5 mgm and own up when you see the consultant.perhaps start reducing if you have any 1gm tablets of prednisolone

In our world we are left between appointments to cope with our conditions ;

[Lolabridge]

Do seek advice from your Rheumy consultant/nurse as previous posts have suggested - today if possible if not ring your GP.

I've been on 10 mg Prednisolone for many months and now on a taper programmes too but was told by my consultant to reduce by only 1 mg every 4 weeks and then only as far as 7 mg. You've been reducing very fast and it would seem you're having a major flare.

[Lyndy]

Poor you! I hate that pain plus flu feeling! I agree with others that you have probably reduced too quickly. I had a number of false starts when I tried to reduce. Eventually I worked out a system: drop 1mg every other day for up to 12 weeks.. towards the end drop 1mg for 2 days, then 3 days etc until that 1 mg has gone for ever... pause.. get used to lower dose then repeat.

In the early stages you might need to stop the drop for a day if you feel bad.

Every 1mg lower is good! xx

[Ninnin67]

Thank u for lovely replies waiting for nurse to call me ...fingers crossed xx

[medway-lady]

Only my opinion but far too quick. I did (but was on high dose for kidneys) down to 10 from 60. 10x 1 month, 5x one month, 4x one month, 3x one month then 2 by one month then 1 for month then if I needed it one every other day (I didn't! ) not easy by some are affected by withdrawal more than others. So go to GP explain situation and seek further advice. I had been on and off steroids for a year for kidneys and RA and it was never easy so now say no to them. But I do think that a tapering injection was easiest and I did that too. So thats a thought ask for that injection, it may well be easiest.

[Mollieharry]

Advice I got was to reduce steroids really slow,one mg per month till nil.i read tapering the drug slowly gives the adrenal glands time to return to their normal pattern of secretion.i have been reducing by 1mg every 4 wks after introducing biologic to mtx and sulfasalazine.

[Esmereld]

Assuming you stopped in the last couple of days. If you’re in trouble and you’re sure it’s because you stopped steroids, it’s just a bit too quick for you. You might need a more gradual weaning. Tell them a.s.a.p. You can find all sorts of information on the internet if you search weaning off steroids. Not to be used necessarily as an instruction for yourself but a bit of education. Everyone is different. I’ve been struggling to get from 2 mg to 1 mg. If anyone had said that to me 10 years ago, I would have scoffed at them. There it is. 5 mg is enough to make a significant difference. Nurses probably thought that the methotrexate was carrying you on now and you didn’t need steroids any more. You probably don’t but need a slower reduction. Do a bit of reading and call those lovely nurses. You’ll get there in time. Just read other replies. What a great bunch of people helping each other. We’re all of the same opinion and a bit of education thrown in to boot. Good luck.

[Dicorn]

When I came off steroids I reduced more gradually. After 2 weeks on 5 mgs, I was on 2.5 mgs for 2 weeks, then 1 mg for 2 weeks. Everyone's reaction is different but stopping after 5 mgs is too much of a shock to the system. Take it more gradually and you will then be ok. Steroids are without doubt a miracle drug but unfortunately we cannot stay on them for too long. Good luck!

[Hidden]

Hello Ninning67,

I understand how you feel. Early on, when I was in a terrible state physically - unable to get up from a chair, ferocious pain etc, I was put on Pred, 10mg for a week, then 7.5 for a week, then stopped. My physical condition had improved a little in that time, but my mood was at rock bottom, constantly crying and feeling I couldn't live in that state, despite the love and care from my husband and family. I rang the consultant's secretary on Easter Monday and left a tearful message. I was put back on Pred like a shot, 15 mg, then 10 then 5. I stayed on 5 for a couple of months and then tapered very, very slowly, reducing 1 mg per month. Finally got off it on 23rd December and no ill effects.

As with everything else, people respond differently to Pred. You should definitely let your nurse or consultant know asap. Slow tapering may be a better route for you. I hope things improve.

[oldtimer]

There are both 2.5mg and 1mg tablets of prednisolone, so it is possible to taper off more slowly than 5mg and stop. If you have been on them for any length of time, you will probably need a slower taper. But it may be that you still need them, suggesting that the disease is not under control. It has common to feel awful coming off steroids, though, achy and very tired.

[Ninnin67]

Thank u everyone for your advice. Ive put myself back on 2.5mg and already feel slightly better. Heres hoping the nurses ring today . Still amazed how this positive aggressive RA came upon me so out of blue and changed everything

[scotslass333]

Yes, like all the others I agree you've not taken long enough to be weaned off.

No personal experience of predisolone, but a friend of mine is at the moment trying to reduce her dose, and she says it's awful. Her gp said it would take a year to get off them completely.

And to add to her misery, the steroids seem to have given her a chest infection, she's also on antibiotics now.

Good luck with getting a proper, tapering off regime in place.

[Justanothermama]

That’s a pretty rapid and abrupt taper for having been on it that long!! I find that very alarming, and I’m no stranger to steroids and tapers. Please call your rheumatologist’ office first thing.

[flowerlover]

You have to consider the possibility that methotrexate doesn't work for you & the only thing keeping your symptoms at bay were the steroids. The tapering was almost certainly too steep. I cannot believe the variation in advice given by the professionals - you do feel alone in the battle at times. Methotrexate doesn't work for me and am now about to start on Imraldi. Keeping everything crossed for you and me

[Mmrr]

It sounds a rather rapid taper.

I'm also tapering at the moment, I've been on prednisolone for 26 months, I was advised 1 mg a week, but I found it too much and was feeling fluish etc like you describe every time I reduced the dose.

So I changed to 0.5 mgs week, seemed to cope better with that and let rheumatology know. The consultant said that she really is heartwarmed that I took my own health into my own hands and should continue to do so, so long as I get off the prednisolone in the next few months.

Sometimes health care staff, don't understand.

I hope you get a reply very soon.