Coming off steroids

Are you coming off the pred too rapidly, Alie? I only know because of my experience of polymyalgia but the recommendation is not to drop more that 10% at a time and get used to the reduced dosage before you drop more. I haven't had bad cramp for years now, since I took to wearing bed socks. I don't know why this should be but surmise that it's because the warmth keeps the circulation going! But don't take my word for it - there must be a more scientific explanation.

Have you told the doc how much the steroid helped you? Could he/she perhaps let you continue on a low dose.

Night cramps are often caused by not drinking enough throughout the day.

I don't want to go on taking it permanently if not necessary - but the two doctors I have spoken to (my usual Dr Y being away) had differing views.

Dr A wanted me to taper off quite quickly from 4 tablets to 3, 2 every three days and Dr E who I saw yesterday saying take 5 days to reduce by 1 tablet.

But this is more than 10% anno......
I have decided it's probably a good idea to stay on 3 for now, assuming that the cramps should subside?- and go on reducing it later?

Interesting! Theseus has recently been diagnosed with polymyalgia, and is amazed at the difference the first lot of steroids has made. He knows he will have to reduce the first, high dose quite quickly, and has a blood test on Tuesday, then a follow up appointment. Knowing that dropping by 10% is recommended is useful.

He listens to GNetters' advice, after all the help he got with the hip, so any more would be welcomed.

Found some comments online about what to take for cramps...

Calcium, Magnesium, Vit B and I use Potassium LoSalt anyway so I am taking all of these tonight! Can't hurt and might help.

Now down to 2 tablets, and instead of cramps I have dizziness and I'm headachy. I will stay on 2 until these sideffects go off.......

What's the dosage in mg, Alie? It's good to get away from the steroids asap but not if the symptoms keep on coming back.

Ariadne, I have pm'd you, but also I am sure that Theseus would find this document informative. I don't think all GPs have read it!

Prednisolone is a cortico steroid which takes over the production of cortisols from your own adrenals. You need to reduce gradually to give your adrenals a chance to catch up again. If you reduce too fast, you can cause yourself a lot of trouble.

Steroids are wonderful as a short term stop gap, but do have side effects. the most worrying of which, for me, included thinning of the bones. I have RA so bone thinning it a Bad Thing.
There are alternative treatments for colitis. Have you been referred to a consultant. If not, ask for a referral.

2 tablets are 10mg. I do know how it works... I am also taking Pentasa all the time and mostly it keeps the colitis down.

I already had an appt on the 24th January for the gastric clinic again.
The steroids were to deal with the flareup I was getting in December.
Due to STRESS.....eeek.

I'm down to 1mg per day and hoping I can soon ditch the things completely. Apart from thinning the bones, they have given me very painful tendonitis.

Yes anno I am hoping to stop before long but am taking it slowly and not going down if too many symptoms......

Many years ago DH was taken off all steroids (he was on a high dose for immunosuppression) in order to fight a viral infection.
He went absolutely doolally - hallucinations, shakes, mental "absences" and I was absolutely petrified. He was in hospital at the time and nobody had told me what the side effects could be. He said the hallucinations were the worst nightmares he could imagine and while in hindsight some of the things he said (like "you can park my bed here by the front entrance" and "looking out of a London window "Isn't the view positively alpine") were hilarious, I though he had rapid onset dementia - not funny.
He now carries a card saying that he takes steroids and on no account must they be stopped without medical supervision*.
Gradual reduction has to be the best way - good luck!

Ooo-er. I didn't know they could do this!
Thanks for good wishes Soutra...I am on the way.

Slow but sure - has to be best!

am new to this site. I have been diagnosed with polymyalgia eight weeks ago. Started with 15 mgs of prednisone on for 12 days then lower to 12.5 mgs for 21 days, now on 7.5 mgs for 13 days. I have had some stiffness in my hands and feet and anxiety at times but it comes and goes. What am wondering is this too fast of a reduction for someone who's only had polymyalgia for eight weeks ? I believe when I see her on the 28th of this month she will lower to 5 mgs. I do have diabetes and the prednisone makes my sugar go up very high and I think that's why she is trying to get me off the prednisone as soon as possible.

Smiley6465,Im new also! a work mate I had took steroids and she had side effects of anxiety.Went away as soon as she was off them.

Seems fairly slow to me Smiley....sounds like you are not getting much in the way of symptoms.
I am down to 5mg and tomorrow half that, cutting the little beggers
in half very carefully....

what dose were you on before the 5 mgs and for how long ? Did you have any symptoms and what were they and how long did they last between each dose reductions ?

Started on 20th Dec with 4 tablets a day, 20mg. Reducing to 3 on 1 Jan, 2 by 10th Jan. Now 1. Will be glad when they are finished.

Withdrawal symptoms started with leg cramps in bed, anxiety.......slight dizziness and last week two goes of migraine eye symptoms - something I get every few months normally, it goes in about half an hour.

You have to remember that I have a different condition, colitis, which is usually under control and which flared up in December. So your treatment especially with the diabetes is bound to be different.

(The trouble with this internet, it's much too easy to look up things and find stuff that is even more worrying!)

Thank you for your information. Hope you will be off prednisone soon and will be feeling better.

Thank you. welcome to the site I think it will be a nice place to talk and learn things from the people here.