Prednisolone

Colin1

Been on 22,1/2 mg for 6 years tummy not in a good state between them and heart meds. Been trying to get off the Pred for 2 years, at last i'm down to 7 1/2mg for the last 3 weeks but feel so ill, anyone had this problem.

salamander

Hi Colin, are you on a stomach protector such as Omeprazole or Lansoprazole? If not, get your gp to prescribe one asap.

I've been on steroids for 2 1/2 years and haven't been able to get off. It is tough but you must do it under medical supervision as it can be dangerous to drop down to quickly. I am sure you know this though so apologies if I am preaching to the converted

Otherwise, I can't help.

PatriciaH

Hi Colin

I have been taking prednisolone for about a year and a half. Started off at 30mg and am now down to 10mg daily. Every time I reduce I feel terrible. Haven't reduced for about six months now but will hopefully go down sometime soon after my next rheumy appointment in February. I am a bit fed up of the moon face and weight gain now Having said that I have also been very grateful for them, although they have caused osteopenia, but I couldn't walk without them. I sometimes think that I am never going to get off them. My joints are still very swollen and painful.

I think DD knows a lot about this because she has recently reduced her steroids to ZERO. How good is that?? Hopefully she will post and let you know all about her reduction 'plan' and how she felt.

I think I am right in saying that the prednisolone in long term use causes the adrenal glands to stop working. This is why we have to take it very, very slowly with the reduction to give the adrenals time to kick in again. Sorry if you know all this already :oops: If you keep feeling ill then perhaps the reduction is a step too far for the moment??

Do you take the enteric coated prednisolone?? They should help your tummy. Also, do you take lansoprazole as a tummy protector??

I wish you well and hope that both of us will soon be steroid free.

Take care

Patricia

Oops - just noticed Salamander's post. Seems as though we are both on the same track with our advice - lol.

Colin1

Hi guys and thanks yes i do take Lansoprazole 30mg along with anti sickness tablets and Gavascone liquid. it seems the lining in my tummy is in a rather poor state and causing me no end of problems. Tummy Doc says its the long term use of Prednisolone, asprin and Clopridogrel. Yes he understands its not something i can stop taking and my Rheumy is working with me to reduce my Pred but its just not working out. I think it is the effects of that anrenal gland not working as it should. Spoke to my GP who says i should do nothing till i speak to the rheumy. However she thinks my body has become steroid dependant. I am so desperate to helpmyself and benitit my tummy. yes i have the round face and fat belly, funny the rst of me is thin i look quite odd. Been on the worlds longest diet to but not being so active doesent help. Anyway it wasent so much a moan lol but more to see if anyone has simular problems. I do agree with you that although they have caused problems i dont know what i would have done without them.
Take care
Colin

dreamdaisy

I empathise Colin, and you sound as though you have one of the classic steroid body shapes (I remember Annie-Mial saying much the same many moons ago about her shape). It took me nearly a year to come off them, I reduced every three weeks or so by the smallest amount possible, even just 1/2 a mg on occasions, and there were times I thought I wouldn't make it but I did. Mind you I had only been taking them since Feb 07, and I never had a dose higher than 20mg for just a few days, so perhaps this was easier for me to do.

I think for you this could be a much longer process, maybe even up to three years, but during that time you will be making steady progress towards a pred-free life. Reduce by the smallest amount possible every six-to-eight weeks or so, that way your glands will gently be re-introduced to the idea that actually, they DO have a part to play in your health. Pred makes 'em lazy, we know that, and shaking them back into activity is a time-consuming process. If you do go ahead, check with your rheumatologist first, they need to know what you are up to. I didn't - :oops: - I just made the usual pig-headed decision and when the rheumatologist found out I got a right ticking off (deserved) immediately followed by loud congratulations (also deserved!) DD

suzygirl

Colin you may need to see an endocrinologist to see if it is caused by your adrenals. I have a friend who has this problem and they have given her a steroid diff to pred and it has made a massive difference to her. Her adrenals had become steroid dependent and so she take a substitute can't remmber what it is called. It did take a while to get it sorted though.

Sorry to hear you are suffering, stomach probs are so painful to manage.

Take care

salamander

Colin, forgot to ask you if you take soluable pred? It is supposed to be easier on the stomach. I take it when I am reducing as you can't get enteric coated in less than 2.5mg. Consultant said it was his preferred option for his patients.

I know lots of Pcts are switching over from enteric coated to the plain one, mine has done so but I refused to take it as get v bad indigestion otherwise.

Colin1

Thanks guys I thought I knew it all would you have thought with the problem I have I would have been offered soluble Pred I didn’t know they existed Thanks SaL I know I have been taking img ones to make up 9mg then 8mg then on 7 1/2mg its back to the coated. However I have gone back to 10mg today and yes I feel better. Been coming off for 2 years but keep getting sick when I get to 9mg consultant is aware and offerd me no alternative and I did ask.
Suzy I have asked to see the endocrinologist my rheumy said no LOL however I will demand it when I next see her. My GP says I am now steroid dependant but will not do anything about it she has told me to talk to the Rheumy.
DD I see you have been through it yourself I have been reducing very slowly its great until I get to 10mg then the illness starts. Under orders from Rheumy I carried on to 7 1/2mg but I have been so ill for the past 4 weeks had to go back to 10mg today and feel much better. Its a bit of an Obsons choice really but I can remember when I needed them just to get out of the chair.
The problem now is my tummy surgen tells me I have to get off as many of the meds causing the tummy problem again its catch 22. I see my Rheumy in Feb so ill have to stay on the 10mg till I see her.
Thanks to you all for your help as I say it wasent a moan “ oh Colin you little liar ok it was a moan. Catch you all later.
When god gives you lemons make lemonade
Colin

salamander

Could you ask your rheumy and gastro surgeon to get together and agree a plan for getting you off some of the drugs? And ask about the soluble pred as well?
Wish you luck with it.

Colin1

Yes i.m going to make appointment with the GP today As for getting consultants together. One writes to the others Secretary Who just happens to be on her day off when the mail arrives, next thing she is off with the flu for a week, by this time the mail has piled up and there is a backlog, Sec goes on her holidays. Three months later my other consultants secretary gets the letter but the consultant has gon sking in the alps for 3 weeks. I oncs tried to get my chest consultatant togeter with my Rheumy because of the effects of the anti tnfs Chest consultant said he had no time for this that the Rheumy could read his notes in the file. However my hospital preaches holistic care but thats just a joke and a new buz word.

salamander

yeah I know, my consultant seems to be on holiday a lot and I can't get them to talk to one another.

Out of interest and if you don't mind me asking.....you say you are seeing a chest consultant because of anti tnf side effects. Me too and I am wondering what they have said to you.

I've been told to have antibiotics at home and to take them at first sign of infection (I'm asthmatic and get a lot of infections) and also might have to be on low dose for a while if that doesn't work. Waiting for lung function test and ct scan but he could see my lungs were 'too big' on the xray. I'd be interested in your experience.