Hello,
I know it's a personal thing but I hesitated more about the azathioprine than steroids.
The antibiotic is very strong and only given if really necessary. I have been on it since
Christmas and I haven't had a chest infection since then so it must be doing some good.
The steroids are only given in the lowest dose for you but can be adjusted as necessary
very quickly. If you respond well you are more likely to have them as a temporary thing
whilst getting to grips with other things. You don't say what other drugs you are on.
Hope this helps but the Drs. wouldn't put you on them without thinking deeply about
them Take care Anne

Hello Gogs. i just wanted to say that both times I was on steroids I actually lost weight. The nurse said it was quite unusual though. However it just goes to show that we are all different in the way we respond to drugs. My first course started at 40 mg and tapered by 5 mg per week over 8 weeks. My second course started at 30 mg and was supposed to be tapered slower at 5 mg per fortnight. Of course it is up to you whether you take them or not but maybe you might like to discuss the efficacy of a lower dose with the consultant. You might feel better about doing this and it could always be adjusted if it doesn't suit. In my case with the second lot of steroids I was really wired up and had trouble sleeping so I discussed it with the nurse and we agreed I could taper a bit quicker at the beginning to get me down to 20 mg a bit quicker. This was a lot more tolerable for me. Don't forget steroids will actually reduce the risk of joint damage occurring and so if you do put on one or two pounds it might be worth it. Whatever you decide, good luck and keep us posted, XXX

Hi Gogs - I've no experience of Azathioprine, but for me oral steroids were great! I had a 4 week course - can't remember the details, but I think it started at 40mg for a week then tapered off. At that time there was a thread going about someone who'd had problems actually coming off them completely which worried me a bit, but I stopped as expected with no flare ups. As I understand it the bone thinning side effect is only (or mainly) the result of long term use.

I have a private suspician that the medics don't want us to get too fond of steroids more because their beneficial effects are so wonderful that we could be in danger of becoming dependant on them, so they give all these dire warnings! Obviously there are some risks but the benefits of a short term course of a few weeks, definitely outweigh the negatives in my opinion.

Good luck with your decision - Sylvia xx

Hi Gogs,
It's a really difficult one with steroids, I've been taking them for 5 years now - yes no good I know, most of the time the dosage has not been very high something around 5 - 10 mg a day but they initially made the difference in being able to get out of bed and walk a little to being bed bound the dose to do this for me was 30mg for around 5 days reducing to 20 then lower and lower. As other treatments were added such a enbrel, humira, rituximab then the dose was lowered, and just upped a bit if I had a bad flare.
In additon I had individual joints drained and injected with steroids and that dose did keep me awake for a week where I could have got up in the middle of the night and cleaned the house, in fact for five days after hefty doses I only needed around 4 hours sleeep .
I didn't put on any weight for the first 4 years in fact I lost weight - probably through the RA, my blood pressure has remained fine and I don't have diabetes, goodness knows what condition my bones are in but Ido take alendronci acid and adcal D3 which are both supposed to protect and help the bones.
For me they were the only thing that really worked and gave me hope to keep going and trying other treatments. Getting the dosage down is the hardest thing and at present I'm trying to move from 6mg to 5 aday and expect to take around 3 weeks to do this and will have tp put up with a bit of discomfort along the line.
If I remember rightly my consultant told me our bodies make around 7mg of steroid anyway so thats why they like the dose to be 5 or lower, but I do think it depends on individual consultants.
Best wishes in making your decision
Sheila

Hi Anne
I broke them on holiday in cornwall in August - fell forward onto a concrete path - coming up from the beach. I assume I slipped on sand but fell very heavily putting both arms out and hit elbows very hard! Right wrist scaphoid cracked as well. I wasn't put in plaster... very happy about that! I think because the RA causes swelling they don't like plastering - so I had sling (alternating). They said because of being on steroids, this would slow down the healing which it certainly has! I did slip again on the stairs 3 weeks ago which has impacted the bones - so I think we are back to square one on the healing. The consultant said it was too risky operating on me - because of the RA and not healing up very quickly - I was happy with that!!
I had a dexa scan and my bones are fine... they don't have osteo or anything. So I know the steroids haven't thinned my bones - but they probably have slowed down the healing, along with the humira!
Fortunately I have 2 teenagers at home still - so they are on household duties!!!
love Anne P

Hi Anne P - sorry to hear about your elbows - no wonder we haven't heard much from you for a while, I can't imagine how you've coped with both arms incapacitated!! But I hope it's on the mend now.

Brenda - back pain is so disheartening - I really feel for you. Have you tried gentle exercise? Your physio might be able to suggest some hydrotherapy or other exercises tohelp with posture and to strengthen your core muscles. It's not a magic cure but if you persevere then it helps over time. Good luck trying to reduce the steroids further - it's not good to be dependent on them all the time, I try to think of them as my emergency boost when (if) I get a flare then they're guaranteed to help but day to day I rely on all the other stuff!!

Sylvia xx