maintenance drugs

[haze93]

Would welcome any feedback on which type of maintenance drugs I can ask my Dr or consultant about. Azathriprine is ruled out as is methatrexate(sorry about spelling). I took myself off prednisolone, 4mg, at beginning of march when I was told to come off azathriprine due to high bilirubin levels. Now after nearly 2 months I have constant stiffness and joint pain and my feet are really painful when walking and even resting. My gel insoles from hospital aint helping, which is why I think I either need to go back on steroids or recommend a different maintenance drug. Pain killers aren't much help either. Any recommendations would be really helpful.

Thank you.

[John_Mills Volunteer]

Hi Hazel,

There is mycophenelate (Cellsept) if you need it.

It was probably not a good idea to take yourself off steroids suddeny when you were still on 4mg. When you get down to that level you need to reduce slowly & gently to allow your body time to start making its own supply of your natural steroid, cortisol. Some people really struggle to get off pred altogether and need 1 - 2mg long term, which is not really a problem. Also, one of the rules is that when you are taking several drugs at a time for the same condition, you only change one of them at a time, so coming off pred at the same time you were coming off aza was probably not a good idea either. With any change in powerful drugs like immuno suppressants & including pred you should taper withdrawal to allow the body time to adjust, unless you are just replacing one drug with a similar one that does the same job.

John

[haze93 in reply to John_Mills]

At the time of coming off,I was getting frustrated with the consultant who was trying to get me off steroids altogether. I had the test to see if my body was producing its own steroids, and conclusion was my adrenal gland was working well. I stupidly thought I'd be fine without anything. As the saying goes you learn by your mistakes. I will definately mention cellcept to my doctor and maybe a lower dose of steroid. Thanks for the reply it was really helpful, as always. x x

[Ayla Volunteer]

Mycophenolate mofetil (Cellcept or Myfenax) works well for me, in combination with low dose prednisolone, and I believe it is generally well tolerated.

[haze93 in reply to Ayla]

Thank you Ayla, as mentioned above I will mention this one to my doctor. Will let you know how I get on, if and when I can get an appointment. Take care. x x

[watsie]

I am also maintained on cellcept and 2.5 pred. And doing well, is it wg you have? Takes cellcept 6 wks to take effect so will need some steroid cover to control things til the cellcept kicks in.

Best wishes,

Tracey x

[haze93 in reply to watsie]

It's meant to be wg but consultant won't commit to a proper diagnosis. Will mention cellcept to doctors. thanks for your reply. x

[Sunshaz]

I also take mycophenolate alongside 10mg prednisolone works for me.

[John_Mills Volunteer]

John has taken Cellcept for about 6 years now and it seems to suit him well too. Last year he finally tapered off the prednisolone all together after 10 years. He is now very slowly tapering off the Cellcept.