Prednisolone withdrawal

[smp071266]

I was transplanted at the end of January and have had a few of my drugs stopped. I am experiencing extreme fatigue and muscle/ joint discomfort even my fingers and toes.

I believe these could be side effects of stopping the steroids. Has anyone any idea how long I can expect these aches and pains to last ?

[dizzime]

Hi i was on pred for nearly 4 years after transplant when i was told to start to reduce them. I experienced a lot if joint pain and had tests to see what was causing it. These all came back negative so in the end went back on 2.5mg which seemed to keep the joint pain under control. Been diagnosed with osteoarthritis and osteopenia since transplant but ok with this.

Hope this helps. Good luck. 😀

[smp071266 in reply to dizzime]

Thanks for that. I hope I don’t have to go back on them. Was your osteoarthritis caused by medication- excuse my ignorance!!

[dizzime in reply to smp071266]

Not sure about the osteoarthritis that might just be down to age!! Lol. But i think the osteopenia was caused by the steroids. Had a dexa ??scan which showed this. Your Dr should send you for one after transplant. Do a lot if walking, swimming and gym for this to strengthen bones. Just got to keep going. Oh the steroids also gave me diabetes but i had got on top if that too.

At the moment my steroids have been put up to 10mg after having to have my appendix out as they had to stop my immunosuppressive meds!!!. Back on some now but not all. Back at St James on 25th May and hopefully get back on the right meds and i can drop the steroids down again and get the diabetes controlled again. It is never ending lol. Oh well i am staying positive as always. Keep smiling 😀

[smp071266 in reply to dizzime]

Thanks again. Sound like you’re having a time of it. I also developed diabetes but thankfully that seems to have corrected itself now. I’m seeing my consultant at the end of this month so I guess I’ll get some answers from him about the way forward.

Not quite up to a lot of exercise other than walking at the moment but hope to get a bit more active once I don’t ache so much - I’d have a job getting my Lycra on!!

Take care.

[dizzime]

I think you sound like you are doing really well since you only had your transplant in January, don't be too much if a rush to out the lycra on yet lol. I did too much and ended up with two hernias on my scars, had them sorted out in 2016, ok now though. I think walking is the best exercise and then some swimming later on. Glad to hear you got the diabetes sorted out. I managed to get off all my insulin last October but now had to go back on some Lantus coz of the increase in steroids. I had planned to be in the transplant games this year, swimming, but i have had to opt out coz of the appendix, put a stop to all training 😭 oh well there us always another year. Hope all goes well for you now. Onwards and upwards. X😀😀

[smp071266 in reply to dizzime]

Keep smiling!!

[Paulwil]

Hello,

I had a transplant last October. Prednisolone was tapered down from 20mg daily to 5mg by February. When it was stopped completely I had similar symptoms to you. These only lasted a few weeks and now they have all disappeared.

My consultant said its quite normal. I was told if the withdrawal symptoms are too bad you can cut down more slowly.

I hope it gets better for you soon.

Paul

[smp071266 in reply to Paulwil]

Thank you Paul that sounds encouraging. I had read that there were side effects to coming of them but it took about a week for them to kick in so i thought I’d got away lightly!

[PeterP54]

Hi I was transplanted in 2006 but it wasn't until 2013 that I went on prednisolone to replace azathioprine as it was implicated in my getting lymphoma. Pred was part of my chemo regime and continued afterwards as part of my immunosuppressive regime.

Last year I was told to reduce the pred over several months and stopped it in August. Almost immediately after stopping I had leg and knee pains. The leg pain has now stopped and the knee pain reduced but now also have shoulder pain (specially left shoulder).

I saw a rheumatologist who said the pain was arthritis caused by wear and tear. He prescribed physio (complete waste of time) and referred me to an endocrinologist for a "short synacthen test" (bloods taken over a few hours) to determine if I was producing enough natural cortisol. The test result was marginal but the endocrinologist ruled out insufficient natural cortisol as a cause of the pain.

Pred can be used to treat arthritis, so it is entirely possible that in my case the pred was masking the effects of arthritis. It may be the same for you. Seems that my age is catching up with me.

[smp071266 in reply to PeterP54]

Thanks Peter. I will question my consultant at my next appointment.

[Danisleigh]

My son had his transplant in February and has since had his pred reduced gradually from 20mg to 5mg but so far hasn’t complained of any aches and pains. Not sure if he will stay on 5mg long term now or if he will come off it, he also takes prograf and azathioprine.