Has anyone taking prednisilone and/or mycophenolate (I take both) found the medication starts to have less effect.

[Sarahjh2004]

I've been on both for over a year and have started reacting and I am very tired all the time. Changes have been over the past month and getting worse.

Thanks

Sarah

[PatriciaAnn]

Hi Sarah

Have you made any recent changes to your mediation - reduced the doses for instance?

I took mycophenolate for about four years. For the last six months while I was still on MMF I had managed to finally get off the Pred completely. Whether it was that I couldn't cope without some degree of Pred I don't know. However, after six months without Pred the Mycophenolte ceased to work and I had a major relapse. The symptoms started slowly, I was becoming more short of breath, any kind of effort was too much and my original symptoms started to return.

Maybe the dose needs some fine tuning, or maybe it is time for you and your consultant to consider an alternative. Whatever you do don't leave it too long before you seek professional advice.

Patricia

[SandieB]

Hi Sarah, i have been on prednisolone for a long time and every time they reduced the dose i was absolutely rubbish but after a while your body gets used to the lower dose, maybe your dose has been reduced too quickly which can cause problems, like Patricia says you must seek medical advice from your consultant sooner than later telling them how you feel!!!!!

Take Care

Sandra

[patsy]

Hi Sarah I also was taking a very high dose of pred and had it slowly reduced, I came off them altogether but felt dreadfiul and suffered a lot of pain, I went back on them again after surgery best thing really I felt better staright away now my consultant tells me he would prefer me to stay on a low dose 10mg as my body cannot cope without them. Do talk to you consultant, noyhing worse than this tiredness, and total fatigue.

Patsy

[Meekle]

i am currently on prednisolone. started on 60mg daily two weeks ago, but i was sleeping very poorly and had more energy than the duracell bunny so they reduced it to 50mg daily. Now, i am tired, sleep around 5 hours a night and have developed throat infections that have seen me almost completely lose my voice.

I think the infections are down to the cyclophosphamide to be fair, but considering i am also on Septrin Forte, fluxcloxacillin, augmentin i shouldnt get too many surely!!!

Your body natural produces steroids and when taking high levels of steroids your body slows down its production of them. If you reduce your dose, your body has to play catch up to get it back to a level you need, so you may find that you are in "a trough" whilst your body catches up.

Hope all goes well with you, i am due my second infusion of cyclo this friday - sooo looking forwards to it - not!

Mike

[John_Mills Volunteer]

I spoke to a guy 2 years ago who had been taking Mycophenolate for 10 years and was fine...then all of a sudden it stopped working, he is on Rituximab now twice a year and up to date seems to be keeping quite well... Susan x

[CathT]

Hi Sarah, I'm on a lot of medication for other conditions. I found that after a while my body gets used to a certain dose and it has to be increase to keep the level of cover the same. Then when that is to high I am weaned off it slowly and put on a new med,slowly increasing and overlapping the two. I know itis different for each med and can't always take two at same time. But I would say your body it probably used to that dose now and you should get it checked.

[RichardE Volunteer]

Hi Sarah,

I've been on Pred and Mycophenolate for about two years. Reducing the Pred from 60mg to 5mg over that time. I had a small flare during the reduction which we nipped in the bud by simply increasing the dose of Pred again for a short time before getting back to reducing. Like others have said, I've found that talking to your consultant about any changes in symptoms is the best thing.

All the best,

Richard.