has anyone had bad side effects with mycophenelate

[gsmith]

at first it seemd like a miracle,then the side effects crept in,like a repeat of wegeners symptoms,by November I halved the dose,felt better for a while,in December I halved it again,still don't feel good,patiently waiting for an urgent appointment with my rheumatologist ????

[PaulBingham]

Hi,

I have had Wegeners for 8 years,relapsing after 3 years. Prior to my relapse I was taking Prednisalone and Azathioprine. My Consultant changed from Aza to Mycophenolate but I had to give it up and switch to Methatrexate,which I also had to give up.

For me Mycophenolate gave me an uncontrollable rash all over my body which drove me mad ( not literally )

Methatrexate gave me a severe loss of breath.

After stabilising my relapse with Cyclophosphomide tablets, I duly reverted to a combination of Pred and Aza. There are some side effects from the Aza ( lots of actinic Keratoses on my head viz sun damage type spots which are itchy and ugly)

I have been in remission for some 4 years with a 6mg pred dosage and a 225mg dosage of Aza.

I hope this helps

All the best

Paul

[Bill1959]

The problems I had with taking Methotrexate was the Shaking . I could not hold a cup . Write . Eat with a fork . The shaking was getting worse so much so we tried reducing the amount but there was no Change . It was decided to stop all together. And within a couple days I was back to normal . The consultant said that the shaking was not a side affect of the medication . But we wonder why it stopped so quick after stopping Methotrexate .

Not much but hope it helps

Good luck

[rrahman]

Hiya...I'm on 2000mg of mycophenolate.

I have never been on any other since stopping cyclo alongside with valgancyclovir.

I had the shakes and cushingoid syndrome but I thought it ws the steroids as I was advised.

but my shakes stopped....just like that after a while of taking it. I occasionally get pins n needles feeling on either hand or feet. Not usually both pair of hands or feet - weird.

But it may be still your body is new to it and having to adjust. And mycophenolate takes a while to kick in your body system so I've been told by my consultants. But supposed to be a good powerful drug. Perhaps letting your body half it so quickly within a month wasn't a good idea....I know it took a while for my nchanges in my blood after a couple months.

I think reducing it by 50% was too much too soon. Perhaps at 8 weeks interval by 250mg.

I know when my predisnolone was at a steady 10mg my body started to regulate in a lot of ways. My hair stopped falling too I noticed. So I think all our body is different. Perhaps like mine yours is new to drugs. So will require longer to recognised and do its job.

i have GPA vasc. By the way 10 months been diagnosed.

Stay well

R

[Sarahjh2004]

I was 3000mg of nychophenalate per day. Reduced to 0. I also had cushings and severe tremoring. The sad thing is I think I may have to go back on them :(.

I agree we are all different and react to meds in all sorts of ways.

[cedric]

i am on mycophenelate my blood pressure went very low I was admitted to hospital my dr thought it might be the tablets I did not take the tablet 4 3 days was still same was put back on them I have not felt right I am fine when sitting but when I start walking my legs go like jelly if I stand 4 a bit my legs wobble and I feel ill

[Galaxy2]

Hi There

I have taken mycophenolate for 2 1/2 years now. It took a long time to take effect, I was feeling really grotty when I first took it and was convinced it wasn't working, I remember waiting for my symptoms to disappear but it is a long process. I had a tremor and felt very nauseous when I first took it, and I know its difficult to tell what is the result of being ill and side effects but I think they were caused by it. If you noticed wegeners symptoms then maybe thats what is making you feel bad rather than side effects? I remember my neurologist saying my second 6 months on mycophenolate is when I would really notice an improvement. I am so glad I stuck with it rather than change to methotrexate as I nearly did, as my life is transformed from what it was. I notice whenever I change dosage of any of my medication it takes a while to feel right again, these are all very strong drugs and I think our bodies need time to adjust.

I really hope you find the right medication for you and get that appointment asap.

Take care

Jenny