Cellcept blues

[ignatz]

I'm having trouble getting up to my therapeutic dose of Cellcept (1000mg am, 1000mg pm) and I've been at it for 2 months now. Every time I take more than 2 a day my throat gets scratchy, I start to cough more, and in general I show the symptoms that I know from experience indicates my body is run down and headed for a cold or flu if I'm not careful. 

Is that what taking this drug entails? Living on the knife's edge of sickness so you can keep your autoimmune symptoms in check? If so I'm not sure it's worth it.

Also, has anyone had any significant benefits from taking a less than therapeutic dose long term?

thanks as always,
Iggy

[Jasper]

I was on Cellcept for 2.5 months. For awhile I was on 1000 mg a day and then went up to 2000 mg a day (doses were split an and pm).

I did not do well on Cellcept. It made all of my symptoms worse except joint pain. In fact, I could barely get out of bed. My fatigue was unreal and the brain fog was horrible. I did nothing but vegetate on Cellcept.

However, I had zero pain while on Cellcept so it did help that. But I could not continue because I was barely existing.

I got Shingles on Cellcept and also an abscess. It was when I stopped the Cellcept so I could take the antibiotics for the abscess that I realized how sick Cellcept was making me and I never restarted taking it.

These drug do make us more susceptible to infections and viruses because they suppress the immune system.

It may be that you need a different immune suppressant.

After I quit Cellcept, I started on Rituximab infusions. They have been a miracle drug for me. All of my symptoms are vastly improved except the dry skin. I am able to function and have a life now. I did get Shingles last fall but Valtrex cleared them up. For me it is worth it to be able to function and have a life. I think you just have to get on the right drug, one that gives you significant improvement, and then you will be able to decide if it is worth it.

I do stay clear of enclosed places, especially in the winter. I also don't go anywhere near people who are sick or have colds or sniffles. It is worth it to me.

I hope things work out for you.

[ignatz]

Thanks for the info Jasper, that really helps. Fatigue and brain fog are my worst enemies and I don't even have joint pain. Makes me wonder why he prescribed cellcept for me. Might be time for a new rheumy but in the meantime I'll talk to him about switching to something else. I believe he said something about wanting to try methotrexate next.

The Rituximab infusions were part of the discussion but it sounded like a 'last resort' option.

Thanks again.

[trc1962]

I also struggled on cellcept with night anxiety and just felt unwell. I didn't want methotrexate as I have enough hair loss already and so the dr. suggested trying the generic form of cellcept - mycophenolate sodium. I have neuropathy and muscle weakness with doctors guessing at sjogrens as I don't have antibodies at all. At any rate, the generic was better for me and has helped, although I still have some pain and weakness. I would like to try rituximab but without a concrete diagnosis it isn't possible. Best of luck to you.

[Jasper]

I don't know why Rituximab would be considered a last resort other than it costs more than the other drugs.

Rituximab has a good side effect profile, meaning most people tolerate it very well with basically no side effects other than infusion reactions at the time of the infusions.

The studies show that Rituximab is effective for Sjogren's, especially for fatigue and cognitive problems but also for peripheral neuropathy and other symptoms such as joint pain. The most effect is noted from 6 weeks to 20 weeks. By the 24th week, when the next set of infusions is due, some of the symptoms start increasing again but they disappear again with the next set of infusions.

I noticed vast improvement in fatigue levels, cognitive function, peripheral neuropathy symptoms, saliva flow, joint pain, and eyes. On Rituximab I now have a life and can function.

If he mentioned Rituximab, maybe you should pursue it.

My Rheumatologist is using Rituximab more and more with her Sjogren's patients and is seeing improvement. She has been able to reduce and get people off of Prednisone by using Rituximab in those who are on Prednisone and she is seeing good improvement in others who are not on Prednisone as well. 

[warmwaters]

I felt great on a low dose of Cellcept (don't remember exact amounts - a few years ago).  Like I was almost myself again. Brain fog less, had energy.

I was only on it for 3 weeks, and got a fungal and bacterial infection. Had to come off - immunosuppression not for me.