IVIG not working, next step Cellcept
I would concur with everyone is saying that she needs the loading dose of IVIG i.e. the five days of IVIG and then a monthly regime calculated on her weight.
My husband was diagnosed with CIDP Lewis Sumner variant last summer, and started with the above regime and has done remarkably well.
However, the neurologist added Imuran at the beginning of December and we hadn’t done much reading at that point. He became very ill on Dec.22nd and was hospitalized. Looking at his bloodwork from the hospitalization it looks like he was sensitive to the Imuran and developed symptoms of the sensitivity within 12 days of starting the Imuran. The neurologist is waffling over what his illness was i.e. maybe Imuran sensitivity and maybe underlying infection that surfaced when his immune system was knocked out with the Imuran.
Now she wants to start him on Cellcept, but we have a 3 month reprieve where she is keeping him on the IVIG and will reassess his response in April by re-doing his EMG and nerve conduction tests.
Our game plan is to refuse the Cellcept due to lack of long term studies about how effective it actually is, and the possible horrendous side effects. We live in Canada too and it seems cost of IVIG is a factor in adding other drugs so quickly. If we get pushed against the wall over the cost of IVIG, we will discuss with my husband’s neurologist IV Prednisolone.
My husband is 60 years old, and due to having CIDP undiagnosed for so many years he is not a hardy fellow. Cellcept has many side effects and I think the very young and the older population in particular needs to think carefully before accepting treatment with cytotoxic drugs. We discussed my husband’s case with our GP and she said we are well read and informed and if we are not comfortable with a treatment offered we have the right to refuse it.
I have searched endlessly for articles on efficacy of Cellcept on treatment of CIDP and the best I have come up with is one abstract in which the authors say “that MMF(Cellcept) induced a modest benefit in 20% of their patients and stabilized patient condition, allowing reduction of steroid or IVIG therapy”. http:[url]www.neurology/org/cgi/content/abstract/63/4/715[/url]
Dawn Kevies Mom has been very helpful with sending me lots of info. I think it is key that you do lots of reading and be an advocate for your mother. Just from our experience thus far, I would advocate for a proper protocol being followed for the IVIG before it gets ruled out. And then I would ask questions about why IV Prednisolone couldn’t be tried next before the cytotoxic drugs are used.