When and hows does your doctor decide to start on immunosuppressant? I am only on IVIG. Have been on it for 1 year. When doctor increased time interval–every 10 days to every 14 days–I went downhill. Also, what is the normal grip strength? My right and left hand=45. Does Cellcept cause hair loss? thx.
I’ve been on Cellcept since Feb ’10 and I don’t have any issues with it outside of cost (roughly $900/mo).
According to my neurologist, Cellcept takes 6 months to fully “kick in.” In the meantime, I had required a monthly plasmapheresis treatment.
Since August, 6 months after starting on Cellcept, I’ve required no other treatments. I don’t have to see another doctor until the Spring (when I need my med scripts).
I guess I’m pretty fortunate because I continue to shake my head when I read what others with this disease have to go through on a daily basis. My experience now is nothing like what others are forced to endure.
I’m actually in better physical shape now than I’ve been in over a decade. I did completely change the way I eat and workout 5 days a week. Since July, I’ve lost 80 lbs.
I decided to change my lifestyle simply because I got sick and tired of lying in a bed. Lying in a bed and watching TV all weekend can be nice and relaxing once in awhile after a long work week, but it gets old fast when you’re doing it for 5-1/2 months in a hospital or nursing home.
I don’t suffer from any fatigue, pain, lack of balance, etc, etc. My neurologist is simply amazed every time he sees me.
My motivation is to stay out of the hospital and get into the best physical shape possible so that my symptoms won’t be nearly as bad as the first time I encountered this nasty disease.
I am not on cellcept. I am intersted in understanding its use. My sister is starting post organ transplant. It is supposed to assist with pred to stave off
rejection. They told her it will probably be life long drug. Not sure of the dose yet because she just went through the surgery.
Told her about the CIDP folks using it as well. the best i have gathered it is more of a combination therapy, NO?–tim–
Thanks everyone for the information.We went back to our family Dr.last week.He encouraged him to stay on the Cellcept, at least give it more time.We were getting very discouraged and asked his opinion. He also put him on Celebrex for arthritis pain.I’m not sure what is going on,but he has had 4 days straight of feeling pretty good.He even played his guitar with some friends, which he hasn’t felt like doing for a long,long time.I hope this trend continues. This discussion forum is very helpful,thank you all. There are not many other people who can understand what we are all going through.It sometimes feels like a lonesome road to be on.I am writing for my husband as he won’t try to use a computer.I’ll sign off-
[QUOTE=alice]i didn’t realize it was cellcept.
i wonder which is the safest immune-suppression drug…??
I wonder that too Alice. I suspect the side effects are all similar. I think that if a person is young and relatively healthy they have less risk. For my husband, he has a great fear of sepsis after having it on Imuran and he is 61 yrs. old. You just don’t bounce back the same way as you age so when you have something like sepsis as a side effect it puts the fear of death into you. We thus far are resisting his neurologist’s attempts to put him on Cellcept due to cost of IVIG. We face another show down over the subject on Oct. 10th. We’re dreading the appt. and having to keep repeating our rationale for not wanting him on it. Dealing with the doctors seems worse than the disease.
After being on Cellcept for 8 months my husband is being weaned off the drug.It’s after getting the results of a nerve and muscle biopsy. The results showed that in his case the b-cells are involved and the Cellcept is used to treat the t-cells when they are involved in CIDP. He didn’t notice any side effects…although in the last few weeks he has developed a severe diminished blood flow in his 2nd and 3rd toe in each foot to the point of now there are darkened areas. He is being treat at Johns Hopkins and is due to see a vascular and rheumatologist. All bloodwork was normal. Have any of you experienced this? We don’t know if it is related to CIDP or something totally new.
My thoughts are with all of you 🙂
[QUOTE=Bonney Daubenspeck]I hope no one minds if I ask a related (?) question about blood — my Neurologist is concerned about my low white cell counts while I am on CellCept – I have lab work once a week and my counts bounce from 5.9 to 3.2 usually staying around 4.1 or 4.2 — My infusion doctor, a hemitologist/oncologist, assures me that he is not impressed by this level and I shouldn’t be concerned, however I am not at a full dose (2,000 mg?) of CellCept because of my Neuro’s concern. I was switched from Imuran to CellCept in July – introduced at 1000 mg and following week up to 2,000 mg. put back to 1,000 mg after 2 weeks. Health has remained fine, no colds or flu. Any one on CellCept and getting theraputic results at 1,000 mg?[/QUOTE]
I was on 1000mg, and did not see any positve result. My neuro just increased me last week to 2000 mg daily. I am hoping for at least something to work, as the CIDP is rampaging through my autonomic system, besides the motor & seral nerves. But yesterday I got my current weekly blood test’s results, and my current white clood count is 22.1, (normal for this lab is 4.5 to 10.5), which is way high again. I have been running high and low as infections come in, (a blod clot where the venal catheter was and became infected, then I had a lung infection). So, even though I feel okay at the moment, I must have another infection again. This WBC is the highest I have ever had, so maybe it is because I am on the Cellcept, and my autoimmune is way down and can’t fight infections. Today is my last dose of plasmaphereses, and they take the venal cath. out after the last dose–maybe there is an infected blood clot again…yeesh.
But, for the past few months I have been running low with the RBC, HGB, and Hct, though my platelets have been in the normal range.
I have had no comment from either my neuro, nor my G.P.–they just keep taking the weekly tests…
Let me know if you see anything beneficial from the Cellcept…thanx.
[QUOTE=DavidBod]Ken, cellcept (mycophenolate) is not really experimental for CIDP. It is part of the normal armamentarium. I took it for about 6 months with no ill efects routine bloods are to detect early unwanted changes which reverse when the drug is stopped. I kmow many people who take it for a year following renal transplant where it is almost standard treatment. DocDavid[/QUOTE]
But did it help you at all?
Ken, cellcept (mycophenolate) is not really experimental for CIDP. It is part of the normal armamentarium. I took it for about 6 months with no ill efects routine bloods are to detect early unwanted changes which reverse when the drug is stopped. I kmow many people who take it for a year following renal transplant where it is almost standard treatment. DocDavid
Shelbyrose, I have been taking CellCept 1000mg 2 times a day since I was dx. with CIDP in Nov. 2005. I also receive IVIG 60mg every 30 days. My last visit to the neurologist showed I have greatly improved since Jan. of this year. I am back to working part-time in the operating room as a reg. nurse and do Iam able to do mostly what I did before being dx. with CIDP except run. I ran for the last 20 years or so, 20 to 25 miles per week. I weigh 125lbs. So I do not think this dosage is to much for your son. Good luck to him and you.