Cellcept For Cidp!! Tell Me If You Did And What Happend! Please I’m Scared
January 8, 2009 at 8:19 am
I tried calling you 2 days ago, will try again. They wanted Kevin to do cell cept, I said no. IVIG was working and I saw no reason to stop. Has ivig stopped working since we last spoke? I am going to re-check my notes from the symposium, but I am almost certain the docs were changing their thoughts on the use of cell cept. Will get back to you. Cheer up woman, check out Walmarts clearance isle, I found some of our favorite candy there yesterday (Reese xmas trees) Just think, the eggs will be coming out soon. Call you later.
January 8, 2009 at 8:46 am
I looked it up on my notes from the symposium. I think it was Dr. Lewis who is on the advisory board. He said there is some concern that cell cept causes cns involvement. I would bet if you do a search on the site it would come up under With Hope’s notes. She wrote detailed notes and probably has the docs name included. Or you could punch in cidp notes, under search, I think that was the title of her post. If ivig is not working as well, just ask to increase the amount or frequency. I can fax or mail you a whole sheet I have on the affects of cell celpt. On the other hand, if ivig was increased and cell cept is the only option, you have to be open to it or perhaps imuron other immunosuppressants, maybe even solumedrol and ivig. Talk to you later.
Dawn Kevies mom
AnonymousJanuary 8, 2009 at 11:16 am
Here Cellcept tends to be one of the later drugs tried, after others have failed. IVIg quit working for me three years ago, but my neuro and I have found a combination of high dose IV steroids and azathioprine (Imuran) is working — and I’m hoping we’ll be able to drop the steroids.
Best wishes in the battle,
AnonymousJanuary 8, 2009 at 1:23 pm
Oh sweetie, I am so sorry that this has scared you so much. I remember going through that. After much angst and research and weighing of options, I agreed to give Celcept a try. Unfortunately it made me really sick. My stomach hurt ALL the time and I couldn’t eat. So after a month or so we dumped that. The ironic thing is that I ended up on a riskyer drug but am finding it to have helped. So the bottom line is, trial and error. I guess you have to weigh the pros and cons and see if it works. It may or it may not. Good luck and let us know what you decide.
AnonymousJanuary 9, 2009 at 12:14 am
I’m new here,but I had to chime in when I saw something different than IVIG. I’ve had about 25 bottles of IVIG. All it did was make me worse. At NY Col. Pres., they found out(thanks to me) there’s different strains of CIDP. Like most of you IVIG was a miracle. For me it was death at one point & almost 2 other times. For me,its steroids that are keepping the disease in check & recovery. One of my biggest problem is hand tremors. Pills aren’t working,but a nice glass of wine or a cold one do the trick. The problem with this is I’m afraid I’ll be pouring Molsen on my Frosted Flakes in the AM!!!!!
Its nice to know I’m not alone fighting this stupid disease. I have a great circle of friends & family. It still gets very depressing & frustrating to try & do something simple & it just won’t happen.
I was involved in an accident on 12/30/03. 5 months later,I’m at Hackensack Hospital getting my 1st of 5 infusions. I was worse after them. But no one picked up on it. IVIG made my straind more aggresive. I walked in on Monday & needed assistance leaving on Friday. It got worse from there,but thats a story for another day & topic. Try & stay positive !!!
AnonymousJanuary 9, 2009 at 8:42 am
Hi Jersey Mike! Seems like Steroids are my best bet too. And I am starting to respond to them but hate the higher doses. They have me on the pill form now of Methotrexate and that seems to be working too! Less side effects also.
I agree with you! I know I’m not alone but wished we all could get well and never see this mess again!
January 9, 2009 at 9:45 am
Lameka, I am currently being treated successfully (… too long to explain what success is, but it [B][U]doesn’t [/U][/B]mean I have been cured) for CIDP by Plasma Pherisis or Plasma Exchange (PE) alone. During my last office visit I was asked by my neurologist to consider two immunosuppresants Celcept and Aziothioprine. His preference is the Aziothioprine in addition to the PE to help extend the time between treatments. I didn’t get many responses, but from the feedback from folks here to my question of what works and side effects, I’m leaning towards Aziothioprine.
I expressed my reluctance of taking either one yesterday to one of the residents while I was in the blood center. Her response was somewhat reassuring to me. She said the side effects are expressed by those who take much larger doses than CIDP patients (such as transplant and cancer patients). My neurologist said in his entire experience he has only to take two patients off of immunosuppresants.
I still don’t like the idea of taking them, but I do feel it is the right way to go for me.
I pray God will give you a definite sense of what is the right way for you to go and that He will give you peace and healing.
Please stay in touch with the Forum. [B]And THANK YOU FOR SERVING OUR COUNTRY![/B]
AnonymousJanuary 9, 2009 at 11:18 am
Gary, I want to Thank You for that beautiful answer. I just want to do the best thing for me. I want to do what ever can be done to push CIDP back, out of my mind,body,and soul. CIDP has seem to consume me and have taken over my life. My anxiety attacks are disabling,and Im doing all I can to only take ATIVAN on twice a day and not 4 times a day like the Dr directed me too.
I think the amount to cellcept she wanted me to take would be cellcept 500mg twice a day for one week and eventually taking 2 in the morning and two at night. would that be considered a high dose or large dose?:D
AnonymousJanuary 9, 2009 at 4:04 pm
I just wanted to write quickly that I take Cellcept 500 mg two pills twice a day and have taken them for almost a year now without problems. Even my blood work has been relatively good. The first week or so I had a LITTLE nausea, but nothing bad, and it could have been in my head for all I know. I started with your dose of 500 twice a day and then increased after a couple of months to 1000 mg twice a day. It takes a long time to take effect so don’t expect immediate results. My neuro says up to a year to be effective. Take care, Gabrielle
January 10, 2009 at 4:12 pm
As you have probably read on other postings, everyone does not always have the same results using the same treatments.
My success for years has been PE, IV solumedrol after the PE and 2000 mg of Cellcept daily. I have been on Cellcept for about 4 years now and have had absolutly no side effects of any kind. I get blood work every 4 months to check liver and kidney functions so we can stop it if anything shows up in the lab work. Everything is still normal.
I started Gamunex two weeks ago, once every three weeks, but also continue the PE with IV Solumedrol after each PE. I also am still on Cellcept, 2000 mg daily. Half in morning and other half at night.
I had GBS in ’85 and was totally paralized, so when they diagnosed CIDP in ’96 I made the decision that if a treatment protocal was not helping me, I would go to another treatment until I hit on the combination that worked for me. I also researched each drug or procedure and evaluated the risk vs reward and so far have only backed away from the MS drug Tysabri, which I tried for 4 momths. It was not helping my CIDP and the newly reported cases of brain cancer made that decision easy.
The key is to find the treatment protocal that your body responds to. This may require several different approaches, but be patient and communicate with your doctor. You know your body better than anyone else so don’t hesitate to let him know if what you are doing is not working. Stay positive and keep that fighting spirit alive. Refuse to lose!!
My thanks also for serving our country. Good luck.
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