I've been living with CIDP for 22+ years. My dr. has tried the other conventional treatments for my CIDP over the years and I've been doing well until about 6 months ago. We've gotten aggressive with the IVIG's (every other week for 3 months, and now every week for the last 3 weeks with 500 mg steroids). The next step is chemo. What kind of experiences have others out there had with chemo? My dr. is talking a month of heavy-dose. Waiting your responses - thank you in advance!
Kitcatrenee,
I have no experiences with chemo, I hear it’s a last line drug that the use when things get bad and nothing else is working. I am sorry I am not much help but you may want to go here and ask "http://www.gbs-cidp.org/forums/". There is a Stem cell trail I hear about "http://clinicaltrials.gov/ct2/show/NCT00278629" Maybe you can talk to your doctor about it if things keep getting worse.
I have only had CIDP for a year now and I would really like to ask you some question since you have had it so long. I do IVIG my 3 time on 11-14 and 15 and 15mg of steroids. Even with the IVIG I have what I would call good days and bad days Is this normal or should IVIG take care of all my problems? And if you have been on steroids for 22 years how has that effected you ?
Kitcatrenee,
I did chemo-Methotrexate for 3 months. I took 3 tablets 1 day a week, it did nothing for me. I ended up with Barrett's Esophagas (spl?) out of it. I can have nothing else done now, my neuro has exhausted every means of treatment for me except for stem-cell and plasmapherisis, which I dont know if I want to go those routes or not.
I wish you all the best.
~Blessings, Char
The IVIG's of couse do not cure CIDP but they also do not take care of all the problems with your CIDP. I believe in reality that they help to keep the disease from progressing - but again, that's my take on it. My dr. once told me that the good antibodies of the IG help to fight the bad antibodies of the CIDP. I've been on the IVIG's for at least 12 years and only in the last year have I seemed to be "fallin' apart". I also have been on cellcept for 3 or 4 years, and neurontin. The cellcept is supposed to help with the IVIG and thre neurontin is for pain - it works well for me to sleep better as I have many times sleep is difficult. The steroids have only been occassionally throughout the years - I am a large lady, and we didn't want to do too much with them if we didn't have to. The last 3 weeks with the heavy doses of steroids have been draining on me both emotionally, and sleep-wise. I was an emotional wreck, and slept very little. I have talked with my dr. about the study in Chicago for stem cell research. He thinks I may not be accepted because I am also a diabetic. Thank you for your reponse - Best wishes to you!
Jast said:
Kitcatrenee,
I have no experiences with chemo, I hear it’s a last line drug that the use when things get bad and nothing else is working. I am sorry I am not much help but you may want to go here and ask "http://www.gbs-cidp.org/forums/". There is a Stem cell trail I hear about "http://clinicaltrials.gov/ct2/show/NCT00278629" Maybe you can talk to your doctor about it if things keep getting worse.
I have only had CIDP for a year now and I would really like to ask you some question since you have had it so long. I do IVIG my 3 time on 11-14 and 15 and 15mg of steroids. Even with the IVIG I have what I would call good days and bad days Is this normal or should IVIG take care of all my problems? And if you have been on steroids for 22 years how has that effected you ?
Interesting that you took Methotrexatre - my husband takes that for his psoriatric arthritis. Thank you for sharing! Blessings to you also!
Char68 said:
Kitcatrenee,
I did chemo-Methotrexate for 3 months. I took 3 tablets 1 day a week, it did nothing for me. I ended up with Barrett's Esophagas (spl?) out of it. I can have nothing else done now, my neuro has exhausted every means of treatment for me except for stem-cell and plasmapherisis, which I dont know if I want to go those routes or not.
I wish you all the best.
~Blessings, Char
Kitcatrenee,
I hear that he takes some people off trail so if it keeps getting worse it may be worth a phone call.
Finished up the chemo this weekend. Have good hopes that I will see improvement. I noticed a little more sensory feelings in my right hand, and feel a bit more steady in my walk. Dr. says it's a 4-6 month wait and see of how well it helps. I'll keep you posted. :)
Started back on the IVIG's this last Friday (and to continue every 2 weeks) to help the whole process. I will say that the sensory feelings are encouraging - even the pain that I'm feeling in my feet is encouraging since I had not felt it for a long time. I continue to be hopeful that the chemo and the IVIG's will help kick this CIDP in the butt, and give me some if not all of my mobility back. :)
I have not tried it myself as the Cellcept and IV SoluMedrol has helped me go from paralyzed to walking with braces... Still wish I could just be healed. However, I have had several CIDP friends on line who have had chemo and did VERY well with it. Prayers to you... If you have it, Let us know how it works for you. I do know that is one of the steps in the SCT.
Thank you Jeanbell...I'll continue to update, best wishes and prayers for you to get better also!
Well, I am no miracle child for the chemo treatments, but my neuro agreed to let me try another round, so we'll see how that goes.
My Neuro started me on prednisone a week ago. But in my visit with him, and discussion of options available to me since my insurance was dropped with the termination of my job, he also mentioned he wasn't a hundred % convinced I was actually CIDP, but possibly MMN. ( Multifocal Motor Neuropathy) He said that he wanted to try me on the Prednisone, and I was really not wanting that as I am already fighting the weight gain since being off work, but at this point with out insurance and not much of an income, it was about the only thing he could put me on until I am able to get SSD or Medicaid going. He started me at 60mg/day for this first month. He said if I do have MMN, that the prednisone would not help, and would in fact make things worse and that I would KNOW shortly after I tried it and to let him know soon how it went. I thought it would be 60 mg tabs but it came in 20 mg tabs instead. I have to take three a day. I asked the pharmacist if I had to take it all at once, and he told me I could spread it out if it was easier for me, as long as I got that 60mg in 24 hours. So that's what I did. I had issues with swelling all over and was feeling that I was blowing up like a water filled balloon and was very anxious at the possibility of gaining more. But the first day, as I spread it out over the day, I was using the bathroom often... all day and all night. The next morning, I woke up.. first thing I do is look at my feet and legs.( It's become habit for me now. ) I saw the swelling down... I got up feeling quite energetic and tried to get some things done that I've shown no interest in for a while and stayed busy. I also have issues with a bulging disk in my back and back spasms between my shoulder blades so I did have to take breaks and go again, but I wanted to go again. ( that in itself was a huge change.) The second day I got up and saw that my feet and toes were wrinkly and I was elated! I actually got on the scales and found that I have dropped 7 pounds! I am very conscious of each calorie I consume and have been very careful to keep my calorie intake down to under 1500 a day. More so now since this has happened and starting the prednisone as I know it makes you gain weight. It's been about a week now, and on the scales this morning found that I have dropped 10 pounds. I don't know if it's because I spread it out over the day in stead of a one lump dose each morning, or the fact that I am very careful of my calories or the combination of the two... but the water, ( and hopefully some of the fat) weight is dropping for now. And the huge change for me, was my joint pain is now virtually gone. freedom of movement is a wonderful thing, and I didn't realize just how much the swelling was affecting my joints til they started to just subside. I still have issues with balance, and I have to be careful that I don't fall. ( Neuro also put me on Pepcid for my stomach and I have to take calcium with vitamin D twice a day to keep my bones strong or make them stronger. Apparently prednisone is not kind to bones?) I keep in mind that weight gain will most probably be an issue with the prednisone eventually? Maybe when they wean me off it? So I am vigilant with my diet to help as much as I am able, so when and if it does happen, maybe it won't be so bad? Keeping my fingers crossed. But I guess the point I was making here to begin with, would be that My Neuro said that if I did not have CIDP, and it was in fact MMN, then the prednisone would not help, but would in fact make things noticeably worse and I would KNOW it soon. Maybe this will help you? Please keep us informed. Knowledge is power. ~ Blessed Be Sis
Thanks to advances in the fight against cancer, cancer survivorship rates are on the rise. But many cancer survivors and their loved ones are finding that survivorship can come with additional, and often unexpected, health challenges that continue long after the battle is won.
The Neuropathy Association has been a champion in addressing the issue of chemotherapy-induced peripheral neuropathy (CIPN), from funding groundbreaking research to find protective agents to protect nerves from life-saving yet nerve damaging chemotherapy, to advocating for more awareness and resources for those impacted by CIPN.
As part of our on-going partnership with the National Cancer Institute (NCI) at the NIH and as a follow-up to our recent Facebook chat with NCI’s Dr. Joanna Brell, NCI has asked for our help in reaching out to the neuropathy community to help NCI better understand and address CIPN care issues.