desperate for help
AnonymousSeptember 4, 2006 at 6:51 pm
Hello, I am new here. My husband has cidp, at a recent nuero. visit we were told that the doctor felt he had used all treatments he had available. We were then told to consider calling in hospice. Just wondering if there are other treatments besides IVIG and plasmapherresis. He also wants to take him off imuran. I`m sorry but dont know which way to turn right now to get us through this. Thanks for listening
AnonymousSeptember 4, 2006 at 9:17 pm
Hi Molly, I am really sorry to hear about the problems you guys are having. There are other treatments available beyond the ones he has had. I suggest a second opinion from a new Neuro. Not sure where you are located, usually a University hospital will have Neuro’s experienced with CIDP/GBS. Others may be able to suggest a specific Neuro. Keep posting. we are here to help however we can.
AnonymousSeptember 5, 2006 at 9:09 pm
Hello, Thanks for your advice. We live close to Purdue University. The last time he recieved IVIG, he was also started on cellcept.He had a very bad reaction ,to which one they dont` know. Infusions and cellcept were stopped. He was put back on imuran.Neuro will not treat him with IVIG,said it would be life threatening. He also said plasmapheresis was not an option due to the port he would have to have.We are waiting for neuro to return our call concerning second opinion. Thanks again for the advice.
AnonymousSeptember 5, 2006 at 11:26 pm
I’m a little confused, I have always been led to believe that CIDP was not terminal, I dont have CIDP, (have had gbs) but have heard CIDPers say that. Why does his neuro want him to go to a hospice? (I’m not being facetous, but dont termanally ill patients go to a hospice?) I also don’t understand why a port is not an option for him, does he have something else other than the diagnosed CIDP?
Im not sure how bad the reaction was to the IVIG, but I know that a few of our members do have bad reactions, and sometimes (not all the time) it is the brand of IVIG being used, and some brands are better for some than others. On the other hand, if it was a life threatening reaction, I understand the neuro’s reluctance. Plasmapharesis could be a good alternative, but as I said, I dont know why the neuro said its not an option for him, maybe there is something else to consider.
Just remember, you have to be your husbands biggest advocate. Just like Jerimy said, get a second opinion, because if CIDP is the one and only thing he is diagnosed with, and he has no other illnesses, then I would say that the neuro may not quite understand CIDP.
AnonymousSeptember 6, 2006 at 1:07 am
Hello, Mollymay. I, too, am wondering if your husband has other pre-existing conditions. If not, I for the life of me can’t figure out why your doctor wouldn’t want to put a port in. Many CIDPer’s have one, and complications are rare. How long has your husband been diagnosed? Your neuro has by no means exhausted all treatment options. The BEST thing you can do right now is get a second opinion. P.S. I also have CIDP. Take care and keep us updated. We’re here to support and help each other in any way we can…Vicki
AnonymousSeptember 6, 2006 at 3:42 am
I’m sorry to hear about your husband. Don’t give up hope. There are a number of treatments being used for CIDP, and even some of the toughest cases have responded. Corticosteroids like Prednisolone are among the first treatments most of us try. Chemotherapy also shows promise. DocDavid (whom you’ll find on this forum and on the UK forum at [url]www.gbs.org.uk[/url]) found Rituximab very beneficial, and a number of people here in the UK are using Methotrexate. Most of us end up experimenting until we find something that works.
I agree with Jerimy–you need a second opinion. Unless your husband has some extenuating circumstances like other illnesses, there’s no reason to stop with IVIg and PE.
Best wishes in the battle,
PS: CIDP is fatal in extremely rare cases, but death is usually more attributable to CIDP in combination with something else than to the CIDP by itself. Even at that, the only ones I’ve heard of being fatal were in cases where the autonomic nervous system was severely compromised.
AnonymousSeptember 6, 2006 at 4:59 am
Molly, perhaps we could learn a bit more about your husband. How disabled is he? Is he bedridden, wheelchair or walking with aids? Does he have any other disorder such as lymphoma?. Is he in pain?
The usual course of treatments is IVIG , plasmapheresis, either with or without Imuran, or prednisone in initially high dosage such as 80 –100mg daily. Next come the cytotoxic chemotherapy drugs like Cellcept, Mycophenolate or Methotrexate.
Finally Rituxan may be tried.
As Deb says, we don’t die from CIDP. We either die from something else, such as pneumonia.
I suggest you have a consultation with his neurologist, taking with you a list of queries, which our responses here will have raised. Don’t leave until your queries are answered, you are your husbands attorney, as we as GPs used to be. DocDavid
AnonymousSeptember 6, 2006 at 10:00 am
Run away as fast as you can from that neuro! He obviously doesn’t understand CIDP. There are many other treatments available to your husband, as the other posters have said.
Gammaguard from Baxter is a good brand of IVIG for those that have had reactions. It’s what my (almost) 5 year old daughter takes. It is the most processed IVIG on the market, I do believe. It seems to be tolerated better by some people.
Also, they can slow the infusion rate down signifigantly if needed. I met a boy that has a weakened immune system who gets IVIG 1 time a month. His infusion is done at the hospital overnight & takes about 14 hours to complete. There are ways to give IVIG even when someone has a reaction.
As far as plasmapheresis, it is my understanding that even if a PORT isn’t used that they can put an IV an arm & another IV in a leg & do it that way. It doesn’t HAVE to be done through a PORT. It just makes it more comfortable.
CIDP is NOT fatal. There is absolutely NO reason to give up treatment. There will be something out there that works for him. Sometimes it takes awhile to figure out what that is but I believe that you will.
Let us know how it goes. I am SO angry for you!
AnonymousSeptember 6, 2006 at 11:03 am
I’m sorry to hear your problems. As you can see everyone on this forum is here for you. I have had CIDP with monoclonal gammopathy for 4 years, and IVIG treatments every few weeks for almost three years. It has’nt helped very much. Hopefully, there is not something else wrong. Please ask his doc alot of questions, maybe they will have some answers. If not find a new doc.
AnonymousSeptember 6, 2006 at 11:05 am
I sent you an email through the forum. This is something else you can try to do. I think our foundation administrators would recommend it. The foundation offers a ASK THE DOCTOR column in our newsletter The Communicator. If you asked for a packet, you will receive the newsletter. CALL THE FOUNDATION 1-610-667-0131 and tell them your husbands story, ask them if it can be put in the column for the doctor to answer.
NEVER NEVER NEVER NEVER
WE DO HAVE HOPE
from my heart,
AnonymousSeptember 6, 2006 at 10:11 pm
I want to thank everyone for all of the advise.I guess you could say we dont feel so alone anymore. Thank you!! There are a lot of questions. We are not having a great day so cant stay on long. He was diagnosed with cidp in 1998. Other illness raynauds. The reason doc. would not use a port was his weak condition and possible infection. He is in a wheel chair and in alot of pain. Steroids didn’t help. Possible bad reaction to cellcept. No other chemotherapy drugs have been tried. Sorry for jumping around . He uses light weight sippy cups and silverware that strap around his hand, food needs to be cut into small pieces, some of his larger pills get caught in throat.The last time he was givenIVIG the neuro referred him to an oncologist, he started ivig and cellcept at same time,my husband got very sick they stopped both treatments. The oncologist said nothing more he could do and sent him back to neuro .Doc put him back on imuran. right now we are waiting approval for insurance for second opinion.will write back with more information . Thanks again for being so helpful.
AnonymousSeptember 7, 2006 at 3:07 am
Molly thank you for the update, I have a clearer picture now, I was as disabled as your husband two years ago, I can now feed myself, use a straw for drinking and attend to my own washing, and most of dressing; so take heart. Your husband is in geat pain, this is called neuropathic pain and is part of neuropathy for several of us. It tends not to respond to the usual pain relievers, but there is neurontin (Gabapentin), with a starting dose of 300 -600mg a day ( In divided doses if pain persists through the 24 hours) Increasing to as much as 3,600mg a day. The side efect of drowsiness usually gets less. It is specifically for neuropathic pain. If not tolerated there is its modern cousin, Lyrica (Pregabalin) or the older one Tegretol (Carbamazepine). DocDavid
AnonymousSeptember 7, 2006 at 3:36 pm
I am sorry to hear that he is in such bad shape. Doc David has been in that condition and is also a Dr, he gives great advice and is a friend to all of us. I hope you are able to get a second opinion at Purdue, I think that will be a great next step. If there is anything I can do to help, email me or send me a private message. Take care and tell your hubby hello for me and to hang in there.
AnonymousSeptember 8, 2006 at 4:23 am
agreed, second opinion. an allergic reactions can’t be determined when starting 2 concurrent medications.
if your husband wants to try pheresis, temp cathers can be placed in the jugular or femoral and may be used for about 3 weeks. this procedure is simple and requires no sedation. worth a shot to attempt to improve his quality of life.
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