new to forum spouse has CIDP

The small window you are talking about is really more about GBS – the acute cousin of CIDP – there does seem to be a small window there to minimize damage but since CIDP is chronic repeated treatments are needed. Is your husband getting any kind of treatment for the CIDP? It is a shame that you went so long without treatment but I don’t think it’s ever too late to try to stop the progress. Perhaps you could ask for a couple of months of IVIg to see if that slows down the progress, or at the very least try him on some steroids to see if that helps. The idea is you have to stop the attacks to give your nerves time to heal so if you can stop the attacks even after seven years the nerves may be able to regenerate even after all this time. Its certainly worth a try. 😀

This is a great place to come with questions – everyone is very helpful and understanding and tell your husband we sympathize!!!

Julie

Hi, Cookie.

Don’t lose hope. I’ve seen some really tough cases of CIDP that responded to treatment once the right treatment was found. Our recently departed friend DocDavid was one of them: he had been a long time wheelchair user when his doctor tried him on Rituxamab. After a few months he was able to walk his daughter down the aisle.

The first line treatments are IVIg and plasmapherisis, which you indicate he’s already tried. As Julie says, corticosteroids are also among the first treatments normally tried. If those don’t work, you can try things like methotrexate and azathioprine, and then some of the anti-rejection (Cellcept is one of those) and cancer drugs. Your husband will feel like a guinea pig, since finding the right treatment is often by trial and error, but it’s very rare for nothing to work.

Best wishes in the battle,

Deb
London

After nearly two years of doctors not agreeing on what was happening with my mother in law, a second opinion neurologist says that he strongly feels that she has a form of GBS…. however because this has come on very gradually, I think it may be CIDP in any event, what are the options for treatment given the lengthy period of time that a diagnosis was lacking? everything i read about IVIG and plasmapheresis seems to indicate that if it isnt done in the first couple of weeks, it won’t do any good.
we are getting her to a specialist in Dallas as soon as we can but the uncertainty is difficult for all

If it IS CIDP and not GBS, ivig will still help. A few loading doses usually are given. Just from experiences on the site, it seems as those on a few loADING DOSES AND THEN MOVING TO MAINT. DOSES DO WELL. The demhylienation is stopped and then healing begins. If you do not get enough ivig the demylienation cannot stop. It is not too late, I even wonder if my son started slowly a year before his near paralysis which peaked at three weeks. We did ivig and it was our miracle. Good luck!
Dawn Kevies mom

Hi Cookie,
Welcome I did the Chemo and all the Rest been on Cellcept for about a year and now I am Learning to walk again 3 years in this rotten Wheelchair is enough. It took about 6 Months for the Cellcept to do it’s Stuff. I do hope your Husband all the best. And to you also Cookie
Regards
Sainter

Dawn

thanks for you thoughts. she went to her arthritis doc yesterday and the doc told her that she had mixed connective tissue disorder…. but in my mind that doesnt account for the inability to walk. so we shall see.

Cookiegirl –

Your husband needs more than just a week of IVIG or plasmapheresis. I don’t have any personal experience with plasmapheresis but I know a whole lot about IVIG. My daughter has received more IVIG, for her weight, than anyone else I know & it’s worked wonders for her (KNOCK ON WOOD!).

With IVIG he needs a loading dose of 2 grams per kilogram of his weight. He needs to take that amount every day for 4-5 days in a row. Then, since he’s been without treatment for so long, I personally would ask for him to get the same amount of grams of IVIG once a week (for 1 day). His blood should be drawn every month to make sure he is handling such a high dosage. I would also suggest that he use a brand of IVIG that is not sucrose based as it can cause problems with kidneys.

What tests were done to diagnose him with CIDP? Did he have an MRI of his brain & spine, a spinal tap to check protein levels and an EMG?

Good luck,
Kelly

I’ve never heard of waiting to treat CIDP because of another illness. With CIDP waiting is probably the worst thing you can do. It’s important to start the treatment ASAP. If they are worried about his blood sugar then they need to use an IVIG that is NOT sucrose based and monitor him closely.

I’m not really sure what the dr’s were talking about when they said they would leave a needle in all the time. I know there are PICC lines but those are only good for short term use & tend to become infected. Tell your husband that he can get a port put in his chest to get his treatments. My 6 year old daughter has one & it’s been a lifesaver. When she was getting loading doses all the time & getting treatments 2-3 times a week, we would leave her port accessed & she could go on about her normal life, even going to school. We have a home care company come to our home for her treatments. That makes a HUGE difference as well.

I know it’s frustrating to deal with someone with CIDP. Believe me, I’ve been through the wringer & back again with my daughter. Hopefully you’ll be able to get your husband on track with taking care of himself.

Kelly

cg,

It seems strange to me that they would allow CIDP to progress while getting his diabetes under control. While they are waiting their is damage being done to the myelin coating and possibly to the nerves themselves. Myelin damage alone repairs slowly, nerve damage even more slowly. Get another opinion if needed, I know that I have read somewhere of an IVIG that is made that can be used for diabetics because it doesn’t contain sucrose, maybe that would help. Lastly there are drugs such as Rituxan et. al and Prednisone has helped me also. Take care and good luck.

Jerimy

I think that they use the term syndrome to describe a collection of symptoms that together characterize or indicate a disease. As far as a cause, there are many things that they suspect have led to cases of GBS/CIDP such as immunizations, camplobactor bacteria among others.

As far as his treatment, I would just hope that they move forward with doing something, letting it go for even a short amount of time can just lead to further damage. Get another opinion if needed and arm yourself with as much knowledge as you can about this disease and it’s treatments. Ask the Doctors lots of questions until you are comfortable with his treatment plan, rehab. etc.

Take care, you, your husband and family are in my prayers.

Jerimy