Cidp, Diabetes And Now Gangrene

Hi Michelle,

Welcome to the forum. I don’t think I have any answers for you right now but I will tell you to ask whatever questions you have. There are a lot of very helpful people here who may indeed have an answer for you. There are also back issues and newsletter articles that may help you gain some knowledge..Take care! Gabrielle

Hi Michelle! Oh your poor husband and so young too! My father was a diabetic and my grandmothers sister was a really bad diabetic. She has several toes removed because of gangrene. She passed away last year but was very old. They will have to get his blood sugar controlled first and probably will wean him off the prednisone for prednisone and diabetes is not a good combination together. They may switch him to something else but have to get this infection controlled first. Not really sure what exactly they will do but most diabetics that are on prednisone they usually have to wean them off and do other forms of treatment. Lets just say Prednisone is not a good drug for diabetics.
So sorry to hear this about your husband and I do hope that he will soon be getting treatment and gets well soon! He still may have that chance to walk again if they get him controlled and treated! But not sure what kind of treatment he will be getting! Good luck!
Linda H

Hi Michelle,
What was the dosage for ivig? Are you sure they were giving him enough, close enough together? About the rituxin. At the symposium in Chicago this past fall, they said it takes at least 6 months to see a difference with rituxin, they said too many people stop before it has a chance to work. methotrexate also is beeing used more often as well, it was mentioned as promising at the symposium. Good luck.
dawn Kevies mom

Michelle

I was at doctor today and he mentioned that I might need to take a chemo pill to help with my CIDP. Not sure about this yet?

I am 43, have diabetes, (insulin morning and night along with 4 metformin a day Also have high blood pressure, high cholestrol and sitting with 3 stents in my main artery to heart and five blockages over 50%!

I was taking IVIG every three months but now I am taking 90 grams every month. I wonder if you should try to get more IVIG?

It has helped me but not to the point I am well and out of pain that is why doc asked me to think about chemo pill.

Is he taking anything for pain?

What about physiotherapy?

Hope this helps,
Take care

Rhonda

Hi Michelle! Ohh boy! That is not good with him getting adrenal failure! I too have been stuck on steroids for close to 20 years now. And at times very very high doses! Will probably be on them for life also. I do okay with 10 mgs and can drop the levels to that dose with no problems. But get me under 10 mgs and my body goes nuts!
Not sure how long your husband has been on steroids! Do you know how long? If he has been a few years he might do okay with weaning off but at a very very slow taper! Lets say he is on 15 mgs a day! Dropping down 2 1/2 mgs for me is to shocking. So they gave me 1 mg tablets of prednisone. I cut those in half and drop down 1/2mg every 5 weeks. For me I can only get down to 5 mgs and then I can’t handle anymore tapering. But if he can get down to 5 then that would be considered out of the danger zone with prednisone meaning it won’t do as much harm to his body! The tapering may be to fast too quick and too soon! Causing adrenal failure!
Each persons body is different with prednisone! Some people can only get so low and that is it for them. The doctors can also check him with labs too to make sure he is not going into adrenal shock from the tapering. Hope this helps! For me I can only drop that prednisone 1/2 mg tablet every 5 weeks. If Igo higher dropping then my body goes bonkers. And right now I am back up to 40 mgs a day! Yikes! Good luck and big hugs heading your way! Will say alot of prayers for you and your husband!
Linda H

Hi Michelle! Not really sure what the treatments are today for that. I know they have medications now but not sure what kind. Back in the 80’s when I worked for Crozier Chester Medical Center in PA we had a woman that was simular to your husband. Had both legs amputated because of gangrene and she had poor circulatiion. She was in our hospital so much that we got to know her personally! Her room had to stay warm at all times meaning heated room. But in the summer she hated the heat. So we kept warm leg wraps on her legs. Still had to have a heated room though but not as high as the winter months. I’m not really sure if they still use that method today or not! Most of the time they make you wear circulation stockings in the legs too! He might not like them but they might end up being a must for him! Sometimes they give blood thinners and sometimes they don’t. Just depends on the patent and how bad the circulation is! You will probably see the stockings though as per request from his doctor!
Hugs
Linda H

Michelle,

How many rounds of IVIG did he have?

I did not notice any improvement for a long time!

If he doesn’t have a reaction to it I think I would ask for more, try it for a longer period.

Rhonda