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Living with Polyneuropathy CIDP, GBS, & CMT

IVIG and rash

3 weeks after my first IVIG session I broke out in a rash with red bumps mainly over my chest area.Dr put me on tapering dose of Prednisone which helped it some. As soon as I finished the meds the rash came back and it is worse covering more area. Feels like bad sunburn!

Has anyone else experienced these symptoms? Is there anything besides Prednisone that would give relief.Hopefully, this will straighten up and I won't be rejected for IVIG treatments because I feel the first treatment had helped with the numbness of the CIDP.

I went off prednisone because of all the bad side effects. Now on IVIG only.

I've been on IViG for 12 years now and strangely enough I have had exactly the same thing occur with my last treatment, never occurred before. I have had several different reactions mostly one off's ovcer the years so I wouldn't worry to much

After the initial front load of IVIG, I broke out all over also and my skin peeled all over. Since then, I have taken 10 mg of Prednisone for 3 days previous to each infusion. About a year ago, I broke out all over my scalp which has continued for a year now. I have come off of all other meds to make sure I wasn't having a reaction to one of these meds, but still have the rash. My dr. now has bumped up the Prednisone to 40 mg for 3 days prior to each infusion. I just started on it today, but am praying it is going to help. Please keep us posted on what you find out.

If you take Prednison dont go out direct on sun!

I got three or four red bumps but I sun naturally on a regular basis. The bumps only were where my cotton t shirts strap were at.

My husband broke out with similar rash 12 days after I.V.I.G. round #6. I is all over his face, eyelids, chest, back and inside elbows. On his chin it flakes like excema. He was already tapering Prednisone per Dr. but after I read some of the information I found on the internet, I advised him to load up on Prednisone. It is not helping yet, but the rash does seem to reduce a little at different times throughout the day.

Bev,

After the reaction to my first week of IVIG, my neuro made me hold off until Jan 2015 for my next try at it. I was on Prednisone for that whole time (and still am). Short story, I had another reaction which was worse than the first. Neck, chest and palms got beet red and then all the skin peeled. She won't allow me to try again.

Started on Cellcept two months ago. 750mg twice/day. My appt is next week. Hopefully she will let me off the Prednisone.

I have gained a lot of weight and am having trouble breathing. Saw a Pulmonologist two weeks ago and she got me off Lyrica and back on Neurontin. Since then I have heard some horror stories about Lyrica. Anyone taking it should watch the side effects closely. Give your husband support, because this disease is a bitch and explaining it to someone who does not have it is difficult. Hope his rash clears up.

I had different rashes before I even started with my IVIG infusions. Nobody knew why. I do take Benadryl for it. It's like a nerve ending pops through my skin. The bumps are individual and can pop out anywhere including my big toe. They aren't clustered like the shingles. I'm ready for my next infusion on Wednesday and have had lots of bumps this weekend. The rash also comes out when I try to do too much.

JanD,

I have the same rash issues as you do. My rheumatologist looked at them and my other symptoms/blood work and it turned out to be Vasculitis. Not related to the CIDP at all but it is another autoimmune disease. They say autoimmune diseases like company meaning most people have more than one. I’ve been diagnosed with six. Interestingly enough the IVIg helps them all. The treatments are all similar so at least I don’t have to add much medication. I just have to get a dose of extra steroids when it flares.

Have you been checked for Vasculitis by chance? If not you may want to because there are several types. Some can be serious if not treated in time. Hope this helps you!

Tinapet

Thank you, Tinapet. I'll check out Vasculitis next.

Jan

Tinapet said:

JanD,

I have the same rash issues as you do. My rheumatologist looked at them and my other symptoms/blood work and it turned out to be Vasculitis. Not related to the CIDP at all but it is another autoimmune disease. They say autoimmune diseases like company meaning most people have more than one. I've been diagnosed with six. Interestingly enough the IVIg helps them all. The treatments are all similar so at least I don't have to add much medication. I just have to get a dose of extra steroids when it flares.

Have you been checked for Vasculitis by chance? If not you may want to because there are several types. Some can be serious if not treated in time. Hope this helps you!

Tinapet

Thank you, all. It does not look like vasculitis, but I will encourage him to make an appointment with the Rhuematologist.

As I stated I switched from Lyrica back to Neurontin which I had taken before. My Neurologist says it is in the same family of drugs. I found out that Neurontin has it's own side effects and of course I got them. Can't sleep, twitching of arms and legs at indeterminate times. Appetite increase uncontrollable. I'm really at a lost at this point. Seeing too many Dr's and getting no results. In the last year or so I feel like all my Dr's are churning patients, for lack of a better word. They can't wait to go to the next patient and leave you sitting there saying to yourself, WTF? For instance, I started seeing a heart Dr two years ago and he ran me thru "ALL" the tests that medicare would pay for. He gave me a clean bill of health saying I had no heart or artery problems at all. He now sees me and says "I want to see you again in 4 months". I feel that if I have no heart problems once a year would be enough. I'm ranting!!! Isn't Obamacare wonderful? The Dr's are put in a position that they have to push patients thru to manage their cash flow in the office. Oh well, maybe tomorrow will be better.



bbirder said:


After the reaction to my first week of IVIG, my neuro made me hold off until Jan 2015 for my next try at it. I was on Prednisone for that whole time (and still am). Short story, I had another reaction which was worse than the first. Neck, chest and palms got beet red and then all the skin peeled. She won't allow me to try again.

Started on Cellcept two months ago. 750mg twice/day. My appt is next week. Hopefully she will let me off the Prednisone.

I have gained a lot of weight and am having trouble breathing. Saw a Pulmonologist two weeks ago and she got me off Lyrica and back on Neurontin. Since then I have heard some horror stories about Lyrica. Anyone taking it should watch the side effects closely. Give your husband support, because this disease is a bitch and explaining it to someone who does not have it is difficult. Hope his rash clears up.

Dear Bbirder,

I understand your frustrations. I think most doctors are like that now. I also understand your frustrations with side effects of drugs. I tried Lyrica and lost my brain. I knew not to even try driving. I might get lost and not find my way home. It was a horrible feeling.

I couldn't take regular Nuerontin. But, Horizant is a time release form of Nuerontin. It's the first and only drug for CIDP that I can take. It doesn't clobber me like straight Neurontin. It would be worth a try for you. When my legs twitch and feel like ants are crawling around in them, I take Pramipexole. That really knocks me out. But, then I call it a day and go to bed.

As you said, tomorrow is another day. I hope it goes better for you and a lot of people!

Jan

bbirder said:

As I stated I switched from Lyrica back to Neurontin which I had taken before. My Neurologist says it is in the same family of drugs. I found out that Neurontin has it's own side effects and of course I got them. Can't sleep, twitching of arms and legs at indeterminate times. Appetite increase uncontrollable. I'm really at a lost at this point. Seeing too many Dr's and getting no results. In the last year or so I feel like all my Dr's are churning patients, for lack of a better word. They can't wait to go to the next patient and leave you sitting there saying to yourself, WTF? For instance, I started seeing a heart Dr two years ago and he ran me thru "ALL" the tests that medicare would pay for. He gave me a clean bill of health saying I had no heart or artery problems at all. He now sees me and says "I want to see you again in 4 months". I feel that if I have no heart problems once a year would be enough. I'm ranting!!! Isn't Obamacare wonderful? The Dr's are put in a position that they have to push patients thru to manage their cash flow in the office. Oh well, maybe tomorrow will be better.



bbirder said:


After the reaction to my first week of IVIG, my neuro made me hold off until Jan 2015 for my next try at it. I was on Prednisone for that whole time (and still am). Short story, I had another reaction which was worse than the first. Neck, chest and palms got beet red and then all the skin peeled. She won't allow me to try again.

Started on Cellcept two months ago. 750mg twice/day. My appt is next week. Hopefully she will let me off the Prednisone.

I have gained a lot of weight and am having trouble breathing. Saw a Pulmonologist two weeks ago and she got me off Lyrica and back on Neurontin. Since then I have heard some horror stories about Lyrica. Anyone taking it should watch the side effects closely. Give your husband support, because this disease is a bitch and explaining it to someone who does not have it is difficult. Hope his rash clears up.

After my 2nd treatment I broke out from my waist up. Went to dr because nothing I had at home was helping it, not even Benedryl. My dr sent me to dermatologist. They took a biopsy from my back, and gave me 2 different samples of med. One for my face and another one for the rest of my body, she even brought in another dr to look at me. They were very good about communicating with my dr since I could hear them on the speaker phone with him. When I went to get my stitches out the results were, I am having reaction to Gammaked. Was put on prednisone for 2 days prior to next treatment, and 2 days after treatment. They told me that this outbreak would probably stay with me for about 4 more weeks. Thankfully, all my docs have put their heads together and I will be starting on GammunexC for my treatment this month, and going to do the prednisone again with it to see what happens. My rash starts out very tiny, then gets a little bigger, almost like a pimple. I have not had more to pop out since my last treatment, which was Oct. 29 & 30. One of the dermatologist done some research and told me that he found 1 case of a person who has CIDP, that has had a reaction to all of the IG meds..