cellcept and or imuran anyone ?

    • Anonymous
      September 18, 2008 at 2:52 pm

      Well, the dr is going to keep me with the current ivig dose of 40grams…one in two weeks and another four weeks later. If there is no improvement or there is worsening, we will try the cellcept and or imuran in addition to the ivig. I’m not sure if she said either or both. I will say I was getting alot more than that each day of the five day infusions with the other dr. Like 3 or even 4 bottles…60 to 80g.

      She doesnt agree to the loading dose b/c I had a reaction…the one time headache and rash each time there after. She also said we may start going every two weeks rather than four.

      She said she wants to keep me from getting worse but not as aggressive as my other dr was. His problem was that he dc’d the IVIG and said lets wait 6 mos. That is the only reason I moved on.

      She also wrote a script for another AFO for the right foot. Agreeing I should wear it for distance. Yeah, just like I wear the left one. note sarcasm.

      My hubby is gonna be stern with me I think…he knows I am the worst possible patient and I dont always do as I’m told.
      When he hears of the second AFO…he’ll say, “I’ve never seen you wear the first one”.

      She had no explanation for the roof of my mouth…said its not neurological. A relief I guess.

      also i got some samples of lamictal for pain issues…anyone take that ?

      the cellcept and imuran….what to expect here ? I read that they can increase cancer risk. I am a hugely high risk already.

      calgon….take me away.

    • Anonymous
      September 18, 2008 at 3:32 pm

      I have done both the Imuran and the Cellcept at different times. The Imuran never went into effect that we could notice. The cellcept has been wonderful for me. I was on it for a year before I had my daughter and it kept me symptom free. Then I was on it for almost 2 1/2 years after my daughter was born with IVIG about every 7-8 weeks. I didn’t notice any side effects with the cellcept except that my skin was a little more sensitive to the sun. I had weaned off prednisone onto it the first time so I was VERY happy that I didn’t have any side effects. As far as I understood the increased caner risk is due to the increased sensitivity to the sun and the fact that it supresses your immune system. (like other immunospupressants, this increasing your risk for cancer)

      For me, the benefits far outwayed the cons.

      Hope this helps!

    • Anonymous
      September 18, 2008 at 3:52 pm

      thank you Christie…

      can you tell me what you mean by symptom free ? My symptoms are weakness in the hands, arms, legs, drop foot both sides…but I wear tennis shoes and just kind of waddle so I fake THAT pretty good…:rolleyes: But, I have paralysis in all of my toes with the big toes now “falling” I guess you’d say. I walk pretty bad if I have to admit it. With shoes, like I say, I fake my way thru until I go any distance and then I slow way down and look different.

      I’m so confused. I’d really like to know what symptom free is for you…

      thanks !
      Stacey

    • September 18, 2008 at 6:09 pm

      Stacey,
      The important thing to me is to forget about what the side affects for cell cept and imuron are for the time being and that they are irrelavent IF…. it is your only option. I really believe it is not your only option. You have to give ivig loading doses another try. investigate what brand you used AND DEMAND ANOTHER, FIND OUT IF IT WAS POWDER OR LIQUID. fIND OUT WHAT THE FLOw rate (sorry about the caps) was and make sure it is the slowest possible. What you are currently getting is not even 1g/kg. Not to mention, your symptoms are progressing. Obviously the small dose is doing nothing. At this point, you DO have other options than the cell cept or imuron. I can fax you a 3 page sheet on cell cept, it was considered for Kev because it would be less trouble than the ivig, less money, but in the long run more harmful. If it were your only option left, of course you have to put the side affects asside and think about grabbing cidp by the horns w/ cell cept. But you are not there yet. If you don’t convince the doc to increase ivig, you have to switch!!!! Ask if the doc could include solumedrol before the infusion starts as a pre med to aid with the side affects. That could be a possibility. The reactions do get better, Yes, this time Kevin did get the migrane throw up back pain rash thing, but he did not the 6 previous months and as I reported, the doc said he is cidp symptom free. Reflexes are back, runs, rides bike for mile, gets air on his bike…. You could be in the same position!!!!! Please fight for you and Connor and your hubby. We will say extra prayers to ask God to give you stregnth and courage to face the doc.
      Dawn Kevies mom

    • Anonymous
      September 18, 2008 at 8:34 pm

      I have to say I dont understand why this dr is so against more Ivig. I am wondering if I should call the first neuro and ask him to set me up with the IVIG. He doesnt do the home stuff tho… I dont think I can convince this dr to order a higher dose b/c I have asked. She doesnt agree. And I get to emotional to argue.

      And, will he get mad that I went to someone else ? Or do I try a third dr.

      I thought I was stuck the way I am…but, maybe I’m not. Maybe this ISNT permanent damage.

      Should I make an appt with the first neuro and tell him I went for another opinion. I dont want to make him mad. He did say lets wait six months and see what happens BUT when he ordered the ivig, he ordered the correct amts.

    • September 18, 2008 at 9:46 pm

      I say yes, but what do I know? I think that a good compassionate doctor would appreciate the honesty. I also feel that he would feel honored, if you will, knowing that you came back to him. Just explain that you were going down hill in between the six months, it is the truth. Tell the truth about the inadequate doses this doc is offering. he already knows your history, status and has tested you. He will see the decline and probably order ivig asap. Just be sure to ask for that different brand, make sure it is liquid and a slower flo rate. Heck, while you are getting it out on the table, just outright ask if he would consider home health. Explain that it would be much easier with Connor and on your family life in general, not to mention make things easier for you, physically and mentally. Go there full on in honesty and begging pleading mode. What do you have to loose at this point!!! You can get better, look at Kevie!!!!
      Dawn Kevies mom

    • Anonymous
      September 18, 2008 at 10:02 pm

      Hi Stacey,
      I am totally sympathetic to your situation. Dawn is absolutely correct saying that since you haven’t had appropriate doses of IVIG etc. that you need to be strong and firm about wanting to be on therapeutic doses before you move on to other options. Many people do achieve benefit from drugs like Imuran and Cellcept, but they are powerful drugs with many side effects and they are considered primarily steroid sparing drugs (i.e. if you take steroids, you can take less if you are on one of them). And there are no clinical trials proving their benefit in CIDP as a primary treatment. It seems to be all anecdotal evidence. Research is showing from clinical trials that IVIG–in particular Gammunex is beneficial. [url]http://www.earthtimes.org:80/articles/show/fda-grants-approval-to-talecris,540439.shtml[/url]
      But patients seem to be getting pressure to take drugs such as Imuran and Cellcept for cost reasons and not always because other drugs such as IVIG have failed. My husband doesn’t really speak up for himself when he is with the neurologist so I always go in with him to ask the questions and nudge him to speak up and say what he wants. But we too walk a tight rope of trying to advocate for ourselves based on our reading and experience–and trying not to give the neurologist the impression that we are know it alls or difficult people. Because we are not that way at all. We read lots and learn lots here on the forum, but we find it very difficult not offending hubby’s neurologist when we keep getting pressure for him to go on Cellcept so that the IVIG can be discontinued. We have had point blank statements from his neurologist that going on the Cellcept is purely a cost issue. So everytime he goes in to the neurologist to get his IVIG prescription re-newed, we are highly stressed wondering if the neurologist is going to fire us because we dig in our heels. It shouldn’t be this way.
      I guess in your shoes I probably would try again with the second neurologist and take in Dawn’s article about Cellcept, and go in with written comments about why you think you should be on the loading dose again and about pre-medicating for possible side effects. And I would take in a family member to help bolster you when you present your rationale. I think it helps when I go in with my husband as he easily gets derailed with any pressure, and I just do the broken record thing and refer to my notes. So far it has worked but the first week of October we will be facing the hammer again over Cellcept. I just keep practicing my little speech i.e. my husband has done very well on IVIG, he is frightened of the side effects of drugs like Imuran and Cellcept, he has had a bad experience on Imuran, and he wants to stay on IVIG and we hope you will advocate for us as we are thrilled with is response to treatment thus far. Good luck.
      Laurel

    • Anonymous
      September 18, 2008 at 10:30 pm

      Stacey,

      For me, symptom free is exactly that. I do not have any weakness, numbness, pain, tingling, etc. I feel 100%.

      The decision to start any drug especially an immunosupressant needs to be a personal one. I have gone through many different treatments some worked, some didn’t, some worked by themselves for awhile and then I had to combine. This disease is a roller coaster and sometimes requires you to adjust what has been working. If you have any other questions, feel free to IM or email me. I would be happy to talk.

      Best of luck with whatever you decide.
      – Christie

    • Anonymous
      September 18, 2008 at 11:13 pm

      [QUOTE=espersen4]Stacey,

      For me, symptom free is exactly that. I do not have any weakness, numbness, pain, tingling, etc. I feel 100%.

      The decision to start any drug especially an immunosupressant needs to be a personal one. I have gone through many different treatments some worked, some didn’t, some worked by themselves for awhile and then I had to combine. This disease is a roller coaster and sometimes requires you to adjust what has been working. If you have any other questions, feel free to IM or email me. I would be happy to talk.

      Best of luck with whatever you decide.
      – Christie[/QUOTE]
      Hi Christie,
      I hope you don’t mind, but I have a couple of questions please. Are you still on the Cellcept? If not, how long were you on it? How often did you have bloodwork? Did you ever have any episodes of fever or infection? If so, how did you deal with that being on Cellcept? i.e. antibiotics right away? What dosage were/are you on? How long after going on Cellcept did you notice improvement? Thanks for any info. you care to share.
      Laurel

    • Anonymous
      September 18, 2008 at 11:33 pm

      I’m not on the cellcept now. I went off of it at the beginning of June becaue my husband and I are trying for baby #2. I have been on it twice the first time for a year, symptom free, side effect free and I didn’t have to have IVIG. 500 mg 2/day The 2nd time I was on it for almost 2 1/2 years. Still no side effects but I did relapse about every 7-8 weeks and had to have IVIG also. In between relapses I was symptom free. I was on 750 mg 2/day

      The first time, I had monthly blood tests. The 2nd time I ws not as good as I should have been but did have intermitent blood tests. I never had any significant illness either time I was on cellcept. I did get the flu or a cold here and there but I always recovered quickly.

      The first time, I weaned off prednisone onto cellcept and had an IVIG during that process so it is hard to say exaclty how long it took to take affect. The 2nd time, I was a few months post pardum and my symptoms had come back with a vengeance. I had started the cellcept and still had to get IVIG at increasing frequency for about 2 months. Then I did a round of IVIG every day for 5 days, then once a week for a month, then every other week, etc. Until I was able to go 7-8 weeks in between. So it is a little hard to say how long it took for the cellcept to work the 2nd time too. Sorry for the “non-answer” answer but that is the best I can do.

      For me, Cellcept has been a lifesaver. I was able to go a whole year basically feeling “normal” again. And then the 2nd time, it enabled me to take care of my baby. Without it, I was relapsiing every 1 1/2 weeks and was getting so weak that I could not hold her, pick her up out of her crib, or even dress her. That broke my heart.

      I hope this helps. Please ask me anything you want. It helps me so much to feel like I can offer something on this forum. I have not experienced that before.

    • Anonymous
      September 18, 2008 at 11:47 pm

      [QUOTE=espersen4]I’m not on the cellcept now. I went off of it at the beginning of June becaue my husband and I are trying for baby #2. I have been on it twice the first time for a year, symptom free, side effect free and I didn’t have to have IVIG. 500 mg 2/day The 2nd time I was on it for almost 2 1/2 years. Still no side effects but I did relapse about every 7-8 weeks and had to have IVIG also. In between relapses I was symptom free. I was on 750 mg 2/day

      The first time, I had monthly blood tests. The 2nd time I ws not as good as I should have been but did have intermitent blood tests. I never had any significant illness either time I was on cellcept. I did get the flu or a cold here and there but I always recovered quickly.

      The first time, I weaned off prednisone onto cellcept and had an IVIG during that process so it is hard to say exaclty how long it took to take affect. The 2nd time, I was a few months post pardum and my symptoms had come back with a vengeance. I had started the cellcept and still had to get IVIG at increasing frequency for about 2 months. Then I did a round of IVIG every day for 5 days, then once a week for a month, then every other week, etc. Until I was able to go 7-8 weeks in between. So it is a little hard to say how long it took for the cellcept to work the 2nd time too. Sorry for the “non-answer” answer but that is the best I can do.

      For me, Cellcept has been a lifesaver. I was able to go a whole year basically feeling “normal” again. And then the 2nd time, it enabled me to take care of my baby. Without it, I was relapsiing every 1 1/2 weeks and was getting so weak that I could not hold her, pick her up out of her crib, or even dress her. That broke my heart.

      I hope this helps. Please ask me anything you want. It helps me so much to feel like I can offer something on this forum. I have not experienced that before.[/QUOTE]
      Thanks so much for posting your experience Christie. It seems like you have had a real time of it with your CIDP. I am trying to learn as much as I can about all of the treatments for CIDP i.e. which drugs work best in what situations. I’m glad to read of your positive experience with Cellcept. Good luck getting pregnant!
      Laurel

    • Anonymous
      September 19, 2008 at 12:47 am

      I have kept a journal listing each and every IVIG infusion. The dose and the brand tag off the bottles. I can look back through my journal to see about drug side effects and improvements. I highly suggest keeping some kind of journal.
      I also keep a record of all my doctors appointment/topics covered/answered.I go in to my visits with my questions already written to discuss with doctor.In today’s medical world we must be our own advocate. Take a family member or a friend with you for support and to help discuss what is needed with your doctors.

      IVIG is very expensive but for me it works. I had terrible side effects for the first year-migraines/sweating/fever/rash/nausea. I’ve had 6 infusions a month for over 3 years and when it is cut back I lose ground.Changing neuro for you to get the best treatment/improvements is what is important.

    • Anonymous
      September 19, 2008 at 7:35 am

      Here is what I’ve decided. I thought all night about it. Finally took a valium to sleep…Connor lost his top tooth and was devistated…crying, said he doesnt want to go to school today. Hubby gets him ready for school b/c I leave much earlier. I wrote a note for the teacher explaining it…oh boy.

      anyway.

      I think I will make an appt for the first neuro. Even tho he wanted to “wait and see”, he WAS aggressive with the treatments he ordered. I have all of my records from him and he was thorough. There were a few notes that said he would order this or that at the next visit and never did. He also never did my liver function…and this new one did.
      Anyway…I’ll make an appt with him…bring my hubby along for backbone…and just be honest. I cant take hubby with me for at least two weeks b/c of our schedules so that will give me time to figure out what to say. I’ll tell him I went for a second opinion and am not satisfied…I dunno…I’ll come up with something.
      In the mean time, I am due for another treatment two weeks from today. I should probably keep that even tho it’s not enough for a small child. At least it’s something ? What do you guys think ?

      All I can say this morning is thank you so much …once again for your support!

    • Anonymous
      September 19, 2008 at 9:03 am

      I took Emily for a 2nd opinion & wasn’t satisfied with that dr’s treatment plan. I had to go back to the 1st neuro & I felt STUPID.

      The 1st neuro was really nice about it. He said most dr’s want their patients to go get 2nd, 3rd, 4th opinions. He said it lets the dr know that the patient really wants to get better. He said that dr’s don’t take offense to it & to just not worry about it.

      I think going back to the 1st neuro is the right decision. If you don’t like what he has to say then you find another one. You keep looking until you FINALLY find a dr who wants to treat your CIDP appropriately.

      Good luck,
      Kelly

      PS, Emily cries when she loses her teeth too. I hope Connor has a great day & doesn’t worry about that tooth.

    • September 19, 2008 at 9:39 am

      Stacey,
      So glad you decided to go back to the first doc. I have a good feeling. Can’t wait to hear that you will be getting more ivig! Have a great weekend.
      Dawn

    • September 19, 2008 at 9:46 am

      Christie,
      You are right, it is a personal decision. I too still keep cell cept as an option should ivig cease working. Everything is always on the table. It sounds like you have had a difficult road with this journey of cidp. I am happy for you that the cell cept has let you live a normal life. How wonderful it controlled things long enough to allow you to become pregnant and take care of your baby. You must be so excited to be trying for #2. You have come so far since the begining of your story, congratulations. I hope my friend Stacey can get on the path to good things too!!
      Dawn Kevies mom
      ps, google Jens story, it is about a woman near me with cidp who was down and out with cidp as well, she ended up with a stem cell transplant and is doing great today. It is an inspirational story.

    • Anonymous
      September 19, 2008 at 11:58 am

      Christie –

      Here is the link to Jen’s Story that Dawn mentioned:

      [url]http://www.caringbridge.org/il/jeno/[/url]

      (copy & paste in your browser)

      Kelly

    • Anonymous
      September 19, 2008 at 12:07 pm

      Do any of you know what Jen’s story was before she got the transplant? How often did she relapse? Did she respond to treatment?

      Thank you all for you encouraging words, they could not have come at a better time.

    • September 19, 2008 at 1:06 pm

      Christie,
      If you go to the site, you can e-mail her your phone # and she will call you back. She is really kind. When I spoke with her, she was on ivig, cell cept, steroids pp. Still would relapse, I want to say weekly, but don’t quote me. It has been a little over a year since I spoke with her. i believe she may have been in or near a wheel chair. She had the transplant at Northwestern Univ. In Chicago. Since I spoke with her, she was relapse free and seemed to be leading a normal life. She still was on cell cept when we spoke, I cannot recall if it was for rejection purposes or added insurance to keep the cidp at bay. I hope you come back often, we would love to give you encouraging words when you need them!!!
      Dawn Kevies mom

    • Anonymous
      September 19, 2008 at 1:24 pm

      My daughter has been on IVIG – 22 grams per week for the past 2 1/2 years. She remained stable, but did not improve. A year and 1/2 ago Cellcept was added. She continued to remain stable, but her last appointment which was last week, her hands have improved. We don’t know if it is the Cellcept finally kicking in or what. She has never been sick since being on the Cellcept and she was away at college last year with a community bathroom. The only thing that she has had is occasional diarrhea. She is going to start taking Prilosec for that. She has been very lucky because she has never had a reaction to the IVIG and doesn’t even have to premedicate prior to the infusions. She just had a nerve biopsy yesterday to see if they can tell from the nerve if she has CIDP or CMT.

    • Anonymous
      September 19, 2008 at 1:36 pm

      Thanks Dawn for the info on Jen.

      I am here reading these forums almost every day. There are very few threads that I feel like I can contribute to. I am much younger it seems that most of the regulars here but I have always appreciated reading all of your comments.

    • Anonymous
      September 19, 2008 at 1:38 pm

      Christie –

      I’m only 30 – so I am NOT old yet!

      Kelly

    • Anonymous
      September 19, 2008 at 1:44 pm

      True, true. I was not trying to offend anyone or anything. I am just having a hard time with my CIDP right now and am very grateful that I seem to be fitting in here a little better now

    • Anonymous
      September 19, 2008 at 1:53 pm

      I was joking with you.

      If you ask Emily how old I am she’ll tell you “My mom is 29 again.”

      Glad you are fitting in here.

      Kelly

    • September 19, 2008 at 2:07 pm

      Why do you all of a sudden suspect cmt? Did you have the Athena blood test to r/o cmt? I know a woman who is very active in the cmt community, her son has it. We discussed ivig for her son and she stated ivig is not a treatment for cmt. So if your daughter maintains with ivig it must be helping her. Good luck to you and prayers sent your way while you await the test result.
      Dawn Kevies mom

    • Anonymous
      September 19, 2008 at 2:46 pm

      When she first had problems they thought it was CMT. Had all the tests and they came back negative. No one on either side of the family has it. So we went to Mayo to get a second opinion. They thought it could be CIDP and that is when they started treatment. They are very confused because she was declining rapidly at the beginning until the IVIG – but she then did not improve. The Mayo clinic is confused now because there are things that point to CIDP and then other things that suggest CMT. They wanted to get the nerve biopsy done and then do EMGs on my husband and I to see if either of us has any problems. They do not expect to see anything with us. If it is CIDP then they feel they need to get more aggressive. If it is CMT, then we need to get her off the medication.

    • Anonymous
      September 19, 2008 at 3:20 pm

      I sure hope they find the cause and can get her treated in the right path. Not easy not knowing what is going on and certainly very frustrating for the family as well! Wishing you my best Carla!

    • September 19, 2008 at 4:53 pm

      Hey Christie!
      Glad you fit in. Any age, shape, race, etc fits in!!! About the age thing, man I must make myself sound old in my posts, I am going to have to watch that!! I am 42, Kevin is 11. I kind of don’t act my age, I like Nine inch Nails, Marilyn Mansen, Kid Rock (He’s hot!) Tool, and I’m overweight, so no wrinkles show even though I am a sun godess and over tanned. Well, with that description, you can be assured you fit in.
      DAwn Kevies mom

    • September 19, 2008 at 5:02 pm

      Carla,
      The nerve biopsy will be your definitive proof. If there is no onion bulbing, then there are no demylienations occurring, hence no cidp. Regarding the cmt testing and the genetic factor. If it does not show up in either yourself or your husband, there is a thing called spontaneous mutation. That is what they thought Kevin had and in fact is what the lady I was telling you about son has. It just happens. I apologize, I am still not clear, it sounds like there was some positive change w/ivig initially, if so, that would not happen with cmt. Kevin had a quick response to ivig, that oupled with the fact that the initial onset was about 3-5 weeks indicated that the time frame was not indicative of cmt, regarding the extent of damage and the short time it took to get there. CMT would take years to get to the parqlyzed state Kevin was.

      Since we were working with that dx., as a possibility, here is some info. It falls in the MD classification. So if you are haveing difficulty with deductables or any testing that may not be covered, you can contact the local md chapter in your area. They will assist you. Additionally, they are a great source for neuromuscular docs. there are md clinics that you can go to as well. Check your local chapters, they all vary. if in fact it is cmt, contact me and I can give you the name of the lady who is involved w/ the cmt community. Good luck and best wishes while you await the results.
      Dawn Kevies mom

    • September 19, 2008 at 5:06 pm

      Carla,
      Also, typically, but not always males are affected more often. What was her ivig regimen? Did she do the loading doses for a good period of time? How frequent? Some on the site combine ivig and iv solumedrol, Gab111 is a really nice lady who has had a bout with persistant symptoms and went that route. She could give you more info, try to pm her. Don’t forget, there are options, do not give up!
      Dawn Kevies mom

    • Anonymous
      September 19, 2008 at 6:19 pm

      My daughter was started on IVIG at the Mayo Clinic. They gave her 22 grams twice a week for 6 weeks. After the six weeks, they changed it to 22 grams once a week and she has been on that schedule for 2 1/2 years. They felt that was being pretty aggressive. I think PE will be the next option if they find it is CIDP.

    • September 19, 2008 at 9:45 pm

      Christie,

      My wife keeps expecting me to “grow up” so I guess biological age doesn’t seem to make any difference… 😀

      I too struggle with CIDP. The crawling skin, itching, tingling, burning ick comes and goes.

      I’m glad you feel like you’re fitting in with us “young” folks. 😉

      Gary

    • Anonymous
      September 20, 2008 at 12:01 am

      Christie,

      Ok, I had to look to see how old you are. 25…oh to be 25 ! I am 38…my niece is 27 and her and I are pretty close but we have different interests. I guess it’s b/c she’s healthy and beautiful and single. She likes to go out…just like I used to. But, she also has two young kids and has made me a great-aunt. At 38. 😮

      Dawn, nine inch nails ? You are a rocker. I dont much like kid rock…not sure why. I love Scott Stapp and all the old stuff, AC/DC, Def Leppard, etc…but also like country music. Crazy.

      I’m grouchy tonite…trying to get over it. Fed up.

      tomorrow I have to work a bit…that doesnt help the mood.

      well wishes.
      Stacey

    • Anonymous
      September 20, 2008 at 7:08 am

      I learned after reaching the age of 28 that age makes no difference. At one time it used to make a difference but then you get used to meeting older folks and they can actually be pretty fun being around. LOL! Hey! I am in my late 40’s and like rock and roll music. But we never to old to rock and roll! Hugs

    • Anonymous
      September 20, 2008 at 12:31 pm

      we musnt forget Ozzy and Motley crue. :rolleyes:

    • Anonymous
      September 20, 2008 at 9:14 pm

      Stacy, My wife had similar reactions until we made them go through a routine of slow starts 25/50/75 at 15 minute intervals and showed them the Rx where it said 10% solution and the patient controls the administration. They are never to exceed 75 and she has been fine since.

    • Anonymous
      September 21, 2008 at 3:15 pm

      [QUOTE=Carla]My daughter has been on IVIG – 22 grams per week for the past 2 1/2 years. She remained stable, but did not improve. A year and 1/2 ago Cellcept was added. She continued to remain stable, but her last appointment which was last week, her hands have improved. We don’t know if it is the Cellcept finally kicking in or what. She has never been sick since being on the Cellcept and she was away at college last year with a community bathroom. The only thing that she has had is occasional diarrhea. She is going to start taking Prilosec for that. She has been very lucky because she has never had a reaction to the IVIG and doesn’t even have to premedicate prior to the infusions. She just had a nerve biopsy yesterday to see if they can tell from the nerve if she has CIDP or CMT.[/QUOTE]

      Reading all of these threads and checking on things for my husband. Question:
      What does cmt stand for?

    • September 21, 2008 at 5:12 pm

      Charcot Marie Tooth, MD related, usually genetic but can occur as a spontaneous mutation. EMG,NCV wise, it looks the same as cidp, as this was Kevin’s second dx which I refused to believe because Kevin’s debilitation level occurred too quickly, would have taken years if it was cmt. L/P confirmed cidp. It is tested for via a blood test sent to athena labs.
      Dawn