New to CIDP w/IVIg atypical side effects?

    • Anonymous
      December 16, 2008 at 11:14 pm

      Hello everyone,

      I am new to the forum and was diagnosed w/CIDP in 10/2008. I’ve actually had symptoms of the disease since 6/2006, but didn’t get the “official” diagnosis until recently.

      I started IVIg (Gamunex) 12/1/08 and had to stop after the second day as I was experiencing atypical side effects. The infusion center nurses and my neurologist hadn’t seen my particular side effects before and I’m wondering if anyone else has experienced them or has heard of others who have.

      I should mention I’ve racked up a few autoimmune disorders/diseases: Type 1 diabetes (25 years), Hashimoto’s (10 years), ITP – low platelet count (3 years). However, I was given clearance by my endocrinologist, nephrologist, and oncologist/hematologist for the IVIg treatment.

      The initial IVIg load was to be given over 5 days (30g/30g/30g/30g/20g).

      Day 1 – received 30 grams over a 4 hour period. Started feeling “parched” and a bit spacey toward the end of the 4 hours, even though I hydrated throughout the treatment. Was given IV bag of saline. Definitely felt blood pressure go up (I’m a 90/60 kind of gal). I felt weak, but could walk to the car. My husband had to drive me home. By the evening, I was really parched and was drinking a few glasses of water an hour. Didn’t really sleep well b/c of getting up to go to the bathroom every hour or so.

      Day 2 – Had a dull headache so took 1000 mg Tylenol before treatment. Was to receive another 30 grams over 4 hours. Made it about 3/4 way thru treatment before started shaking, and having chills. Again, had hydrated thoroughly during the treatment. Was given 1/4 dose IV benadryl. Needed another 1/4 dose, which knocked me out for about 1 1/2 hours. Given bag of IV saline. Treatment stopped. Husband drove home. Throughout evening, was “parched”, but continued hydrating. No appetite. Trouble focusing and concentrating. Also, had another bad round of uncontrollable shaking and chills. Took 1/4 OTC benadryl which at least let me sleep.

      Day 3 – Plan was to premedicate with tylenol and benadryl. Was given 1/2 normal dose of IV Benadryl and had reaction to that. Felt cold, had uncontrollable shaking, and then slept for 2 hours. Sent home by neurologist with instructions to take day off and to come back on Thurs if I was feeling better. Basically, felt “drugged” that afternoon. Was having trouble focusing/seeing things. Just wanted to sleep. Very weak. No appetite. Spacey.

      I got an emergency appointment w/neurologist on Thurs b/c I was so out of it. The thirst, shaking, waves of nausea, spaciness, lack of appetite continued and I didn’t feel any better. Blood and urine work-ups were done (all normal).

      Felt better Friday, but Saturday, I felt worse. Paged neurologist and internist, who referred to Urgent Care for evaluation (all blood/urine labs were normal) since the Thurs labs were not yet back.

      It has just been in the past 5 days that I have felt like my “pre-IVIg” self. Seems to me this is extreme, considering I had about a third of the treatment dose.

      I’m meeting with the neurologist tomorrow to discuss trying IVIg again (maybe I need a lesser loading dose and/or much much slower infusion rate?). I’m really reluctant to try it, since I felt horrible for about 2 weeks. I guess I’m trying to understand if these symptoms and the length to experience them is “normal” or not. If so, then I’ll be better able to plan the treatments around my husband’s and 4 y/o boy’s schedules. I’m not a good candidate for the steroids or the immunosuppressant drugs. Not sure about PE, and my hematologist has suggested Rituxan as a way to help the immunological attack that is going on.

      Any thoughts, suggestions, or experiences are welcomed and appreciated.

      Thanks a bunch,

    • Anonymous
      December 17, 2008 at 9:23 am

      I’m guessing that the 1st 2 days you did not get premedicated? That’s a big no-no in the world of IVIG infusions, especially if it’s your first time.

      The 1st change I would make would be getting a full dose of Benadryl & Tylenol (Motrin or Aleve work as well).

      Then I would suggest slowing down the infusion. My daughter (7 years old has been getting IVIG for almost 3 years now) had infusions of 30 grams. Her infusions go pretty fast & the 30 gram infusions took 3 1/4 hours. She normally gets 20 grams & that is 2 hours 45 minutes long.

      I would also medicate again right after your treatment with Benadryl & Tylenol (Motrin or Aleve).

      If you are getting a loading dose it is sometimes recommended that you medicate around the clock to ward off any side effects.

      Some dr’s will do a loading dose every other day for females. This may be something you want to talk with your dr’s about as well.

      Make sure you start hydrating 24 hours pre-infusion & continue for 24 hours post infusion.

      Most of the symptoms you described are normal with IVIG. The shakes, nausea & lack of appetite are normal. Those are the flu-like symptoms people speak about. The thirst is something I’m not familiar with but others may know about it. The spaciness could have been from the Benadryl. Or I imagine it could also be a part of the flu-like symptoms.

      And lastly, you could try a different brand of IVIG. Gammunex is a newer IVIG & is the latest & greatest but it just might not be right for you. Gammguard (do the liquid – NO powder!) is a good IVIG. It was the preferred brand as people have reported fewer side effects with it.

      You say that you aren’t a candidate for steroids but could the dr’s give you a low dose before your infusions? Some people who have reactions to IVIG will get a low dose & it helps with the side effects.

      I hope that helps and good luck!

    • December 17, 2008 at 10:17 am

      Sorry to hear of your problems. My son suffers GREATLY from infussions. He is 11, 12 tommorrow!! He has been getting ivig for 2 years and 3 months. Here are some things we have learned along the way.
      We start the pre-meds as soon as the nurse walks in the door, 2 reg tylenol (stronger than 1 ex str. tylenol) 1 benadryl, (as an adult, you could take 2 if needed) and 2 hours later so that you always have an overlap, we take an aleeve. The tylenol/benadryl are every 4-6 hours, the aleve, every 12 hours. MOST IMPORTANTLY, we do this around the clock, 24 hours FOR THE FULL AMOUNT OF TREATMENT AND DAYS POST! Another immportant suggestion, ask that the flo rate be ramped up slowly and spread out longer. For instance, Kevin would start out at 10,ml for some time, then 15, then max out at 39. Now, he maxs out at 50. In the begining, a 25 gram infusion would be 6 hours and 40 minutes. After 2 years, it just recently was increased and 25g takes about 4 hours and 40 minutes.
      Some patients get sloumedrol prior to the infusion as a premed, not a dose used for actual treatment of the cidp, but a small one to help with reactions. diabetes is a consideration with steroids, talk to your doc. As mentioned above, switching brands is an option. Gamunex is supposed to be the easiest on a person, but as mentioned, it may not be for you. We use Gammaguard liquid. Having diabetes, it is important that you make sure the ivig you use does not contain sugars!!!
      Most people DO in fact suffer reactions, as time goes by, they lessen. Kevin used to have the fever, chills, puking, total darkness migrane, etc. Now for the most part it is a migrane to a headache at about a 6 on a scale of ten. It does get better.
      Dawn Kevies mom

    • Anonymous
      December 17, 2008 at 2:23 pm

      I get that unbelievable thirst too – I can’t drink enough to stay hydrated. Some of that is the benedryl – it’s going to dehydrate you a little but it’s better to take it and suffer less “flu-like” symptoms. I get shakey and in a brain fog too – if you think about it you are pouring this syrup like stuff into your body made of lots of people’s antibodies. So not only does your body have to process the syrup (for which you need lots of fluids) but also with all those people’s antibodies floating around and your antibodies floating around – it’s mass chaos in there until your immune system stops producing antibodies and things calm down. It’s like getting the flu all of a sudden – the same feelings, but you aren’t really sick with the flu. All your other side effects I also get to varying degrees, some infusion rounds it feels like I’m a duck that’s been sucked through a jet engine… other rounds I have no side effects at all, or they are just mild chills and nausea. Listen to the Mom’s on the forum here, they’ve got the infusion thing down. Take it slow and easy – eat oatmeal for the nausea, use a heating pad for the chills and a cool pack for the sweats, take the benedryl (or two!) and be happy if you can sleep through the infusion and side effects. 😉


    • Anonymous
      December 17, 2008 at 10:08 pm

      I echo the others suggestions. Especially premed with tylenol and benedryl, and repeating it for any flu like symptoms.

      I have had all of the symptoms you indicate, except until recently my BP would plummet. Additionally I have had nausea, diarrhea, vomitting, and migranes.

      For chills and shakes I have piled on the blankets and used a heating pad, worn hats and gloves.

      For GI stuff I find pepto helps me greatly.

      For the extreme thirst I find i must pay attention to hydration and electolyte levels for 2 days before and after and infusion. I like E-Lyte electorlyte concentrate. It is often available through natural foods specialty stores of pharmacies, of online.

      I eat hot brown rice cereal most infusion mornings, and bland easy to digest food throughout the day.

      I do sleep much of infusion day form the benedryl and from the foreign proteins that my body is processing. If I sleep on infusion day, I recover better.

      Also, sometimes with a new batch of ivig I will have a harder reaction, the first time and then do better following days.

      I did my loading dose over 4 days, with the first month and then followed with one infusion per week, 4 per month.

      The first time was really exhausting. By spacing out doses over the month, things got easier, and my recovery time was shortened.

      I also agree with the others abt finding the brand of ivig that works best for you.

      Like you, I am not a good candidate for steroids due to multiple autoimmune diseases. I have made wonderful recovery of function in the past 20 months. I wish the same to you!


    • Anonymous
      December 17, 2008 at 10:59 pm

      Julia: I wanted you to know of my experience with IVig.
      You said you got Saline with your Gamunex. Is it really Saline or did you mean Dextrose?

      They SHOULD NOT be giving you SALINE WTIH GAMUNEX! It’s in the literature that these two are not compatible together so simply change to DEXTROSE.

      Initially, my Home health nurse (new to CIDP and IVig) gave me Gamunex IVig with a bag of Saline, without pre-meds and started the rate at 70 moving up to 90 or so. My veins are supposedly small and I ended up having the shakes, a severe migraine, arm pain, exhaustion, etc. The second nurse, caught the saline incompatibility thing and got me switched to dextrose. (I’ve never had a problem with the Gamunex).

      I now get Gamunex IVig with Dextrose and I always premedicate with 25mg of benedryl and two tabs of tylenol. The benedryl lowers my blood pressure and I get very sleepy but that’s ok so I only take one tablet because that’s all I personally need. I try to drink a lot of water the day before my IV and I have a pitcher of water for the day of the IV which I drink throughout the 5 hour period. (I think the Benedryl dries me out and makes me thirsty)

      I leave my IV out (of the refrigerator) to help warm it up a little so it won’t hurt so much going into my hand vein. I wear warm clothes. cover myself with a blanket and have a heating pad on my arm as it always turns icy cold with the IV going in.

      My IV rate starts used to start at 35 but I’ve worked it up to 60 and remains there since whenever I’ve tried to increase the rate higher than that, the pain in my vein is unbearable so I can always expect a 5 hour treatment.

      I’ve been getting IVig’s for a year and have moved from the initial bi-weekly to once every 8 weeks now. I just got the ok to move it from 6 weeks to 8 weeks so I’ll see how that goes and I am extremely excited about that!

      It all has gotten better, the side-effects are minimal and the results from the IV’s have been remarkable. I am so grateful that I don’t get migraines anymore as these IV sessions used to knock me out and I needed a full second day to recover. It took me a few months to tolerate the whole IV thing and now, I am good to go the next day. I also think my own attitude affects my progress. When it was all so new and scary I was tense and needed so much recovery time. Now, I have experienced such positive results and relax through the process as best I can.

      Give yourself time to get used to it all. It is a process.

      I wish you well.

    • Anonymous
      December 18, 2008 at 12:19 am

      Hi Julia,
      I am also a type1 diabetic, with multiple diagnosises and tried getting IVIG two years ago and due to similar described experience by you and others, I had to stop. I tried all of the suggested pre-hydration and tylenol/benedryl routine but still did not do well. I have finally settled on the immunosupressant Methotrexate with some success. If you want to private post me, feel free. I wish you the best.