Cidp, Risk In Ivig Of Hiv And Hepatitis

    • Anonymous
      November 12, 2007 at 12:39 am

      Does Anyone Know What The Risk Are For Getting Hiv And Hepstitis While Getting Ivig? My Dr Told Me That There Is No Risk In These Disease’s But I Don’t Trust It. I Have Had Cidp For 2 Years Now And My Dr Would Like To Put Me On This. Please Help Me Put This Into Focus, I’m Scared Out Of My Mind. I Want To Get Better, But At What Cost?

      Lameka 37 Years Old, Two Children,husband Don’t Understand

    • Anonymous
      November 12, 2007 at 7:39 am

      The risk of getting HIV or Hep is HIGHLY, HIGHLY unlikely. These blood products are screened and tested [B]extremely [/B]well before being submitted. With the amount of people getting IVIg in the GBS/CIDP community we would have known immediately if this had ever happened, and believe me, the Foundation would have been the first to make us aware of this should a case have happened.

    • Anonymous
      November 12, 2007 at 8:42 am

      Hi Lameka, Welcome to The Family. We understand your concerns, as Ali said the blood is tested several times and using several different tests for all types of diseases before being used in any other way. it is sometimes tested before being collected, if not then its tested before anything else is done with it. It is perfectly safe, cidp isn’t the only use for ivig.
      Go get started with your treatments and don’t stress about the ivig. Your family needs you at your best. Feel free to ask all the questions you have or just vent when you need to. We understand what you’re going through. Take Care.

    • Anonymous
      November 12, 2007 at 9:42 am

      Ok, I’m going crazy with fear! I totally hate this disease! I was a in the navy
      and I had a very busey life, now all I do is sleep all day long unless my husband is home. He encourages me to go outside and have fun. Why do I feel like I’m going to die? I lay in bed at night thinking about the different parts of my body that I felt strange feeling on today, saying “oh my god,please dont let my face start to feel that striking pain” Also I feel like a freak when I go to Walmart or any other store or mall, I get out of the car with my handicap sticker in the window and I have had people write down my liscense plate number. People lookat me like im a freak when I’m ridding in the scooter the VA gave me because I don’t look sick on the outside. I know what they are thinking. All people see is an overweight black women ridding a scooter,and “she’s just lazy” people just stare at me! I’t makes me so sad.

    • Anonymous
      November 12, 2007 at 9:50 am

      First off I would like to welcome you to the forum; I hope you post often for support. Have you ben seen by a neurologist? If so, you should have already been given treatment by now, IVIG just might bring you back to normal, or almost normal. Secondly, the feelings that you are having are completely normal, we have all been there, we all want our old, healthy bodies back.

      As to people staring, I go through that all of the time, even though I use a cane to walk. They do not see the leg braces under my pants, feel the pain in my feet, or know what it is to have weakness in the knees & loss of balance. But do, & I use my handicapped license plates as they are supposed to be used. My son is in a wheelchair (age 26) & does not use handicapped spots as he said it is easier for him to push his chair than for people like me to try to walk; God bless him! Anyways, feel free to post any & all of your questions…

    • Anonymous
      November 12, 2007 at 10:31 am

      My 6 year old daughter, Emily, has CIDP so I researched IVIG extensively. The donors selected for making IVIG are screened extremely carefully, which is one of the reasons why IVIG is expensive & sometimes hard to come by. It is regulated by the federal government to ensure it’s safety.

      The plasma goes through an extensive cleaning process to remove any unwanted illnesses or possible diseases. IVIG has been used since around 1984. In 1989 there was 1 batch of IVIG which containted Hepatitis. After that batch was discovered the cleaning process was totally revamped & since then there have been NO reports of anyone contracting ANY disease from IVIG.

      There are risks with any medication. I personally feel that IVIG is the safest medication to treat CIDP. The side effects are much less than with steroids or with other immuno-modulators.

      The most common side effects from IVIG are headache, nausea, chills, and sometimes vomitting (usually from the headache). Basically, it’s flu-like symptoms.

      There are steps to making sure that you don’t suffer from these side effects. The day before starting your infusion make sure to drink LOTS of water. It is extremely important to be well hydrated. Make sure to be premedicated before starting your infusion. Most people use Tylenol or Motrin and Benadryl. There are other combinations used as well though. Make sure to stay hydrated throughout your infusion & usually for 24 hours after – just to be safe.

      There are different brands of IVIG and you need to find the one that agrees with your body the best. Sometimes you get it on the 1st try & other times it’s trial and error.

      Some brands of IVIG contain sucrose which can cause problems with your kidneys. So if you have a history of kidney disease then you would want to avoid those brands & use one that does not contain it. Emily uses Gammaguard & it does NOT contain sucrose. Also getting monthly or bi-monthly blood draws are usually recommended – just as a precaution.

      You can get IVIG at a hospital, infusion center or at your home, with a homecare nurse. My daughter gets her treatments at home. The nurse stays with her the whole time & monitors her blood pressure, temperature & heart rate throughout the infusion. She gets 20 grams per infusion & it usually lasts about 2 hours 45 minutes. Her infusion goes pretty quickly though. Some people need a slower infusion to reduce the side effects.

      As for people staring at you when you are in your scooter…screw ’em! You need to live YOUR life & if part of living that life means having to ride around in a scooter then you need to do it proudly. You are out there & still living. You aren’t letting this disease get you down. You HAVE to continue to live as normal of a life as possible. Who cares what strangers think of you! They don’t know you so it shouldn’t matter. You do what makes YOU happy. Many people need the assistance of scooters to get around. You aren’t the only one & if people want to stare then it’s their problem….NOT YOURS!

      Good luck & don’t let others get you down!

    • November 12, 2007 at 10:35 am

      Hi Lameka,

      I do not have this illness, my ten year old son does. Since he has been sick, I have gained a new understanding for people with disabilities. Especially people like you, my son , and others on the forum. Looking normal makes it even harder. My husband does not even understand sometimes that my son is tired. He can’t go for a 5 mile bike ride, he can’t walk around the Bahamas and then go snorkeling. Until one has experienced illness, they cannot understand. I understand now, I used to be one of those people that wondered when a perfectly healthy looking person jumped out of the car form the handicapped spot. I am not any more. Don’t worry about what others think. Just focus on safely getting out of the car and enjoying your time at the Walmart.

      Regarding ivig, it is a miracle drug! It has given my son his life back. Now we know he will need it regularly and it will become a part of his life that allows him to have his life back. you seem to be worried with the risks of ivig. The product is screened again and again, washed with detergent agents and processed over and over. As with anything in life, there is a risk, but the benefits far out weigh the risks. Your family can have you back!! You have no choice but to grab this illness by the reins and take control of it, don’t let it win. You can get out of that power chair, but the longer you wait for ivig, the more damage that occurs.

      Are you seeing a va doc., are you happy with the care, are they willing to do ivig? Can you see your own doc through your husbands insurance? Have you seen a neuro?

      Many doctors are not familiar with this diagnosis. Do not be afraid to direct them to the internet. Call the foundation and request that a packet be sent to you. There is a wonderful thick white book that is like the rule book of gbs/cidp. Take care and private message me your # if you would like to talk.

      Dawn Kevies mom

    • Anonymous
      November 12, 2007 at 11:01 am

      I agree that you definitely have to find the brand that works for you with IVIG. I had two infusions about 1 1/2 years ago with one brand and it went fine. Then I had two more of another brand and both times it gave me meningitis. It is a rare side effect but is possible. As others have said, with anything there is a slight risk. My understanding is that most brands now do not contain sucrose anymore, according to my neuro. I am getting ready to have another IVIG in the next month and we are going back to the brand that originally worked for me. SO I should be fine. No guarantees but we are very hopeful.

      Don’t let others bother you. I also used to wonder when I saw a seemingly healthy person get out of a car in a handicapped spot, but now I know. Now I only notice if they don’t have a handicap placard and park there.

      Take care of yourself first and foremost.

      Patricia – ziggy’s mom

    • Anonymous
      November 12, 2007 at 11:04 am

      Lameka, just wanted to say hello. I am realatively new to this forum and do not post much but I justed wanted to let you know everyone that posts here is full of wonderful info and encourgement. I had 15 treatments of IVIG and fell pretty confident that it is a safe product because of the screening process they have in place for it. As far caring what people think I say screw them! It has taken me awhile to get to this point but now I really do not care when people see me walking with a cane or riding around the store in a scooter.
      Good Luck

    • Anonymous
      November 12, 2007 at 2:59 pm

      I want all of you to know how much I appreciate your support. I don’t know any of you personally, but I totally love you all.hahahh..I really needed to hear some positive feed back, because my husband just can’t or he wont understand how I can sometimes sleep 12 hour or more a day. Thank You for for explaining the IVIG screening process, my doctors have been begging me to try this. I wish I had one of you wonderful supportive ladies to be there with me as I will have to do this alone. My children have to go to school and my husband has already missed so much work because of me. I would really love to speak to someone over the telephone. If anyone is interested in this, please send me a message and we can go from there. 🙂

    • Anonymous
      November 12, 2007 at 3:47 pm


      This site has been wonderful. Without it I would be lost! I have CIDP and have had all the same questions and fears as you do. Ask away cause someone will be able to help in some way.

      The IVIG thing is very scary the first couple of times. Make sure you drink lots of fluids the day before and the days you are getting IVIG. My doc told me to consume lots of caffeine so I treat myself to a mega chocolate bar while getting the IVIG.

      As for being alone during the IVIG it is pretty busy with nurses checking your blood pressure, heart rate, and temp all the time. If possible ask for a bed and rest. You might get flu like symptoms afterwards. Rest and drink lots of fluids.

      Pre medicate with Tylenol and benadryl. I take it after the IVIG and the next day. Once I didn’t and I was very sick!

      If you have any more questions just ask!

      Stay positive and take things one day at a time!