CIDP, Shots, and Travelling to India

    • Anonymous
      April 16, 2007 at 10:02 pm

      Hi folks,

      I have been living with a subdued case of CIDP in Toronto for the past couple of years. I’m having a great response to IVIG and have treatments every five and half weeks. I’m not only back to work but have been promoted twice! My latest promotion means that I will likely be asked to travel to India on a short stint (about 1 or 2 weeks) to meet my new staff. I am worried about getting the standard shots (e.g., malaria) that are strongly suggested for travelling to India. Has anyone had any experiences with travelling to India from North America with CIDP? Has anyone had any adverse reactions to shots in preparation for a journey abroad? Your stories may help me decide whether I should stay home or explore new territory.

      Thanks in advance for your advice.

      Serena’s Mom–Michelle

    • Anonymous
      April 17, 2007 at 1:10 pm

      Michelle,

      I dont have CIDP, but GBS. I know your question covers all the shots you have, but I would like to address the maleria issue. Could you possibly take the tablets instead of the shots? I had taken maleria pills many times after GBS. I am from South AFrica, and every year, before leaving S.Africa (my parents still do)we would go on vacation to a maleria belt. It is sugested that medication is taken when visiting this region. However lately my parents (and me) dont take the tablets. Even though it is in the African bush, our chalet is modern, with aircon, and the surrounding gardens are well kept, and I believe sprayed every now and then for mosquitos. I personally dont have any issues with taking the tablets, and while it is possible to get maleria from a mozzie bite, I am not overly worried about it. I think it may very well be a matter of familiarity makes us lax, and you probably would have to do what you feel would be in your best interests – which is a very difficult task. Honestly, I’m not sure what shots I would be prepared to take if I was going to India, but maleria would not be one of them, rather tabs. While the it is unlikely to have anything ‘flare’ up due to the shots, there is the slightest possibility of it doing so.
      Obviously when going, you would do the usual things to avoid certain things, like, only drinking bottled water and washing toothpast out of your mouth with the bottled water too. this may seem overly cautious, but many people are not used to other contries water and are often adversly affected by it. We have mission teams that go to India on a regular basis, and ‘do the bottled water’ thing. I am not at all suggesting that India’s water is tainted, its just that some are more sensitive when drinking water from other places.

    • Anonymous
      April 17, 2007 at 2:46 pm

      I would not EVER take an immunization after having CIDP. EVER!

      My daughter is 5 and she will not ever get another immunization. It plays with your immune system & could trigger a relapse.

      It sounds like you are doing very well with your treatments. Why jeopardize that?

      I’m not familiar with alternatives but I would look into the tablets that Ali suggested.

      Is there anyway to video conference with your new employees? Maybe you could explain your situation to your employer. Tell them that you are doing VERY well with your illness but you do not want to jeapardize your health or your job with getting immunizations.

      Good luck,
      Kelly

    • Anonymous
      April 17, 2007 at 4:45 pm

      Although it is probably possible that an immunization could make your immune system more active, and make your CIDP symptoms worse as a result, it is far more likely for this to happen as a result of catching scarlet fever or hepatitis or malaria. Have a talk with the doctor in charge of your treatment. So far I have not had a clear answer from either my neuro or my GP on the subject of flu shots, except for a variation of the opinion I just conveyed to you.

      IVIG infusions apparently may undermine the effectiveness of immunizations, so this is another thing to ask about. If that is true, it may be that there is no point to getting shots.

    • Anonymous
      April 17, 2007 at 7:29 pm

      You guys get to travel? I have not seen my family in two years because my doctor won’t let me travel to see them. What if someone is sick on the plane, you’ll get sick? That 12 hour drive won’t be comfortable for you and could make your pain worse. What if I got sick down there and no one was able to take care of me? I feel so left out. Although as I am reading, I am darn lucky that I haven’t experienced any of the paralyzations, ventilators and worse symptoms than what I have experienced.

    • Anonymous
      April 17, 2007 at 9:23 pm

      Thank you everyone for your advice. I didn’t know about the possible tablets or that IVIG may hamper the effectiveness of immunizations.

      I spoke with my neurologist on the topic, and he said “CIDP cannot kill you, but the diseases that you would be exposed to could…therefore, if you have to go, get the shots.” Strangely, in my case, he was much more confident about me getting pregnant without significant relapse than he was about travelling abroad and getting the requisite shots.

      If I end up going and having the shots (or getting pregnant for that matter), I’ll post again and let everyone know how it goes.

      Thanks again.

    • Anonymous
      April 18, 2007 at 12:05 am

      Kelly, I have traveled in the 3+ years I have had GBS, including twice to GBS Foundation events in Cleveland and Phoenix. If you are stable and feel well enough I wouldn’t let GBS/CIDP stop you. Speak to your Neuro. he/she will be the best to ask.

      Jerimy

      [quote=kel0317]You guys get to travel? I have not seen my family in two years because my doctor won’t let me travel to see them. What if someone is sick on the plane, you’ll get sick? That 12 hour drive won’t be comfortable for you and could make your pain worse. What if I got sick down there and no one was able to take care of me? I feel so left out. Although as I am reading, I am darn lucky that I haven’t experienced any of the paralyzations, ventilators and worse symptoms than what I have experienced.[/quote]

    • Anonymous
      April 18, 2007 at 1:13 am

      Kelly, you mustn’t live in a bubble! As time has gone on, I have traveled more and more. I am careful to take lots of Vit.C 2-3 days before, during and 2-3 days after. Have you been told not to go to the grocery store? That’s germ haven! My parents live 12 hrs. away from me but we usually drive there twice a year. I don’t know how long since you had the GBS event or how “stable” you are now but you have a good idea. After all, you are the one living in your body 24/7!! There are alot of “what ifs” in life but we can’t stop living ~ that just causes one to shrivel up!

      I wish you well in taking on a new adventure 😀

    • Anonymous
      April 19, 2007 at 7:04 am

      Hi Michelle,
      I cannot comment about other vaccinations, but when we first went to Thailand, we were told [U]not[/U] to be vaccinated against malaria. First of all, the vaccination does not guarantee protection. Secondly, you may fail to get help when you need it because you think you are safe. Also, there are several strains of malaria and only one is seriously deadly. That strain is more often found in Africa, far less often in India or S.E.Asia.
      – Carol