New IVIG Side Effects

    • Anonymous
      March 4, 2011 at 6:56 pm

      I have CIDP and have been on Imuran and IVIG since 2002. Now I am getting new side effects (in addition to the migraines I have been getting for a long time).

      I get IVIG 5 days every 12 weeks. In the last year I have been vomiting on the 4th day (not the 5th) and this round my Blood Pressure has been up before and after treatment on days 3-5, even after we lowered the rate on day 5. I am also getting “hot flashes” which I haven’t had for years.

      Has anyone had this problem? Any ideas for preventing this? I appreciate your help!

      Shergie

    • Anonymous
      March 4, 2011 at 10:20 pm

      Since 2002 has your cidp symtoms improved after all this consistant IVIG treatment?

    • Anonymous
      March 4, 2011 at 10:55 pm

      [QUOTE=mongo]Since 2002 has your cidp symtoms improved after all this consistant IVIG treatment?[/QUOTE]

      Yes. I am much better than I was when I was diagnosed. I leveled off until my Dr. tried to decrease my Imuran, at which point I went down hill. I am still not entirely back to where I finally was – Grrrr…

      I am really concerned about these side effects.

    • Anonymous
      March 5, 2011 at 10:58 am

      I was on ivig for years and became allergic to it. about every 6 weeks, after 3 days of 40 g a day, headache and high BP, really high.

      I found a doc who would give it to me , 40 g one day every 2 weeks..
      helped me maintain better and the problems went away..

      good luck,
      peace and strength to ya..

    • Anonymous
      March 5, 2011 at 11:06 am

      OK, so what is a bolus? That’s what I wanted to know when my Mayo clinic specialist’s notes said he preferred not to use a bolus. So, I looked it up.

      In my own words, a bolus is a single large dose of medication intended to raise the desired medication concentration rapidly to a very high level.

      Consider the comparison. I was taking 3 days IVIG every 3 weeks. Mayo put me back on 1 day every week. What’s the difference?

      Some might say, not much, or, none at all. Well, in fact the difference, from my perspective, is that during the bolus I got worse during the 5 months I was using the bolus treatment.

      After I went back on 1 dose every week, I improved. Improved what? The grip strength in my right, and weakest, hand improved from average 7# to 8#. May not seem like much, does it? Yet, that is a 14% improvement, isn’t it? Left hand only improved 4%. But, it had not declined as far either.

      You asked for ideas preventing your issue(s). My idea is that I would abandon 5 days every 12 weeks and ask for 1 treatment, infused very slowly, every two weeks.

    • Anonymous
      March 5, 2011 at 11:40 am

      [QUOTE=soapy]I was on ivig for years and became allergic to it. about every 6 weeks, after 3 days of 40 g a day, headache and high BP, really high.

      I found a doc who would give it to me , 40 g one day every 2 weeks..
      helped me maintain better and the problems went away..

      good luck,
      peace and strength to ya..[/QUOTE]

      Thank you, Soapy and Yuehan. I will pass this on to my Dr. It is certainly worth a try!

      Shergie

    • Anonymous
      March 6, 2011 at 6:28 pm

      IVIG has a life of about 42 days – meaning it stays in your system for that long. You are getting it every 12 weeks…that’s every 84 days.

      I would tend to believe your dr’s dosing is not appropriate for CIDP. CIDP’ers tend to need a consistent dose of IVIG. Waiting for the IVIG to leave your system will not help….it will make your symptoms worse.

      In my opinion, it is much safer to have treatment every other week than it is to have it all at once every 12 weeks.

      Do a search on the forum for Dr Dyke out of Mayo in Minnesota. There was a link to a webcast where he talked about how he treats CIDP. It might be helpful to you.

      Kelly

    • Anonymous
      March 6, 2011 at 8:46 pm

      Lots of things come into play?
      Dosages for those days and how long they took? What were the rates, and how fast was the IVIG administered? IF given too fast? You can get one whopping headache called ‘aseptic meningitis’. I’ve had one of these? And, I DO NOT plan on having one ever again! Often combos of tylenol and benedryl in varying doses can and do help many side effects…But, not all.
      Read up on these IVIG products and cruise down to the ‘side effects’:
      URL [url]http://www.gammagardliquid.com/prescribing-information.html[/url] URL and…
      URL [url]http://www.talecris-pi.info/inserts/Gamunex.pdf[/url] URL
      Next is likely the recalculation of dosing for a shorter period of time but adequate enough to meet your needs… Maybe? It might benefit you to see another neuro at a higher level? [Such as a teaching institution] to reasses your diagnosis, and further your treatments… I’ll bet, that your current neuro will cede to any opinions that 2nd opinion can provide and likely be far less ‘conservative’ [or pecuniary- aka counting pennies] about this…
      That additional level of ‘approval’ can get a neuro off his whatever and get into gear. In a way, it gets him off the ‘hook’ in terms of some liabilities as well? It can also give the current guy a door into further education and contact with a more up-to-date facility.. win-win for them? And, for you!
      I agree with Kelly Yeuhan and Soapy that the ‘status quo’ just isn’t working right?
      Good luck and keep at it! I have faith that you will get it right and soon! Do keep us up to date on things as they go along… Hope always!