Suprise, Suprise, Suprise

    • Anonymous
      June 26, 2012 at 10:04 pm

      I got IVIG approved at a reduced fee. Thank you Wal-Green’s, thak you gammaguard, and especially, thank you to my Dr. who did not give up and continued to work FOR me to get this treatment.

      If you remember, I could not afford co-pays that were first offered. The three sets of folks listed above made it happen for me !! Now , let’s see if it works and helps me feel better !!

    • June 26, 2012 at 11:16 pm

      Best of luck to you! It is truly sad that financial barriers exist to treating this illness in so many. Let us know how you do!

    • June 27, 2012 at 1:32 am

      awesome news Dick! Nice to know people still care about others

    • Anonymous
      June 27, 2012 at 2:42 am

      I’m happy this is working out for you. Does this mean you’ll stop the predisone?
      Let us know how you’re feeling once you get the IVIG.

    • Anonymous
      June 28, 2012 at 1:19 am

      I am reducing prednisone to 20 mg daily and I see Dr. after the 4th of July. I have had 2 sessions so far, Mon. and Tues. This session is 5 days and then evaluate.

    • Anonymous
      July 1, 2012 at 1:02 am

      Congrats Dick. It’s a shame I just had to throw out 7 bottles I never used. My allergic reactions made me have to stop my infusions and had nobody to pass it on to. It was in my fridge for months. Our healthcare system sucks.

    • Anonymous
      July 2, 2012 at 4:46 pm

      I had my last infusion the other day. I thought I was tolerating everything fine until the headache started. It started in the neck like a tension headache, then went to both eyes and then exploded. Dhiarea (never could spell that one) and vomiting, temp of 102. It was an exercise in brutality and torture for 30 hrs. Now it is down to a dull ache, no temp, and I can eat.
      4 days of no problems, and then the last day got me. Oh well…

    • GH
      July 2, 2012 at 8:38 pm

      Dick, it’s possible that the cause was something else entirely. It sounds more like food poisoning.

    • Anonymous
      July 7, 2012 at 4:21 pm

      I got stung by a bee Sat evening prior to the reactions. Since then I have had intermittent headaches and a bumpy rash like reaction on my hands, feet and behind my ears. It is just bumps until I heat the skin either by washing, showering, or by being outside in this cussed heat.
      I don’t know if the bee sting kick-started something, or whatever. The stomach stuff passed as quickly as it started, and the headaches and body reaction has been going on for a week now.

    • Anonymous
      July 7, 2012 at 4:43 pm

      Dick is sounds like a nasty allergic reaction to the bee sting. I have similar reaction when I’m stung. Benadryl helps lots. Sounds like you need to buy yourself an Epi Pen will adrenaline to have on hand just in case for future reactions. I always have one around–about $100 and unfortunately usually expires in a year.

    • Anonymous
      July 9, 2012 at 9:36 pm

      How are you feeling after your 5 day IVIG treatments? Do you feel the IVIG has helped in certain ways??
      I’ve had unfortunate reactions to IVIG that made me be in bed for days with migraines, nausea and profuse sweating for the first year. I realize now a lot of it was because the rate of infusion was too high for me. I can only tolerate 90 flow rate-no higher.
      Days of 100* plus here for 2 weeks.
      Take care and let us know how you are.

    • July 9, 2012 at 11:58 pm

      hi Dick,
      That is exactly how Kevie was every month for two years until we finally started breaking it up into 2 days every two weeks. It cut the sick feeling in half. Zofran works for the nausea but it also can cause headaches. We had the rash only the first 3 months then it stopped, it looked like prickly heat. One time we also had little blisters on his palms and feet. Do you remember Gabrielle? She had good luck with a solumedrol infussion post treatment. I am surprised the prednisone does not help you with the reactions. Is it possible you could bear with the reactions for a couple of more months of loading doses and then move to a maintenance dose? Good luck to you, keep us posted!

    • Anonymous
      July 10, 2012 at 10:19 pm

      Forgot to say I had 3 infusions back to back and when I separated them the side effects diminished quite a bit. Five days in a row of IVIG when you’re not used to it can kick you good. I hope this works well for you and you can start having IVIG on a regular basis.

    • July 11, 2012 at 2:21 am

      glad to hear you got it covered!!! As for the reaction – i had a VERY similar reaction to that.. I was great after the first day of my loading dose and mild headache the second and then in the middle of the night the 3rd day woke up with an awful headache, spine hurt, body aches all over .. I also had the bumpy rash on my palms, feet, back and trunk and a little behind the ears as well. they actually did a lumbar puncture on me and found I did have meningitis (aspectic from the infusion).. it was very rate dependent though – I have gotten it three times in the past year, but never as bad as the first.. the rash on my hands and feet usually is only minimal after each infusion now and a bit itchy on my legs (looks like ezcema).. I also get upper abdominal pain and nausea the first day of the infusion.. but hey!! it works.. soo i’ll take it! 🙂 good luck to you! Hoping you feel better soon and notice a great difference!