IVig scheduled in two days, do I need it ?

    • Anonymous
      February 12, 2007 at 8:50 am

      I am scheduled for infusion on Valentine’s day of all days. This will be considered the first of my unknown number of monthly “boosters”.

      My question is, my symptoms seem to have improved and I dont know if I should go. I’d hate to take from someone that needs it more and sure hate to think of the bill to come from it.
      I havent been to the nuero since the end of Dec and due to go the 22nd of this month.
      For the first time in a while, I am wiggling my toes. I’m still tired, but how would I know if that’s not just from being a mom ?

      what to do ???????

      as always, thanks for your replys.

      Stacey

    • Bill
      February 12, 2007 at 10:15 am

      Stacey,

      The goal for most of us on IVIG or Plasma exchange is to find a cycle of treatment that keeps us on the level. For example: I was doing IVIG every 4 weeks. Then I started getting weak in the 4th week. So, we tried a cycle of every 3 weeks and this kept me from getting weak. I am now on exchange (due to reaction) and we follow the same pattern. We experimented with the number of exchanges and the time between and finally found that 5 exchanges in each 4 week period keeps me basically symptom free.

      I don’t know if this is the answer you are looking for but I do hope it helps. Don’t let your Dr. or yourself get you into a “yoyo” cycle.

    • Anonymous
      February 12, 2007 at 1:46 pm

      thanks, Bill.

      It’s not my dr. It’s me. I’m having a real hard time accepting that this isnt going to get better .

      Maybe someday, I’ll accept it.

      I’m curious to know how many others denied it. And how long does it take to accept it. My symptoms didnt progress like so many others, it’s been more than a year and I am thankful. It just makes me wonder. It makes it more difficult to accept the reality.
      And then when you get the bill from the hospital that does the infusion, it’s enough to run even faster. Well, if I could run…I wouldnt run far.

      peace to all.

    • Bill
      February 12, 2007 at 2:57 pm

      Stacey,

      It took about a year from first “real” signs of CIDP to treatment for me. Down hill all the way. I never thought about “accepting” or not. I just thought treatment would make me “ok”. It did. Fatigue always there but I was again able to hike and climb and run. Lucky me. I still respond well to treatment. But, if I don’t get treatment I am quickly unable to walk, etc. I guess I sort of take a “Polyanna” view that it surely could be a lot worse. I can think of a lot of things out there worse than CIDP. I don’t mean to say CIDP isn’t bad for it is. But I would rather have CIDP than lung cancer, heart disease, Lou Gehirg’s disease. Of course, I would prefer not to have CIDP or anything else. But, I am where I am and that is where I am and feeling sorry for myself just doesn’t get it done. HOWEVER, who knows, you and I might some day get better! It might go away! Mean while, we do the best we can.
      When you reach the end of your rope, tie a knot and hang on.

    • Anonymous
      February 13, 2007 at 8:56 pm

      I’ve got a great big knot in my rope !

    • Anonymous
      February 14, 2007 at 7:18 am

      Stacey,

      I am the master of denial! I went about 1/2 year every two weeks with IVIG. I finally got to every three weeks. This past spring, my symptoms quit going down towards the end of the 3rd week, so I asked the doctor to go to every 4 weeks. I was certain I was a miracle and my CIDP was going away! WRONG!! I went downhill FAST! That’s when I went to a specialist who got me on CellCept.

      So, today on Valentine’s Day, I will receive the sweet healing candy of IVIG!! This is my first time I get IVIG on the 4th week. But I noticed about 3 days ago my numbness was spreading again. So, I did make it through 3 weeks without increase in more symptoms- just not totally 4 weeks.

      Have I accepted I have CIDP forever? Most of me has!! That’s the realistic part of me, but I still have my optimistic side. :rolleyes:

      My advice?? Tell the optimistic side of you to be quiet for a while and get the IVIG. Swing on that rope and take a nap!

      Best of luck!!
      Dennis

    • Anonymous
      February 14, 2007 at 8:17 am

      With so many people getting regular regimens of Ivig…every three weeks, once per month, or whatever the case is…could it be that those who wait too long and the symptoms worsen or reappear, that our bodies get used to the IVig ?

      I am going today also, on Valentine’s Day. I still dont want to but will with hopes this will make me even better.

      as far as the nap…it’s an expensive one !

      good luck !

    • Anonymous
      February 14, 2007 at 10:39 am

      I have treatments every eight weeks and count myself very blessed indead. I stopped the treatments last year, I thought I was in remission. As soon as the steroids wore off the symtoms were back. My doctor is now going to contact my insurance company about CellCept to alleviate the vast number of side effects. Do insurance companies fight on this?:confused:

    • Anonymous
      February 14, 2007 at 6:37 pm

      Stacey,

      I can’t think of any positive that can come from not getting your IVIG treatments. As you go along maybe the frequency or amount will be adjusted down. You don’t want to risk permanent damage which will affect you forever.
      As for the cost, are you insured? If your not, the reason I ask is that there are many programs available for assistance and for those who qualify, free IVIG. I was not covered by insurance when my CIDP hit so I had to do alot of research in a hurry, just let me know if I can help.

      I think it is great that your thinking of others since IVIG supply is low, but in case you didn’t know CIDP patients are considered considered a priority. Take care.

      Jerimy

    • Anonymous
      February 14, 2007 at 8:44 pm

      Jerimy,
      I do have insurance. I pay the first 1300.00 and the rest is covered. It doesnt sound like much when you compare it to the bill I received for five days of Ivig. 5 days was 52 thousand dollars. Todays treatment was just one. I am guessing the bill will be about 10 thousand. My cap is 2 million lifetime. Unless my insurance changes, I’ll reach it.
      I dont mean to complain b/c I know there are many without insurance and struggle with the costs. It’s just extra money I dont really have and getting ticked every time I have to find a way to pay it.

      I did the IVig today…five long hours, slept two of them… and tonite and very worn down. Very. My legs feel like they are 300 lbs a piece and I am having random zaps that i have never had before. I compare them to the zaps we get during an EMG. And real bad aches in my legs and ankles. The zaps are also in the legs and ankles.
      My mom said maybe the nerves are waking up. Is there such a thing ????

      As with every treatment, I am not so well at night but always better in the morning. I hope this continues. I dont want lasting zaps.
      Or aches.

      thanks for your help. I’m so glad I found this site.

      time to rest.