What Next?

    • Anonymous
      January 5, 2012 at 9:25 am

      I was diagnosed about a year ago and had my first IVIG in March. No other meds at this point and the IVIG really helped, to the point that I was not on here much and mostly forgot I had this dreaded disease that is until my DR tried six weeks instead of four between IVIG. Right after four week, my symptoms returned with a vengence. In the matter of two weeks, I almost felt as week as I did prior to treatment. It all came rushing back in such a short time. DR was dissappointed in regards to how quickly I regressed and now we are going to try five weeks. This really made me realize how dependant I am on this treatment. I’m scared. 37 years old, will I need this forever. What else can I do? Is there any hope of this just going away. I am on no other meds, and trying to keep it that way but hard to sleep at night as my whole body falls asleep with tingling and numbness. Any advice? Hoping 2012 is a better year but not so far:( I know I shouldn’t complain as IVIG does help me but for how long will it. Just scared of what the future holds.

    • January 5, 2012 at 7:32 pm

      We all react differently to treatment so my experience may be different.

      I started IVIG 1994. 5 day load. Then 1 every 8 weeks, lowered to 6 weeks and then to 3 weeks. If I went too long I regressed rapidly. 3-4 days from first symptoms to barely being able to walk. I did every 3 weeks for several years. I am now doing IVIG at 6 week intervals and am symptom free. For me 1 day every 6 weeks beats the $%#@ out of being unable to walk. I suppose I will be on it for the rest of my life. For me, I see this as a great bit of good luck and am “glad” to do the IVIG as the alternatives are really bad. I hope you get your IVIG going right so you are symptom free and can feel like that with the aid of IVIG you will live a long and pleasant life.

      Good health to you.

    • January 5, 2012 at 10:39 pm

      jgl – sorry to hear you are going through this, none of it is fun!! My dr said they can add cellcept or steroids if need be, but those can have more side effects than the IVIG.. so we are planning IVIG every 3 weeks, inconvient yes, but if it works i’m ALL for it!!!
      as far as the sleep at night goes – i have the same problem, i went months and months not sleeping. I would go to sleep instantly, but wake up constantly with the limbs asleep sensation ALL NIGHT – i never slept! I am now taking lyrica, and must say it has saved some of my sanity! No sleep, plus a crazy illness can lead to one big mess 🙂 I feel it immediately when the lyrica wears off. I dont’ take any during the day/morning and only 100mg a night (which is apparently a very small dose), but it does the trick!
      Good luck with this all!!!!

    • January 6, 2012 at 7:51 am

      I am sorry to hear of your troubles! I had been on once weekly ivig for abut one year, and due to continued relapses started Imuran daily – I have been able to go to every 10 day IVIG but not past that. I share your feelings about being so dependent but the flip side is that it is helping to control my symptoms and I am grateful for that. I tried cellcept , but was unable to tolerate due to side effects. Hope you feel better soon.

    • Anonymous
      January 9, 2012 at 2:51 pm

      Thank you all! I guess I was just fooling myself that this would all just go away and now I have to accept that I might have to try something different in addition to the ivig. Appreciate everyones support.