Question for Dawn: re weaning down on IVIG

    • Anonymous
      April 28, 2010 at 11:36 am

      Hi Dawn,
      Would you please tell me the weaning schedule that Kevie was on when he had his IVIG decreased. Hubby finally has things coordinated to start decreasing his IVIG. Currently he is on 120 G every three weeks. He got the order to decrease it to 100 Grams every three weeks. I’m wondering how many cycles of 100 G. he should have before he gets it knocked down to 80 Grams if he maintains well at 100 G? I know from Kevie’s experience that perhaps going down to 60 G. may be the holding dose. Thanks for any advice Dawn as it seems that we get little advice from doctors.

    • April 28, 2010 at 9:22 pm

      I will answer later, have to make dinner, Kevie sick from loads.

    • Anonymous
      April 28, 2010 at 9:43 pm

      Whenever you have time Dawn–no hurry at all. I’m sorry that Kevie is sick. Take care sweetie.

    • April 28, 2010 at 11:27 pm

      Hi Laurel,
      First of all, regarding YOUR MS, there are more and more people taking the worms and going into remission. Univ of Wisc. is looking for people to enter a trial, they had success with one group and are seeking another. I think cidp would benefit too!

      Answer to ivig question. 120g seems like it is a maint? For instance Kev is 5’6 and 153lbs, his load is 144, we are doing 140 now, starting from scratch.

      The old wean schedule was 10 grams less every month. May was going to be totally off. The ncv/emg was not that bad, slightly slower velocities from the previous normal one a difference of 2-4 milli seconds. No blocks. We were weaning to see if he could be off all together, obviously not.

      I have this one abstract that shows the time it took for people to get off of ivig. Some were on it a year, most that went into remission were on ivig 3-15 yrs before they went totally off w/no relapsefor a year. No info was given after the year.

      Anyway, if the doc wants to try, It is no big deal, if you watch closely, which you do, you can catch it quickly and get a load and get back to you optimum. Ours seems to be 70g a month for full function. I would recommend a ncv/emg to compare to shouild there be worsening and an issue w/the insurqnce company should he need to go back on. As they say the proof is in the pudding, the ncv can’t lie.

      Good luck in the weaning, praying that your hubby is home free!!

      I am really tired, everything is all over the place, so if you are confused, write back and I will check tomorrow. Teacher appreciation week is next weeek so I am really busy doing stuff, plus Kevies treatments, cut grass, planted bulbs etc. dog got a bath, dinner, laundry ironing, vaccumed. Wow! I feel better now about bragging how much I did today!! I just wish I could loose weight with all the stuff I do!!What I lack in weight control, I have in weed control!

    • Anonymous
      April 29, 2010 at 6:20 pm

      Thanks so much Dawn. Everything was clear except for your worms comment in the first paragraph.

    • April 30, 2010 at 1:34 am

      Look up helminth therapy under a Dr. Weinstock (gastro) and Dr. Fleming (neuro running the trial at Univ of Wisc) They are using worm therapy to put into remission MANT autoimmune diseases such as MS,crohns, ibd, ulcerative colitis, allergies, asthma. You can join the trial in Univ. of Wisc. for free. They are readily available in Canada through other avenues. There is also a guy named Cal, he is on the helminth therapy forum he has srojens AND CIDP. His sjrogens seems to be in remission, he was going to think about starting to wean off of ivig for his cidp. If it works for ms and so many other autoimmunes that have no connection to each other it has to be considered for cidp. They work as a modulator like ivig. The protein they create increases t-cell regulator production, enabling the body to do it’s job properly and throw out auto antibodies. It is much more complex than that, this is just a snip it of the process. It seems to be a six month course and then people see the results. There are 2 types of worms they use, tso therapy which is eggs of the pig whip worm and a type of hool worm. This is real Laurel and the docs working on it with big pharma ARE approved by FDA to dispense them. They are closer each day to bringing it to us. Currently, those who do not go through the 3 docs go to Canada and some to Mexico and get it through other companies. i personally would only consider the three docs approved. The third is a gastro in Illinois, some 20 minutes from us. I am going to see how things go. It is a possibility still under my radar.

    • Anonymous
      April 30, 2010 at 11:18 pm

      Dawn. very interested in this worm therapy you mentioned. I have looked it up and it sounds interesting. You also mentioned that it was available in canada but can not seem to find anything about that. Do you have any info in regards to that?? I am no longer able to tolerate ivig. I am going down hill fast. i have an apt. with specialist may12th in Vancouver. i want to ask him about sub Q ig and other options so any info would be great so I can take it with me.


    • May 1, 2010 at 9:42 pm

      Google helminth therapy forum and it is a site like this, well, kind of, this one is MUCH better. The name of the company in Canada is AIT. I am pretty sure of that. I am too tired to look at the map, but isn’t Vancover on the CA side of the US map? If so, it might be cheaper to go to Mexico for you. I am pretty sure the Canada facility is right above Michigan. The name stands for Auto Imune Therapies. AIT It is a bit complicated, you have to have a doc here that is on board and agrees to oversee your care in the event you do need to be dewormed. (that is no big deal, kids get ringworm from school and daycares all the time) Check out the other forum, pm me if you have any questions.

    • Anonymous
      May 3, 2010 at 5:08 pm

      Hello Dawn,
      You mentioned upstream in this thread that you have an abstract about how people have been weaned off IVIG. Could you please let me know where I could find it? That is something I have been talking to my neurologist about lately.
      Thank you,