long-term IVIg maintanence

    • Anonymous
      September 26, 2007 at 10:12 pm

      Hi, everyone – I would like to ask members who have been receiving long-term IVIg treatment – say, over 2 years – to comment on their situations, doctor’s treatment plans, frequency of infusions, ability to hold up despite any complications of long-term IVIg treatment — I’m trying to get a handle on what the limits are – or if there are any. Thanks very much, Bonney

    • Anonymous
      September 27, 2007 at 1:37 am

      Are you asking how much IVIG is too much? If so, the answer is nobody knows. I did extensive research on that question last year & no one could tell me exactly what the limitations are. I did learn that the MOST a person should receive in one infusion is 2kg per gram (I think that was the math). Some people have received that dose for 10 consecutive days with no complications. There are no guidelines on frequency of infusions or long term use of IVIG.

      Emily (now 6) has been receiving IVIG since she was 4. She’s received probably around 100 infusions by now – I’ve lost track. When her disease was at it’s worse she was getting about 9 infusions a month (2 for 4 weeks then 3 for 2 weeks over 4 months). She is now getting IVIG once every 14 days. Her dosing schedule was quite different than other CIDP’ers & most dr’s would not have agreed to it.

      Our treatment plan is to continue with IVIG infusions every 14 days for at least the next 2 months. Then we’ll probably try to go every 17 days for a few months then every 21 days and so on. The goal should always be to off of it entirely at some point in time. You can’t lose hope that it will happen.

      As a precaution we monitor Emily’s blood work every 4 weeks and we will continue to do so for as long as she is on IVIG.

      Children tend to hold up better against the disease & the treatments than adults do. I guess that’s the plus side of having a “sick kid”. So my answer probably won’t be of much help to your specific situation.


    • Anonymous
      September 27, 2007 at 9:02 am

      Hi, Kelly, and thanks! Your information does help; it lets me see someone else who has been maintained over a period of time.

      I have been getting IVIg since August 2004 and my neuro has tried to wean me several times. I can maintain stength (his highest concern) on lower amounts, but all other original symptoms return in spades!

      His concern is that every time I get IVIg, it is an opportunity for infection, he also mentions chance of AM and blood clots.

      My problem is quality of life – return of pain, deterioration of gait, balance, stability, return of foot-drop, level of activity in day-to-day life is lessened. And, because my life is so affected by what I consider deterioration of ability, I am discouraged for the first time in a while.

      Neuro suggests uping Lyrica and adding Ultram(?). Adding antidepressant, and adding stimulant to deal with symptoms. He is also having me weaned from CellCept.

      I am hoping that others who have been maintained on IVIg will share their experience -and anyone that thought they couldn’t get along w/out it, but found they could substitute other ways to get along will share too.

      Thanks for answering – Bonney

    • Anonymous
      September 27, 2007 at 4:35 pm

      I have been on .500mg per kg of body weight for more than 4 years. i get this amount every three weeks. I am weighed before each infusion and the amount I receive is calculated based on this weight. Three weeks ago I weighed 173lbs and I received 40gr of Carrimune. In early May when I weighed 207 lbs I receiveds 48gr. I also take 25mg Benydryl and 2 500mg Tylenol about 1 hr before I start the infusion. Infusion rate is also based on weight, with a heavier person getting the infusion a a fas ter rate than someone who is lighter. Also different brands of IVIG can be infused at different rates. An example is Gamunex, which has a 10% concentration may be infused at almost double that of Carrimune, which is a 5% concentration. I find I begin to fatigue a few days before I am due to be infused. I still am on Prednisone, now down to 10mg. Seems like I start to have problems if I go lower than this. I also take Imuran which I use primarily for Chronh’s disease, although this is supposed to help lessen the need for prednisone.


    • Anonymous
      September 27, 2007 at 4:55 pm


      I have had infusions for 11 years. I first started out once every 6 months. It
      then became once every two weeks. I have a chest port which helps alot.
      Then, I went to once a month at 100 grams over a 24 hour time period. IVIG
      is an immodulator, which means it balances out the immune system from the
      I don’t do infusions over several days, I get it all in one day at home. I see
      results usually within hours of the infusion. One dtr. told me long ago, he
      would never do it because of possible contaimination. Well, I have never had
      a problem with it at all. I tried to get off of it by taking prednisone and
      cellcept – but that put me in the ER three times. So now, I take the IVIG
      only and am fine. I have a script for every two weeks, but can put it off for
      once a month. I don’t do any blood tests, nothing. I have no side effects
      from taking it.
      If you worry about clots, you can take aspirin for children to keep your
      blood thin.
      Now, I take 50 grams in one day every four weeks, if I feel that I can go
      longer, I push off the infusion another week. I have never needed to go to
      the hospital until I was issued the prednisone and the cellcept…never again.

      Good Luck

      Miami Girl…I weigh 125 lbs. and am infused at 166 ml. per hour.

    • Anonymous
      September 27, 2007 at 10:52 pm

      each month…at a dose that is hier than many here…I’ve not had much by way of explanation by my doctors, but I do know I’ve more than one raging set of immune going on, and so does he. I am grateful for what I receive and it keeps me from the wheelchair and able to move about some.

      When I was first offered the IVIG option [steriods were out due to other issues {WHEW?}] and it was the IG or plasmapheresis..I read and read and read just about everything available for ‘free’ on the ‘net’ and realized that these options would probably be or require a commitment for life. I was soo miserable that I chose the lesser [and was able to choose?] of the ‘invasive’ procedures -being IVIG. As Long and you know of and learn HOW it should be done/administered to you properly and the why’s behind it all, you should be OK, Getting that information is harder. When I had infusions in a top-rated hospital, I quickly realized that not one patient was being informed about anything, regardless of whatever infusions they were receiving. When I had one, just one…severe reaction…well, let’s just say that my docs knew, my state medical board knew, the IG manufacturer knew as did the FDA…I wasn’t at fault..I showed up for what had been a safe procedure? and within an hour got what was probably the a-meningitis thing…NOT ONE on staff knew what to do other than ‘discontinue’ infusing and ‘let me drive home’…
      [B]Knowing about safety[B][/B][/B] and how infusions should go, and when something goes maybe off? to SPEAK UP CLEARLY [not that you really can?] not only saves your life, but others.
      It is a commitment, but the thing is, IF you can get it, and insurance helps [folks on Medicare are going thru lots of awful problems as CIDP is considered OFF label for an ACQUIRED disease rather than hereditary] Just know that what you get is very precious and that with this good stuff, you can have a life. I hope this all helps…

    • Anonymous
      September 28, 2007 at 2:08 am

      I’ve had 3 days bi-weekly of IVIG since May 2005-kept a journal of each one with ID number from drip baggy.This summer I tried to go to 3 weeks and quickly had trouble breathing and too tired to take care of myself. I don’t know what the future holds for me but IVIG got me walking again and the pain is now tolerable.
      I take Methotraxate pills and major pain meds-said no to stimulants and Lyrica type drugs didn’t work for me unfortunately.Predisone made me wired, sick and I had nightmares.
      I got my chest port after all my veins went-it scared me to think of having that metal thing in me.
      I now have IVIG at home after passing out at the wheel coming from clinic in April.Infusions go much faster and no driving-like it lots better.
      As “BONNIE” had posted-the swift loss of ability between infusions is what gets me.I have maybe 4 hours of energy on a good day. Some gardening, a trip to the library, knitting and lunch with friends. More than before.
      No one can possibly understand CIDP/IVIG and how our lifes are forever intertwined with all of this.It’s okay to feel down about it-we’re human.
      I sent you a private message too.

    • Anonymous
      September 28, 2007 at 11:03 am

      Hello Bonney,
      I have been stable, no return of progression or signs of a relapse, for almost four years now. I no longer need treatments, other then physical therapy and diligent exercising. IVIG’s were my treatment and I received them for about four years. I no longer remember the amount of IVIG’s I received, but I do remember that during the first year and a half to two years, I’d pack a breakfast and a lunch to take with me. I’d go for the infusion in the morning and it would be dark when I went home. Through trial and error, my doctor and I found out that I did well with a maintenance of every two weeks and again through trial and error it was found that I did well with just three bottles, which I think I’m remembering, dripped for an hour each. So, so from being an all day happening, I was at the hospital three hours.

      If you’ve tried to be weaned off the IVIG’s and you start feeling worse, my opinion is that you need to stay on them because that is what’s keeping the progression CONTROLLED. I was able to end the IVIG’s because my progression stopped.

    • Anonymous
      September 29, 2007 at 8:10 am

      Dear Ron, Liz, Miami Girl, Limekat, and Homeagain – Thank you each for your posts, they are so helpful! I continue to be surprised by how “right-on-the-money” this forum’s participants are – and you would think that after four years I would know that!!
      LimeKat and Homeagain, thank you for PMs – I have answered each one, hope you got them.
      Miami Girl, your specific info is so helpful because there are so many matching stats from meds to weight.
      Ron, I hadn’t heard about a regimen like yours and will talk to the dr. who oversees my infusions.
      Are you all saying that my neuro’s evaluation of strength – his only criterion for receiving IVIg – is not necessarily the only one by which you all are evaluated?
      For the first time since being treated by this dr. – three years – I felt last week that he wasn’t hearing me. Not that he wasn’t listening, but that he wasn’t hearing me. I think I’m pretty plain spoken, and my sister was with me, but he didn’t want to hear about anything but strength. Have your docs emphasized strength in your evaluations?
      Again, you all have my gratitude – Bonney

    • Anonymous
      September 29, 2007 at 2:42 pm


      I started IVIG 8/2005. I would receive 4 days in a row of IVIG I do not rememeber the dose. At that time they thought I had GBS. By about mid Sept. 2005 my sypmtoms returned so I received another 4 days. At that time my neurologist thought I may have CIDP but thought he would wait and see how I did after the 2nd treatment. About the 3rd week of Nov. 2005 my symptoms returned, I was dx with CIDP started on CellCept 1000mg 2 times a day and continued on IVIG therapy 60GM once an month until spring of 2007. At that time the length between IVIG infusions changed. I received 60 Gms IVIG every 5 weeks twice then every 6 week 60 GMs twice. I have been on the CellCept since Nov. of 2005. The first week in July was my last dose of IVIG. I am still taking the CellCept and I also take Lyrica 150mg 3 times a day.

      I feel great, today I did an hour weight work out with a trainer and then did an hour of aerobic execise with weights. I still have the burning and numbness of my extemities and it gets worse when I over do it especialy if I am on my feet over 1/2hour, standing in one place. So I try to sit whenever I can.

      I feel so forunate that this therapy is working for me so far. I feel my myelin has had time to regenerate with the 2 years of IVIG and the immunosuppression.

      I hope this is helpful.

      Pam K.

    • Anonymous
      September 30, 2007 at 1:21 am


      In answer to your question about strength…my first neuro, who was the one
      that determined the CIDP, the one I’m going back to in November, always
      checked my strength with squeezing his fingers, pushing back against uplifted
      arms, hands, legs..pushing down against his hands, turning my feet inward or
      outward, raising my wrists up, or trying to pull my foot up voluntarily at the
      ankle. He does this every time and records the distal information.

      However, he does ask about the IVIG infusions, whether or not I still feel that
      they are helping me, etc. He is not keen on steroids at all…he does not put
      a patient on them longer than 3 months. His thoughts are, if the IVIG is doing
      the job, then I should stay with it. He writes a script for 6 months worth,
      then I see him again. If I have anything that I question, I email him, or call
      him….he is the assistant professor of neurology at Jackson Memorial hospital
      here in Miami…he sees patients only on thursday…the rest of the time, he
      teaches neurology or does research. The professor of the neurology dept. is
      the only one in the state of florida that has credentials, published abstracts
      in CIDP, his staff does the same.

      You should be able to talk to your doctor about anything. Heck, I bring my
      doctor birthday presents, if I see him in december, around his birthday. He
      was the one that guided me towards an immunosuppressant neurologist. It
      was my decision to see if the drugs would benefit me – they made it worse.
      My original doctor, at Jackson, was the one that said a sural biopsy is not
      necessary…we know you have CIDP. They do it now on the skin, instead of
      invasive surgery. So, I’m happy to go back to him…there isn’t a cure for this
      but, everyone has some form of meds that work for them. I wish you the

      Miami Girl 😀

    • Anonymous
      October 1, 2007 at 9:19 pm

      are and always should be those basic ‘strength, reflex and prioperceptive’ tests. I was holding my own at first for the first year or two [even with PT] but after that [even on IVIG] it kind of ‘stabilized to am [I]almost reflex[I][/I][/I]
      There is hope? My last neuro visit, my reflexes actually tried to reflex? It was as startling to me as my doc? I try to do all but the finger touch his hand then nose stuff with my eyes closed, so I don’t/can’t cheat…also I find I am more relaxed doing it..no anticipations.
      As for biopsies, web up ‘CIDP+Sural biopsy+ Policies’ or ‘CIDP+IVIG+ Policies” and from there after reading several major plans policies’ on CIDP diagnosis…you will find that most plans don’t cover it! They usually indicate about 10-20 diagnostic criteria and tests regarding diagnosis. Those other tests should be your ‘road map’ for testing etc. Skin biopsies are for some ins. plans accepted [many still feel they’re experimental tho]. But biopsies for nerves are only a confirmation that yep, nerves are dead. You meet the essential 9 of 10 criteria, you are in! Or 15 of 20, whatever. Good luck!

    • Anonymous
      October 2, 2007 at 9:36 pm

      Just read this thread with curiosity.

      Honestly, I can’t remember how much IVIG I get every treatment. When I was first diagnosed, I received 5 bags 5 days straight twice in about a 3 month period.

      This did not work. So they decided to give me 2 bags for 2 days every other week. This was the fall of 2005. We stretched out the 2 weeks to 3, then 4 within the next 1/2 year or so.

      I am now to every 6 weeks. I am also taking CellCept.

      Now, where I am confused is when I am feeling badly. For a couple weeks after my infusions, my BP spikes, even though I take Benedryl. Numbness is sporatic in increasing/then decreasing a bit. I’m not sure when I have symptoms if I am getting enough IVIG or too much. And of course, no doctor knows. Is my BP related to the CIDP or my family genetices or the amount of IVIG I am or am not getting. Then, my eyes are getting a little bad, which is a symptom of CIDP- or is it that I am in my 40’s?

      I know this is rambling, but it is quite frustrating trying to fight an “invisible” enemy!


    • Anonymous
      October 5, 2007 at 6:47 pm


      I have been seeing my Neurologist at Ohio State since Feb of 1995, and on numerous occasions he has often said to me that each CIDP patient he takes care of needs a different treatment plan as what works for one person might not work for another. He is however, able to gain experience as to how we might react to a particular treatment method. He has always let me be part of the decision making for my treatment. I just saw him on Wednesday, and we discussed the possibilityof decreasing my prednisone from 10mg daily to a lesser amount. I told him that although I have had no problems in the past six weeks since we reduced amount taken by 5mg, I did not feel comfortable with any further reduction until after I have the partial hip replacement surgery, which has not as yet been scheduled. I do have a scheduled appointment with the surgeon on 10/31/07. He agreed with my reasoning, and any further decrease will be after the surgery.