IVIg Isn’t Working for Me

Hello Rod,
I was always told by my neurologist, as well as reading it when I research CIDP, that the second purpose of treatments like IVIG is to “CONTROL” the progression of CIDP. I was on IVIG from 1999 to 2003 and I rarely felt improvements or felt like “wow, this is working”. For reasons unknow to me, he wanted me to stay on IVIG’s. I have been in a remission for seven years now, no sign at all of relapses.

I have had 8 separate treatments of IVIG since Feb. 1, 2008. The first 2 times I went thru 5 straight days (.4 gm/kg) and recovered tremendously.

The next 2 sessions we went with 3 days (same dosage) and I hardly noticed any improvement (4 weeks apart). That is when we added steroids to the mix. Then another 3 day dosage, which again did virtually nothing.

A Neuro-Muscular specialist saw me and we changed back to the 5 day sessions. The last 3 have been 5 days and I have been doing quite well, even stretching out the time between sessions to 4-6 weeks. I am not sure if the 5 day sessions alone are helping or the combination with the steriods, but I sure did not benefit from 3 days at .4 gm/kg.

Hi Rod,
Do you know the mathematical conversion of 1200mg to grams? (math is not my forte) In any event, on one hand the doc is doing the right thing saying no steroids due to diabetes, on the other hand, waiting till you relapse is risky, especially if you let it go too long. You mentioned you do not see added improvements, but do you see regression. If not, we do know that the ivig holds you stable. PP is the next protocol, maybe right after the pp you could follow it up with ivig, this would give you the cleanest slate so to speak, regarding antibody removal from pp and ivig having less to tackle on the autoantibody front and more efforts concentrating on the inflamation part. Just a thought??? Good luck.
Dawn Kevies mom

Hi Rod! So sorry to hear this and hope that they can find something that will help you get well soon! Good luck! Very frustrating dealing with. Sending you Cyber Hugs
Linda H

Hi, Rod.

Although IVIg, steroids and PE are the first-line treatments for CIDP, there are others. IVIg stopped working for me a couple of years ago, and oral steroids only make me sick (I managed to lose weight taking them because of the nausea — the weight loss was the only benefit I had). Now I’m on high dose IV steroids along with azathioprine — an organ transplant anti-rejection drug. The steroids give very short-lived improvement; azathioprine takes time to work, so we won’t know if it’s helping for another couple of months.

There are also drugs like methotrexate (used for rheumatoid arthritis), rituximab, etc., which help some people for whom the normal treatments are ineffective.

In other words, don’t give up hope! You may feel like a guinea pig, but experimentation generally finds something that will help.

Best wishes in the battle,

Deb
London

Hi Rod,
Is there any way the doc would consider kicking the amount up? Currently Kevie gets 1.4 grams, he did get 2g for 8 months straight before we started tapering down. For the most part, with the exception of the last two months (because of cold season I presume) he has been tired, but stregnth is intact. KEvin still does have 100% stregnth. Or, is there a possibility to increase the frequency?
About PE, I have no experience, but at the symposium, one of the docs did mention if possible try to get venous access as opposed to a pic line type of apparatus. (have no idea what it is called, no experience, but I do remember the doc saying venous access is preferable), A member named Markens gets PE regularly I bet he would take some questions and shed some light for you, as well he would know if venous access if realistic or not. Good luck with your treatment plan, prayers sent your way.
Dawn Kevies mom

Hello Rod,

Dawn is correct; I do plasma exchange on a regular schedule and am quite happy with the results. I wrote a long post to Linda Cala about my experience with plasma exchange. Rather than rewrite it, here is the link: [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL]. I have adjusted the schedule now to 3 times in one week, every 6 weeks. In order to do so, I take both prednisone and azathioprine. I am slowly tapering the prednisone, in order to figure out just what I need in immunosuppressants.

If you go the plasma exchange route, you will have to find how often you need treatments and then decide if you need something else to make your life manageable. At one point, I needed four treatments every 2.5 weeks. That schedule was not working for me; hence the other drugs. For you, it might be acceptable. It all depends on what you need in your life.

Speaking of steroids, Dr. Lewis suggested in his talk at the recent Symposium that it can be acceptable to use steroids with somebody susceptible to diabetes. Yes, the person might become diabetic. Diabetes is manageable, though, and if having it means being able to work (or walk), perhaps it is worth it. Perhaps not, though; it is a very personal decision. My point here is that your neurologist should not categorically rule out steroids, especially if nothing else works.

By all means, though, try plasma exchange. I am really glad I did.

Godspeed in this.
MarkEns

Plasmapheresis is another treatment option. They say it works on about the same percentage as IVIG. By the way, IVIG didn’t help me too much either.

Fortunately there are options Good luck

Dick S

Hi Rod,
Is the 68K the amount billed or payed? The home health agency we use bills 18K but gets 7300K. Can you do home health, it might be cheaper or not, not sure. Would you consider pp followed by ivig? Maybe you could get better results if the ivig has less work to do with the pp cleansing the autoantibodies out first? Good luck to you.
Dawn Kevies mom

Hello Rod,

Happy to help out with some encouragement.

On the scheduling of PE: when I first started, we did five treatments, on W, F, M, W, F. I think doing PE two days in a row, as your first schedule does, is something to avoid. I try to have a day in between treatments. If I have to schedule treatments for two days in a row, I try to have the as early as possible on the first day and as late as possible on the second day.

I agree that diabetes is something to be vigorously avoided. I would not say having diabetes is a small price to pay for a significant improvement: having it will shorten one’s life and substantially complicate what life remains. CIDP unfortunately often extracts a very large price.

As Dr. Lewis pointed out, it depends on what you really need to do in your life. If you need to run marathons, then the strength improvements that might come from steroids could be worth the cost. If you need only to do light chores and to read books, perhaps the improvements are not worth the cost. This is a decision to discuss with your doctors (all of them), your family, a counselor or pastor perhaps, and your financial advisor.

Godspeed in your treatment choices.
MarkEns

I knew you would help Mark!!
Dawn

i thought you might be interested in seeing plasmapheresis done… some months back, i considered it and looked at videos of it being done online. i’m the type that likes as few surprises as possible. i have copied and pasted one link that shoes the procedure fairly well– but you can probably find others too. here is one that is pretty clear: [url]http://www.youtube.com/watch?v=ARi-61nIcjQ[/url]

it actually made me feel more at ease when i saw it being done– the patient looks very peaceful, etc.

let me know what you think–
alice

p.s. let’s chat sometime 🙂

rod, for the record, ivig didn’t work for me either. according to my neuro, who like yours, is a well respected neuromuscular specialist, ivig only works in this condition in about 40% of the people.

as we have all gathered, we are all so different– ivig is the big pharmacy money maker right now. so i posit the notion that it is over-rated. having said that, i know it works wonders for some.

that’s my 2 cents 🙂

alice

I guess I’m one of the lucky ones. I had my first 5 day treatment in August, and after the second dose, could walk again, and got better after each day. But I didn’t rest, went back to work full time, and by Oct 3, was rushed to the ER for my second 5 day treatment, and the addition to 60 mg of Prednisone. Again, on the second day, I was up and walking. I did have another 5 day, since I started with some numbness in my hands, and feet, and now I am what I consider 95% back to normal. Except for the fatigue. I weaned myself down slowly to 40 mg of Prednisone, and plan on doing that every couple of weeks (by 5mg), until I reach 10mg, then consider the alternatives. As a precaution, I am scheduled for two 1 day treatments a month apart. And today I learned I have subcapsular cataracts from the Prednisone, hence my decision to get off it. I don’t take any pharmaceuticals of then that, but do lots of supplements and herbs, and anti-imflammatory foods. Just thought I’d give IVIG credit, but I HATE the pred!!!

Dawn
PS. I will only take Gammaguard Liquid. Gammunex and Gammaguard S/D 5%, gave me acid problems, and burning stomach, and headache. I don’t have to premedicate with Gammaguard Liquid. And Benadryl is not good for people with cataracts, so I won’t be taking that.