Lots of IVIG
 

I saw my Dr. today and he scheduled me for three IVIG treatments a week for eight weeks. He did this because of my weaken state. I just finished eight treatments about two weeks ago which did nothing for my condition. He also referred me back to my old Dr. at the ALS center for a second opinion on my treatments.

Anyway my question is has anyone had this type of IVIG treatment? :eek:
Mike

Sorry, Mike, I haven't had IVIG. Can't.

I hope you'll explore the possibility of something else exacerbating your MG. You know how common thyroid disorders are. ;) Are you out in the cold weather a lot? Have you been sick lately?

Just trying to help. I hate when MGers aren't doing well. It affects all aspects of life.

:hug:
Annie

I went downhill when I went off Imuran. The Imuran was working but the side effects were so bad we did not realize it. So I was only on Mestinon for about six weeks then I got a small infection and went downhill from there. We started me on CellCept and prednisone but none of it has taken effect. He is hoping that the IVIG will get me back on track. When all of these treatments are done my arms are going to look horrible. I believe it's the prednisone it is causing me to bruise so bad. My Dr. keeps excellent track of my blood work I have a standing order for once a month and he reviews it very carefully.
Thank you
Mike

I'm really sorry to hear you're so weak. That sounds like an awful lot of IVIg... I'm disappointed that the CellCept/Prednisone combo isn't helping. I wonder if your doctor would consider plasmapheresis.

I have been thinking of what you say about Imuran, how you didn't realize it was helping until you went off it. I was thinking that my Imuran hasn't done anything, but it finally occurred to me that it's possible it's keeping me from getting worse. I'm just grateful that it doesn't make me sick like it did you.

Thanks for the update. Please let us know how you're doing. I'm thinking of you.

Abby

I have been Cellcept about 6 weeks. We did discuss plasmapheresis but he felt like it was very similar to IVIG so he chose the IVIG.
Mike

Hi Mike - I do IVIG every 2 weeks, but part of the issue with IVIG is the dosage. The normal dose of .4 grams/kilogram of your weight. I used to get it monthly for 5 days. I now get 1 gm/kg and do it bi-weekly. This give me a larger dose all at once without increasing the overall IVIG. It seems to work better for me. I've been doing this for about 6 months.

Good luck in finding what works the best for you.

Juanita

That's a huge dose of IVIG, unless you are doing tiny doses each week. Do you know how many grams per treatment you are getting? Please be sure you have weekly kidney function tests. I know someone who ran into trouble using a protocol of high dosage IVIG.

As for it not really working....well, that happens. Sometimes the MG is just bigger than the available treatments. Don't stop looking for answers, because the answers ARE out there!

I think before I was getting 28gm and he has increased it for this next series. I was wondering if they might put in a port since I bruise so bad and I have poor veins. I can't imagine what my arms will look like after 24 infusions.
Mike

I hope you get a port. I don't have any experience of it myself, but I've noticed people on this board who have them say they love them. I find IVIg exhausting, myself. I don't know how much is a reaction to the infusion and how much is just the ordeal. Maybe if you didn't have to deal with the needles it would be less of an ordeal.

Abby

It usually takes them 2/3 tries to get a vein. So take best choice and that's 48 sticks!! Yuck :mad:

A saline lock would work as well. Could use it for 3 days and remove until the next week. You have to be a wee bit careful, but if you're weak enough to warrant so much IVIG, that shouldn't be a problem.

Ports are best for long terms, however! It is a fairly invasive procedure to implant one, so probably not something you can schedule on short notice.

Good luck.

So they would leave saline lock in for 5 days?

They are good up to 7 days. You would have to self-flush (or have a helper do it) with saline twice a day. A hep lock would also work, and I think you could go all day without flushing it.

GET A PORT! I can't recommend it enough. I have very tiny veins and they were having to stick me anywhere from 2-5 times. I got a port about 2-1/2 years ago and have never regreted it.

Does the doctor have to order it or can the infusion center do it on their own?
Thanks for your help
Mike

Everybody on this site differs on the frequency of our infusions and most of us get 1 gm per kg of our weight but what your Dr. wants to do is way outside the realm. Please keep us posted if you decide to do this.

Tony

I would think the nurses at the center could do it. My home health nurse did. Ask for it and if they balk, tell them to call the doc, but I certainly wouldn't let them start poking around until it's clear what will be done. Also, have them use an inflated blood pressure cuff on your arm instead of a tourniquet---MUCH easier for them to find a vein.

Thanks for the tips.
Mike

Re: veins
 

Just a thought, If your veins are bad, and you need all these IV treatments, can't they put in a semi permanent one so that your arms don't get so beat up? I have heard that this is a possibility when this kind of therapy has to happen. ginnie

I had my port put in my a surgeon (can't remember exactly what type of surgeon). I told my neuro I wanted a port and he referred me to the correct doctor. As far as being invasive, it was done in the doctors office under a very light anesthesia (I was awake for most of the procedure). They used lidocaine to deaden the incision site and from there on, it was fairly easy. It hurt worse when I had a PIK line installed in my arm when I was in ICU. They used lidocaine for that also.

Good luck with whatever you chose.

I have had both treatments. And I dont feel IVIG has helped me ever really. But plasmapheresis has. Tho doctors say there is more risk and side effects with plasma, it has been the opposite for me. No bad side effects with plasma and super bad migraines and flu symptoms with IVIG. The joys of MG. LOL :eek: