IVIg Question

Have any of you had the IVIg treatment? If so what were the side effects if any and did your platelet count improve and if so for how long?

Thinking about receiving IVIg also had Rituximab treatment.

Thanks.

Hi, G. If my counts drop below 20, the treatment I get is IVIG. I'm usually down and out for the next three days, but everyone is different. It didn't make me sick like this until after I had my spleen out. I can't get Rituxan (Rituximab) here.

Good luck with the IVIG.

The first treatment I had when I was diagnosed was a combination of lots of prednisone and IVIG. I had much less than 10k counts at the time of diagnosis (probably around 1k, very low numbers are hard to get accurately). The IVIG bumped me up to 150k on the first day, 400k by week later, 200k the week after that, 50k two weeks later, and so forth. In other words, it worked really well, but not for long.

I only had a very mild, wheezy sort of reaction during the infusion, and when they slowed the rate, I was fine. I got a total of 140 grams of IVIG, in to 70 gram infusions, on consecutive nights.

Marcus

My third course of treatment was IVIG (after the initial pred then dex failure.) I did 2 consecutive days every 4 weeks for several months until I switched to my currect treatment (rituximab). From my viewpoint here were the pros and cons of IVIG. Please remember this is just my experience:

Pros:
Quick response - usally raised my platelets from the 20's to the 140-180 range within 2-3 days
faster infusion time - the first infusion is given very slowly, but after they realized I had no reactions they put it on a pump and I would be done in about 2-3 hours
Quicker time to feeling 'normal' - With rituxan I'm out for at least 2 days, on the couch, running a fever. IVIG gives me a headache (see cons) but it's bearable and I can go back to work pretty quick.

Cons:
Response not sustained - My hema warned me of this before I started IVIg. For me (and most) I get an initial spike, then a pretty rapid decline. I was on a 4 week cycle
Lots of infusions - if we use Ritauxan as a comparison I go in for rituxan 4 times (1x per week for 4 weeks) and then don't go back for at least 6 - 7 months. with IVIg I would have gone in 12-14 times in that same time period (my main reason for Rituxan over IVIg)
Headache - pretty well documented side effect mine weren't severe but some people do get them pretty bad.
Chance of remission not high - the rate of going into remission with IVIg are barely higher than the spontaneous remission rate(with no treatment.)

I'm sure there are others but those would be my main ones.

I had a double dose of IVIG....24 hours apart. I had only a headache later and felt a little tired. Nothing else. My platelets soared! I was at 400,000 a week later and stayed over 65,000 for 6 months. I started at about 25-30,000. I was pleased....just didn't like to be in the hospital for two days.

I had IVIG when I was first diagnosed as well as Pred. My numbers slowly went up from 8 to 209 in four days. But that only lasted 4 weeks. Haven't had it since June 2009. I had a really bad headache a couple of days after, but it was bearable.

For the last 5 months, every 4 weeks I have 2 days as a day patient having 3 bottles each day Only had a mild headache. In the past had a fever. Twice i have had 19 bottles as an inpatient but it didnt last much longer than 6 bottles.

My teen has had IVIG three times for low counts and for low count accompanied by nonstop nosebleed. The first time, the side effects were so severe, she returned to the hospital to rule out a head bleed. Then, we read more and learned the following strategies to help hold those side effects back: 1) good hydration, before, during, and after (encourage fluids); 2) tylenol before, during, and after; 3) benadryl (diphenhydramine) before, during, and after. "After" means continue for a day or two after the infusion ends. The first time, she had been pretreated with tylenol and benadryl, but it wasn't kept up during and after the infusion, because she tolerated the infusion and had no side effects during the hospital stay. Then, we got home, and about 24 hours after the infusion ended, she was having "the worst headache of my life." Those are ER buzzwords for a headbleed headache, and this kid had migraines in the past. If this was worse than a migraine, she needed a CT. So, after reading up on it, the second and third time she had IVIG, we did made sure the tylenol and benadryl were kept up. She also was given a low-dose decadron pill to take once a day for a few days after. We like IVIG for a "rescue" treatment, because she gets a good response that lasts a few weeks, and usually plateaus at a safer level than her pre-IVIG level. On her third treatment, she did so, and then rose to normal and has stayed at or near normal for nearly two years. IVIG is not known to give a permanent remission, but I believe it helped her stay at a safe level until her own system righted itself.
Norma

I have had IVIG twice when my platelets needed to be upped for surgery, and once when I came off Prednisolone prior to Retuximab it works very quickly raising my platelets from about 15 to 143 in 48 hours, no side effects after the infusion but I have to have antihistamine because of shivers and difficulty breathing during the infusion.

The effects lasted about 6 weeks.

Heather

Hi, I have been on IGG for years now. None of the other treatments worked for me.
I will not try Rituxamab due to the fact that my splenectomy left me with a very weak immune system. Anyway, you look like you've tolerated the IG you had fairly well. It is important to not take the IG too fast. Only you can judge this for yourself. It took me years to find the right product and speed. The treatments should start at about 60 on the pump for the first 30 minutes and then gradually raised. My system cannot tolerate it at a high speed, no matter what the nurses say, due to side effects. Taking Immune Globulin at a fast rate is not rec. by any Pharmaceutical Company.
I was diagnosed in 1983 and have been with this group since 1998. I hope the Rituxan works for you and does not leave any long term effects. My advice to anyone on any treatment is to read, read, read and search out anything you are going to try. You won't regret it.
Hugs and Blessings,
Yvonne W.

Yvonne! You made it!

Yvonne,

remember me? Lynn-Stevens mum... Long time since I have been on this site, I had to register again..lol

How are you sweetie? Hope things have gotten better for you. Steven was discharged by his hemo in 2008. 10 yrs after dx.. he is now 21 yrs old and doing great.. That is him wearing the black t-shirt the one in Red is my oldest John 25yrs..

my email lfarqu@hotmail.com
if you wanna get in touch..

Love, Hugs and Platelets
Lynn

IVIg is the only treatment that has ever raised my counts, and I have tried pretty much everything. I use it in a pinch, it will raise my counts to around 90 or 100, and lasts 72-96 hours. Fortunately, I don't get many side effects; headache and feeling flu-ish are common but benadryl and steroids control it pretty well.

Be sure to check your insurance coverage. It aint cheap.