Risks of IVIG/Hizentra therapy?

[Ocean]

For those who are low in an IGG subclass and take this or considered taking it, did your doctor discuss the risk of contamination or other risks with you, since this is a product derived from human blood? Did you think it wasn't significant enough to prevent you from getting the treatment or did you decide not to get it? Does anyone know how significant this risk might be?

And while I'm asking, I may as well also ask, has anyone found their overall health and/or CFS symptoms improved after getting this treatment?

 

[ukxmrv]

Hi Ocean,
I read about the risks and belonged to another patient group when I tried IVIG and we discussed this. If my doctor mentioned it I have forgotten. It was a few years ago. Sadly, I didn't have any health improvments from the IVIG.

 

[Ocean]

Thanks Ukxmrv. I guess you decided the risk was not strong enough to prevent trying it. I wish I had some more info on how strong the risk is. Do you know how low you were on subclasses? Were you low in one or more than one? Thank you!

 

[Ema]

I'm getting ready to start Hizentra this month for low subclass 3 deficiency.

I know there is a risk since it is a blood product but the risk of the constant infections seems greater to me. I don't want to be on antibiotics and antivirals forever! I guess I look at it the same as a blood transfusion - if it's necessary, the benefit outweighs the risks. But I guess I will find out!

I know a few people from another board that have done Hizentra and have seen improvements though I think it is common to feel kind of crappy and flu-ish after the infusions especially the first few.

 

[Ocean]

Ema, do you get a lot of infections? What kind?

My doctor felt I should take it only if the total of my subclasses was low or if I was getting a lot of lung, respiratory type infections, which I don't. I guess I just wondered if it might help my overall condition even though I don't get those types of infections regularly.

Did your doctor give any numbers or anything as far as percentage of risk or anything like that? What type of doctor is prescribing it to you?

Thank you so much.

 

[Ema]

Well, so far I've been diagnosed with EBV, HHV-6, CMV, and Lyme. I'm taking antibiotics for the Lyme and just started Famvir. My doctor feels like there is a "hole" in my immune system due to the low IgG antibodies and that perhaps the Hizentra can help close that hole so my body is better able to fight off the infections by itself rather than having to rely on the drugs. She's primarily a Lyme doctor (LLMD) but has been very open minded and helpful in treating me.

No, I haven't ever seen any quantified estimates of risk but I would assume it would have to be pretty low. If people were having lots of trouble with it, it would get pulled from use pretty quickly. Honestly, I've thought twice about starting it since I've been feeling so much better (knock wood!) lately but I really feel like in my case at least, it is worth a try.

 

[Ocean]

I feel the same way as your doctor about my situation, if I go by my personal guess. My doctor doesn't believe in diagnosing EBV, CMV etc, saying they are old infections or there is no treatment for them anyway depending on the particular infection. I guess I probably just need to see someone else if I want to try things like Hizentra and LDN.

My IGG3 dropped even lower than it was a couple years ago, correlating with my deteriorating condition. I think the doctor I've seen is just very conservative but then so are most mainstream docs in terms of stuff like this at least in my experience. I can see how a Lyme doctor would be more open. I may just have to bite the bullet, pay out of pocket and see a doc. who is more willing to try these things. I hope the Hizentra really helps you. I'd love to hear an update sometime. Wishing you great luck with it! Thanks for all the input, it's really useful.