Ivig????

[jpjd59]

The doctor is thinking about starting my daughter on IVIG treatments. Has anyone had any experience with this type of treatment? (Did it work, side effects, etc.) Thanks

Pam

[HopeSprings]

Curious - what's the Doctor's rationale? Has an underlying condition been identified?

[arizona girl]

Yes, I have been on it for two years. What are the details of your daughters health again and why is the doctor suggesting it? I've posted a bit about my experience with it, if you want to read more. Do a search on my name and ivig and that should pull up my related posts.

I'm happy to share the pros and cons with you and answer any questions I can.

[Christy_D]

My son's friend he met at the Mayo program did those treatments and were helpful to her. She had many issues though and I'm not sure why she was doing it. She had some autoimmune issues.

[jpjd59]

Naomi:

The doctor believes that when my daughter had a virus back in June of 2011 that it caused Gillian Barre Syndrome which damaged nerves and when he ran some type of liver function test he said that it came back saying that my daughter has genetic problem where her liver can;t metabolize things well and that is why she has been unable to tolerate any meds. He said that normally he would start her on a steroid but since she has been unable to tolerate steroids (along with many other meds) he wants to try IVIG.

Arizona Girl:

Two years on IVIG - WOW!!! Have you noticed a big improvement in your symptoms? I would love to know the pros and cons that you have experienced with IVIG. (The doctor said that she will probably get a headache from the treatments, but beyond that I am not sure what to expect). Feel free to PM me with your experence.

Thanks!

Pam

[brethor9]

actually my internist has just mentioned this treatment to me as I am not responding to meds very well and now possibly have peripheral neuropathy......apparently he said they are now using as off-label treatment in alot of illnesses including neuropathy, CFS, etc....he believes I may have an underlying low grade chronic infection and that adding the immunoglobulin antibodies may help my immune system.....Arizona Girl; I would also love to hear any info and input you have on this treatment

Bren

[arizona girl]

Pam, I'm getting ready for company coming in for the week. Would love to help you with this, but don't have time to do that right now.

A lot of what of experienced I've already posted. So search my post for ivig and they will pop up. That will give you a start. IVIG is used for GB, but usually at the time of the attack. We did have one member who developed stiff persons syndrome after her gb attack. Last I heard she was doing pheresis for that, improved and we haven't seen her in a long time.

I was just asking about the test for drug metabolizing. Perhaps you could post that for everyone when you get a copy of the labs.

Yes, I've had improvements with the ivig, slower then the pheresis, but improvements. I think ivig is easier to do then pheresis and not as frequent. It can eventually be done in the home or subq.

But there is a lot of stuff that should be considered before starting and things to do during infusion to keep side effects down. I've already posted most of that stuff. So, please take some time to read it. You can also do your own google search for IVIG. There are also better brands then others. It should be done in a medically monitored facility in the begining in case of reaction.

This is not something to rush into and you will have to pass insurance hurdles for approval. It is an expensive treatment, most can't afford without insurance.

[jpjd59]

Pam, I'm getting ready for company coming in for the week. Would love to help you with this, but don't have time to do that right now.

A lot of what of experienced I've already posted. So search my post for ivig and they will pop up. That will give you a start. IVIG is used for GB, but usually at the time of the attack. We did have one member who developed stiff persons syndrome after her gb attack. Last I heard she was doing pheresis for that, improved and we haven't seen her in a long time.

I was just asking about the test for drug metabolizing. Perhaps you could post that for everyone when you get a copy of the labs.

Yes, I've had improvements with the ivig, slower then the pheresis, but improvements. I think ivig is easier to do then pheresis and not as frequent. It can eventually be done in the home or subq.

But there is a lot of stuff that should be considered before starting and things to do during infusion to keep side effects down. I've already posted most of that stuff. So, please take some time to read it. You can also do your own google search for IVIG. There are also better brands then others. It should be done in a medically monitored facility in the begining in case of reaction.

This is not something to rush into and you will have to pass insurance hurdles for approval. It is an expensive treatment, most can't afford without insurance.

ArizonaGirl:

The test that the doctor gave my daughter was a CYP2 test to check for drug metabolizing.

[leydengs]

My son was given that for a autoimmune platelet disorder he had called ITP but that's the only time I've heard of IVIG being used, that's very interesting!

[jackiemxoxo]

I had plasmapheresis back in 2010 when I first got sick because the doctors thought it might be autoimmune related and a viral attack. It's debatable about how much it really helped me but my mom swears I got better from it. The doctors didn't check my calcium levels at the time so that was a big mistake because it left me feeling awful from that but otherwise it can't really hurt. Like someone else previously mentioned, the sooner the treatment the better cause of the reversal of damage and such. However, IVIG is used for a lot of other reasons and the one you mentioned might help if the doctors think it can. I know its a lot easier to administer than plasmapheresis but there is a higher chance of rejection or allergic reaction (because the donor amount is higher in IVIG than plasmapheresis) so make sure you read up on those and look for any signs your daughter might be having to it.

[E Soskis]

I was on IV immune globulin for over a year - it has a lot of side effects and is very expensive but, it reversed my symptoms and kept me alive. It quit working after about a year and I have since moved to plasma exchanges. If you have an autoimmune-related diagnosis, immune globulin is standard first line treatment. It works terriffic in some people and not so much in others. The only way to know if it will work is to try it.

Side effecfts vary - some severe and some not so severe. I've seen some kids sail right through it without barely a problem. I had horriffic side effects including aseptic meningitis, allergic reactions, and profound hypotension.- but, I was almost dead when I was started on it. I was given only a few months to live and immune globulin was a "last ditch" effort that thankfully, worked!