anyone experience with IVIG? (Intravenous Immuneglobulins)?

[loki]

I had hope to test out some injections of IVIG but it's hard to find a doctor that believes me and is about to treat this invisible disease, if you know what i mean...


however, feel free to share your experience with IVIGs!

 

[Remy]

I had hope to test out some injections of IVIG but it's hard to find a doctor that believes me and is about to treat this invisible disease, if you know what i mean...


however, feel free to share your experience with IVIGs!

I do SCIG (Hizentra) and I think it has been helpful. Immunoglobulins are very potent anti-inflammatories so I can't say exactly why it's helping...by replacing my defective antibodies or just reducing inflammation in general.

The best way I've found is to test total IgG and subclasses 1-4 along with IgM and IgA. If there are abnormalities, occasionally a doctor will be willing to prescribe. Getting insurance coverage is another story though...

 

[Cort]

Reports are mixed - as with everything. I talked to Mark Sivieri - FM doctor in Baltimore - he finds that it helps but is best done within a full package of FM treatments. Some people do really well - others don't do anything at all. I know one person who relapsed badly on it but we don't know if it caused it or not.

A Korean doctor Tae Park really touts the use of IVIG. If you have small fiber neuropathy in particular it's a good possbility...

 

[Cort]

I had hope to test out some injections of IVIG but it's hard to find a doctor that believes me and is about to treat this invisible disease, if you know what i mean...


however, feel free to share your experience with IVIGs!

In the US if you can get a diagnosis of small fiber neuropathy that can help with the IgG subclass deficiency that can help.

 

[Hope]

I've had seven IVIG sessions so far. I don't think it's doing anything. But apparently effects often are not seen until six months my doctor told me so am not giving up hope yet.
My immunologist agreed to them based on low natural killer cell function and low B cells.

 

[Who Me?]

I just got tested by a clinical immunologist

He ran total IgG and subsets, IgA and IgM.

If a doc actually specializes in clinical immunology they will know how to interpret them

MOst docs want you to do the pneumovax 23 vaccine challenge. I had the pneumovax 14 (idiot doc) so I'm doing the 23 along with another lab.

CVID is pretty common in us but most docs and insurance companies won't pay just because someone wants it. There had to be a specific DX that uses it for a treatment.

@Hope fhis Immuno told me nk cell functions was irrelevant. Before he saw my labs he said unless I had documented bacterial infections he had no treatment options.

 

[loki]

ok, thanks for the replies

 

[loki]

ahh, and if someone could PM me an IVIG shop on the net i would be really happy!

 

[Remy]

ahh, and if someone could PM me an IVIG shop on the net i would be really happy!

I've never heard of anyone getting IVIG online. I really don't think doing anything IV by oneself is a good idea...but that's just my .02.

 

[Who Me?]

@Remy there is a place to get immunoglobulin to do IM. The problem with that, aside from the obvious, is it has to be kept cold. I can't imagine how much shipping would be.

 

[Remy]

@Remy there is a place to get immunoglobulin to do IM. The problem with that, aside from the obvious, is it has to be kept cold. I can't imagine how much shipping would be.

IM is different than IV...and I still wouldn't do it. IgG is a blood product at the end of the day and that carries some risks that are amplified when the source is questionable. But that's just me.

 

[Who Me?]

IM is different than IV...and I still wouldn't do it. IgG is a blood product at the end of the day and that carries some risks that are amplified when the source is questionable. But that's just me.

Oh I know. I was just showing that if you're desperate you can get it. It comes with a free Guinea pig T- shirt.

 

[loki]

Oh I know. I was just showing that if you're desperate you can get it. It comes with a free Guinea pig T- shirt.

i just wanted to look at the prices... i mean, could be that there are sources where the stuff is cheaper than in german pharmacies, but you're right about that it carries risks on top of the cooling that's necessary