Is Immunoglobulin available for ME/CFS in Australia?

[AndyPandy]

I have started researching this and so far have found out that immunoglobulin is considered to be a limited resource in Australia needing to be tightly controlled.

At blood.gov.au which is the website for the National Blood Authority Australia, I found the "Criteria for the clinical use of intravenous immunoglobulin in Australia".

Under the "conditions for which IVIG use is not supported", I found myalgic encephalomyelitis. No mention of chronic fatigue syndrome. ME is excluded on the basis of "conflicting evidence of benefit".

This relates to government funded IVIG. I don't know if IVIG is available to privately funded patients.

I don't know if subcutaneous immunoglobulin is treated differently.

I will keep looking into this, but would appreciate comments from others in Australia. @heapsreal do you know anything about this?

Best wishes, Andy

 

[heapsreal]

I have started researching this and so far have found out that immunoglobulin is considered to be a limited resource in Australia needing to be tightly controlled.

At blood.gov.au which is the website for the National Blood Authority Australia, I found the "Criteria for the clinical use of intravenous immunoglobulin in Australia".

Under the "conditions for which IVIG use is not supported", I found myalgic encephalomyelitis. No mention of chronic fatigue syndrome. ME is excluded on the basis of "conflicting evidence of benefit".

This relates to government funded IVIG. I don't know if IVIG is available to privately funded patients.

I don't know if subcutaneous immunoglobulin is treated differently.

I will keep looking into this, but would appreciate comments from others in Australia. @heapsreal do you know anything about this?

Best wishes, Andy

If you can find a dr to prescribe ivig and you pay for it privately i think its $1000 plus per infusion plus. So not cheap if infusions are fortnightly or monthly. Plus i think it puts the prescribing dr in a bad light by his peers.

I think one has to have a low igg immunoglobulin levels to get it prescribed, i dont think it matters if one has ME and low igg, they should treat the low igg.

interested also if others know any different??

 

[AndyPandy]

Thanks @heapsreal.

The NSW Health Department at cec.health.gov.au has an Information Bulletin about the National Policy on Access to Government Funded Immunoglobulin.

It mentions that if clinicians want to treat a medical condition with IVIG or SCIG which is not funded under the "criteria" they can order imported product from a commercial supplier. Clinician's hospital or patient to pay for it.

It sounds pricey, but if it works........

I think I will ask about it at my next appointment with the ME/CFS specialist. I am getting viruses back to back now with only short breaks between. Each virus takes about two months to get close to clearing and then I get another one. Also small splits at side of mouth turning into large areas of angular cheilitis.

Feeling progressively more debilitated. Spending lots of time in bed again these days.

I don't know if I would be considered bad enough for IVIG at this stage. Expect my diabetes doesn't help my immune system issues. Not sure of my IGG levels. Have increasing ANA levels 1:640 and not sure if IVIG would help or harm any underlying autoimmune issue that might be developing.

Has anyone in Australia been treated with IVIG or SCIG for ME/CFS alone? Would love to hear from you about how and where you accessed it and whether it helped or not.

Best wishes, Andy

 

[Marky90]

Hey Andy!

My understanding is that the strict IVIG-regime is due to cost and availability.

As a ME-sufferer this really pisses me off.

Im starting a campaign in Norway to let patients try IVIG at least one time. If it dont work, unfortunate, if it does - great! Theres no reason holding back when a lot of people get better.

The studies that didnt show any beneficial effects didnt have strict anough criteria to draw any conclusions.

As the Rituximab-study from Norway shows, we are probably operating with a subclass anyway.

There are several IVIG-stories with success in Norway.

Not unexpected as IVIG lowers the amount of own antibodies, which are the suspected culprits in a subclass of us.

 

[minkeygirl]

Teitlebaum has a protocol that uses it IM, which cuts down on the cost

Treat with gamma globulin (e.g., Gammastan): 2 cc by intramuscular injection (IM), once a week for 6 doses, or 4 cc every other week for 3 doses. (IM is much less expensive than intravenous delivery.) This drug can be a dramatically effective way to jump-start your immune system.