Rituximab in Australia

[hixxy]

Now, if its repurposing an already approved drug, that can be just a few years from testing to trials to public use. My best guess is that it will still be about five years or so. However some doctors might be happy to prescribe such a drug for off-label use much earlier than regular approval is granted.

From what I've been told this is what they're aiming for.

 

[heapsreal]

Just a thought. Dr peterson is connected with griffith .

Makers of ampligen were trying to get it approved here in oz and peterson is still a big fan.

A recent post about peterson he mentions ampligen as being the most efficient drug he has seen in cfsme and one of the few drugs that can increase nk function.

I have never read that he's used rituximab though.

He's also a fan of ivig also.

Just thoughts

 

[digital dog]

I would contact CFS specialists and get them interested....imagine how much money they could charge if they were the only doctor in Australia offering Rituximab!

Dr Lewis is a lovely man at CFS Discovery in Melbourne. He prescribed me klonopin which made my life a living hell but he was a decent bloke. I'd give him a call and see what he thinks.

Im in the Uk now...unfortunately.

I am surprised that Oz is so skeptical about CFS as one of your footie players had it and when I was there 14 years ago there was a lot of media coverage about him.

 

[heapsreal]

I would contact CFS specialists and get them interested....imagine how much money they could charge if they were the only doctor in Australia offering Rituximab!

Dr Lewis is a lovely man at CFS Discovery in Melbourne. He prescribed me klonopin which made my life a living hell but he was a decent bloke. I'd give him a call and see what he thinks.

Im in the Uk now...unfortunately.

I am surprised that Oz is so skeptical about CFS as one of your footie players had it and when I was there 14 years ago there was a lot of media coverage about him.

It still needs to be approved by the health department and probably another step for the government to cover the cost. Australia is too conservative and would have to wait for other studies to come out unfortunately .

I think it was gcmaf that the department of health stopped drs like dr lewis from prescribing also.

 

[digital dog]

Could you set up an online petition in Australia for the health department to look into trials?
Sorry, I do realise how complicated this all is. I wish it was easier.

 

[heapsreal]

Could you set up an online petition in Australia for the health department to look into trials?
Sorry, I do realise how complicated this all is. I wish it was easier.

There is research being done here on biomarkers and they are trying to come up with a diagnostic test for cfs. So im sure they have it on the cards. My guess is they are waiting on results of overseas trials and then they will do their own here. Each country has to invent their own wheel unfortunately ?

Maybe the biomarkers they are working on will better select patients who will be responders

 

[EtherSpin]

I would contact CFS specialists and get them interested....imagine how much money they could charge if they were the only doctor in Australia offering Rituximab!

Dr Lewis is a lovely man at CFS Discovery in Melbourne. He prescribed me klonopin which made my life a living hell but he was a decent bloke.

I.

EDIT - removed question on clonazepam as it was answered elsewhere in the thread. -
continues....

as for them using ritux, don't know about that actually. if the results of further trials are more conclusive then perhaps but their order of systems and symptoms for CFS has the gut as a problem before the immune system and I've not heard of anti virals being used and I mentioned I was keen (reactivating shingles,CMV,EBV for me) and they would like to keep assessing the gut with tests and more rounds of treatments for that as that would make more sense with their theory if its correct, fix the gut, immune system bounce back and all that.
I don't care so much about the actual root cause if ritux courses manage to make people recover for a minimum of 5 years with each infusion regime. only minor imposition to get that done for getting your life back

 

[kangaSue]

I haven't verified this personally yet as I'm still early on getting a diagnosis for this, but I was told by a lady from Adelaide who has Autoimmune Autonomic Ganglionopathy that rituximab is available in Australia to treat this, fully covered by Medicare in a public hospital.

As it's not a mainstream treatment for AAG either, I'm presuming that it might be able to be accessed for other types of autonomic or autoimmune dysautonomia so if you have something along those lines as well as a co-morbidity of CFS, you might be able to sneak in the back door by not seeking it purely for CFS.

Not too sure of the procedure at this point but I gather you also need to have the approval of the Therapeutic Goods Administration through the 'Special Access Scheme' which basically just involves the exchanging of letters from a medical practitioner which can be handled by your hospitals' treating doctor.

 

[kangaSue]

I forgot to make the point above that gut issues could be one of other autonomic dysfunctions that could gain you access to rituximab seeing as they are a frequently mentioned symptom in many with ME/CFS.

There is a newly described clinical entity that is a limited manifestation of autoimmune dysautonomia called Autoimmune Gastrointestinal Dysmotility (AGID), the prevalence of which is not well known yet.
http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction

The test panel for AGID is the same one they use to test for Autoimmune Autonomic Ganglionopathy (AAG) so, from what I can fathom, AGID is just another name for the restricted form of AAG.
http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/89886

This will be relevant for some with an IBS diagnosis as well. It may just be a rarity but, in trawling through online forums for information on AAG, it cropped up on a few occasions that AAG was diagnosed in some of those who were initially diagnosed with IBS. I don't have ME/CFS so wasn't looking for any connection with that but I have come across cases of people having co-morbidities of ME/CFS and AAG.

 

[Snow Leopard]

Not too sure of the procedure at this point but I gather you also need to have the approval of the Therapeutic Goods Administration through the 'Special Access Scheme' which basically just involves the exchanging of letters from a medical practitioner which can be handled by your hospitals' treating doctor.

For rare (and demonstrated by antibody tests) autoimmune disorders it might be covered by Medicare under special application.

 

[kangaSue]

For rare (and demonstrated by antibody tests) autoimmune disorders it might be covered by Medicare under special application.

Yeah, I think that is the same tie-in with the TGA though. I'm pretty sure my G.I. had to make an application through the TGA recently to prescribe me cisapride as a fully subsidised item through PBS/Medicare since it was declared a restricted drug. Either way, it's all just paper shuffling between doctors and bureaucracy.