Is there any way I can be treated with rituximab privately?

[deleder2k]

If you don't see a major improvement at month 9 I would ditch the rest of the infusions. The chance that one will have a major response after 9 months looks low.

 

[snowathlete]

I don't know how typical my experience of this disease is, but basically I don't improve. I might have a week here and there where I think I may be 5% better than the previous week but it's nothing more than that and never proves true. The consistent trend throughout since I got seriously ill in 2008 is that the disease slowly gets worse. And when I consider that I think I had this disease in a mild form for many years prior to 2008, the trend from where I started to where I am now is a very steady slow downward trend.

My point is that it would be very obvious if I actually truly did get an improvement from any treatment. So I tend to think that the improvement suggested by the studies so far couldn't be explained by change of end points, so I'd be very surprised if Rituximab didn't work out.

My brother used to live in Stavanger.

 

[deleder2k]

Those who are wondering why the price is much lower in the private hospital in Norway than at OMI, CA.

- The cost of Rituximab is lower

- The infusion costs are much lower, $2800 versus $500-1000 (even though Norway is the most expensive country in the world).

- The Norwegian krone has plummeted approximately 30% against the US dollar and the Sterling after the oil price has halved.

 

[msf]

Marky90, do you not feel you can wait until more studies have been published? They may have already identified one of the subsets - are you going to be tested for those auto-antibodies?

 

[Marky90]

Marky90, do you not feel you can wait until more studies have been published? They may have already identified one of the subsets - are you going to be tested for those auto-antibodies?

I could, but the way I look at it is that I run the risk of the disease progressing. And also I find that the results from Haukeland are encouraging enough to go for it. Lastly I have various t-cell deficiencies, which is seen in a lot of autoimmune diseases. I just have a huge gut feeling it will work, i might of course be disappointed to say the least, but to wait for the medicine when its available.. Can`t do it. I`m also the singer in a band etc, and kinda need to get back to health soon for that to continue.

 

[msf]

I understand the feeling, but the Ritux science is progressing so fast that I would wait a bit if I was you.

 

[deleder2k]

I understand the feeling, but the Ritux science is progressing so fast that I would wait a bit if I was you.

But to get it for free (at least in Europe), we are looking at possibly 2018/2019 in Norway, and perhaps 2021 or something in the UK. That is a long wait.

 

[msf]

I think that´s optimistic for the UK. I didn´t mean wait because it will be cheaper, but rather because you might find out whether it will work for you or not without having to deplete your B-cells.

 

[Marky90]

I think that´s optimistic for the UK. I didn´t mean wait because it will be cheaper, but rather because you might find out whether it will work for you or not without having to deplete your B-cells.

Its a fair argument against. But my assesment is that i run such a low risk for life threatening adverse effects that the b-cell depletion is not a problem. Im also probably getting IVIG this month, so that would counteract some of the issues with being immunosuppressed. 3-5 years is as deleder2k pointing out, a significant haul of your life. I*m 25 years old, and I dont want ME to eat up the rest of my twenties if I have the possibility to change that outcome.

 

[deleder2k]

I think that´s optimistic for the UK. I didn´t mean wait because it will be cheaper, but rather because you might find out whether it will work for you or not without having to deplete your B-cells.

So perhaps we know more about possible responders in 2-3 years. If you know you will respond you will probably still have to wait until 2021++ if you live in the U.K. That is many years lost for those who suffer from a medium to severe degree of ME.

 

[msf]

I would wait until more is known about responders, and then pay for treatment, if I had the money.

 

[ukxmrv]

So perhaps we know more about possible responders in 2-3 years. If you know you will respond you will probably still have to wait until 2021++ if you live in the U.K. That is many years lost for those who suffer from a medium to severe degree of ME.

We are looking at the last working years for me before I become a pensioner. Obviously if I get Ritux and go into remission I'll try to get some work - if anyone will hire me at that age and with little recent experience or training. I have no assets and was trying to avoid retiring into poverty.

The 60's for my family are also when osteoporosis strikes and most of my aunts and uncles have had multiple joints replaced.

Every year we wait more of us die of course. Having a treatment like Rituximab could help with the suicide rate I hope.

 

[BurnA]

I understand the feeling, but the Ritux science is progressing so fast that I would wait a bit if I was you.

The way I see it is if they develop a test which can tell with near certainty if you'll respond or not then I can see sense in waiting. Will this be available soon ? Who knows but I think not in the next year or two but I hope I am wrong.

Therefore, given a choice , I can't see why I would wait.

 

[BurnA]

Sorry gregh286 but you have absolutely no idea how to weigh up the risks and benefits. Even I am unable to do that and I invented the treatment.

Professor Edwards do you believe or is there evidence that the damage caused to patients by ME/CFS is permanent ( and therefore could this be a factor in deciding whether or not to pursue treatment )
Thanks.

 

[Jonathan Edwards]

Professor Edwards do you believe or is there evidence that the damage caused to patients by ME/CFS is permanent ( and therefore could this be a factor in deciding whether or not to pursue treatment )
Thanks.

I think I have to pass on that. Too many unknowns.

 

[deleder2k]

I think the most scary part is possible brain damage. Several studies have shown brain abnormalities. I also know that someone say they are in remission after Mabthera with the exception of brain fog...

Lets hope that this is not the case for us.

 

[bthompsonjr1993]

It`s correct, I`m travelling there in November

Wow, thats awesome, good luck to you! Could you tell me how I could get into contact with that private clinic so I can inquire about receiving rituximab treatment from them?

 

[bthompsonjr1993]

I think the most scary part is possible brain damage. Several studies have shown brain abnormalities. I also know that someone say they are in remission after Mabthera with the exception of brain fog...

Lets hope that this is not the case for us.

My two cents is that permanent brain damage is not likely. I believe this because in mostly all of the stories I have heard about people recovering, they regain their mental clarity and cognitive abilities. Also, because I had an appointment with Dr. Montoya, whose team at Stanford discovered the brain abnormalities, and he told me, without doing any brain scans, that even though I can not operate cognitively like I used to my brain is not damaged and there is still the potential for recovery. Hope this can bring you at least a little peace of mind!

 

[deleder2k]

REUTERS EXCLUSIVE: Why the U.S. pays three times more for the world's top-selling drugs. http://reut.rs/1PaBbfT

Interesting about the pricing of Mabthera (Rituximab) in EU/UK versus U.S. Partly explains the difference in price.

 

[gregh286]

I see!

Yeah I live in Oslo, Norway It will be 7 times. One for the first appointment, and then infusions at start up, 14 days, 3 months, six months, 10 months and 15 months. I guess you could rent a place for the first two infusions, since its only 14 days apart. Hopefully youll get better/cured some time after the third infusion so it wont be such a hassle..

Hi marky.
So at this point you are not sure if they will give you the ritu?
You will know after the 1st meeting?

Good luck