My Rituximab experience with RA and ME

[deleder2k]

Is this info published somewhere ? Wondering your source.-- would like to share info w/ my dr. Thanks.

It's from the project page for the commencing Rituximab multi centre study at the Regional Committees for Medical and Health Research Ethics web site in Norway. They are upgrading their web site this weekend, but here's the cached version of the site translated:

https://translate.google.com/translate?hl=no&sl=no&tl=en&u=http://webcache.googleusercontent.com/search?q=cache:dm70TfxtEzwJ:https://helseforskning.etikkom.no/ikbViewer/page/prosjekterirek/prosjektregister/prosjekt?p_document_id=455844&p_parent_id=461996&_ikbLanguageCode=n+&cd=1&hl=no&ct=clnk

 

[Nielk]

Since my first infusion three days ago, I have experienced some side effects. I had GI issues with nausea for two days along with weakness/light headedness.

At present, my upset stomach seems to have calmed down but, the weakness (more than my usual) remains.

All in all, not too bad so far.

The nurse at the infusion site said that some start seeing improvements in two weeks. From the Norwegian trial though, it seems that ME/CFS have a delayed start to their improvements.

It will be interesting to see when I will start feeling a positive change. (of course, assuming that I will at all)

 

[deleder2k]

Almost all patients from the Norwegian study who experienced an effect did it from month 2 to 9.

 

[NK17]

Crossing all my fingers for you @Nielk and hoping this is only a post infusion momentary phase of discomfort.

From all I've read the responders in the Norwegian study, as @deleder2k has rightly said, had a delayed response, not of the more immediate kind usually seen in RA.

Let's hope you'll be able to kill two birds with one stone !

Wishing you a smooth and sustained recovery.

 

[optimist]

I really hope this can be a potential and affordable cure for all of us! I believe I heard somewhere that this infusion is super expensive if one would take it today and pay for it by your self? Anyone who knows?

Wishing you all the best @Nielk! And thanks for sharing your experience!

 

[snowathlete]

@Nielk I really hope this works well for you. I hope it kicks RA's butt, and ME's too. Wishing you the best, and thanks for sharing your experience; very interesting.

 

[deleder2k]

I really hope this can be a potential and affordable cure for all of us! I believe I heard somewhere that this infusion is super expensive if one would take it today and pay for it by your self? Anyone who knows?

Wishing you all the best @Nielk! And thanks for sharing your experience!

Yeh, its expensive. A think each infusion is a few thousand dollars worth. Before "copies" of Rituximab show up (US patent is valid to 2018 I think) I think you can expect 5-6 g's per infusion. Expensive stuff.

 

[Nielk]

Does anyone know if the first ME patients in Norway to improve on Rituximab were also on Methotrexate?

 

[deleder2k]

The first patient that launched the idea that M.E could be treated with b cell depletes were treated with Methotrexate, but not with Rituximab if I am not wrong.

 

[optimist]

@deleder2k Thanks for the answer! Do you, or anyone else, know if it is possible to get infusions in Norway if you pay for it yourself?

 

[LaPerla]

No, it's not possible to get infusions in Norway, not as far as I know.

 

[optimist]

How about any country in Europe?

 

[LaPerla]

I don't think so. I have only heard of Koegelnik.

 

[optimist]

I'm sorry, I don't know that name?

 

[LaPerla]

A. Koegelnik, California. I think it is some info in the forum if you use the "search" function.

 

[Nielk]

Dr. Andreas Kogelnick in Mountain View, California - http://www.healthgrades.com/physician/dr-andreas-kogelnik-yxc88

 

[deleder2k]

@deleder2k Thanks for the answer! Do you, or anyone else, know if it is possible to get infusions in Norway if you pay for it yourself?

Not possible. I wish it was though.. Why can't clinics in Europe start treating patients with Rituximab? Some of us have been bedridden for many, many years. The can treat people with psoriasis with this stuff...

Open Medicine Institute | Collaborative Research to Fast ...

Dr. Kogelnik works there. Heard its about 5-6k(?) per infusion.

 

[optimist]

The problem is that if you need to take several infusions over several moths, you would need to move to the states... so that would add up with flight ticket, housing and infusion cost... and the risk of the infusion not having the desired effect.

 

[deleder2k]

It depends on your health situation, but you don't necessarily have to move there. If you receive 1 infusion the 1st day, then the 14th, and then after 3, 6, 9 months. It will cost a lot though. The patent is expired in Europe, so can just pray that the the competitors are ready to launch their version of Rituximab soon.

 

[Tired of being sick]

Nielk

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Low levels can make your bones, muscles,ligaments and joints deteriorate prematurely...