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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Rituximab

D

digital dog

Senior Member
Messages
646
Hello,

I am new to this forum so please forgive me if you are sick to death of people asking about this new wonder-drug (on top of your every day sick-to-death constitution!)

Has anyone here tried it? Where can I read about your experiences? Also can I get hold of this drug? I'm planning on winning the lottery this weekend and when I do I hope to find a doctor (doctor, nurse, back street criminal) who is willing to inject this into my miserable excuse for a body.

Is this an option? Are there doctors out there treating patients with this at present?

I live in the UK but with my millions I could probably travel to just about anywhere. And if I win more than I'm anticipating, you can all come with me if you like.

Am I allowed to get just a little excited about this drug? I have hashimotos and a family history of lots of autoimmune crap...and of course I'll be minted by the weekend so that probably works in my favour.

Digital Dog.
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Hi, digital dog

Welcome!

If you go to the main forum page, just over half way down in 'Treatment and Therapy' there's a section for 'Rituximab: News and Research'.

A few forum members have tried rituximab. Off the top of my head, I can't think of any existing members who have had great results from it but we had someone join the forum about six months ago very exited about the improvement she had. It wasn't completely clear if she had ME/CFS but she went from being extremely disabled to basically normal - and very exited!!!

We recently had a brief discussion about getting rituximab privately in the UK since even on a best case scenario it's likely to be many years before ME patients will be able to get it on the NHS.
http://forums.phoenixrising.me/inde...tential-of-rituximab.38487/page-5#post-627186

I think it might still be a little early to think about private treatment. To me, it makes sense to wait until Fluge and Mella's Phase III trial is concluded.

Your foresight and financial planning to fund your treatment is awesome!
 
D

digital dog

Senior Member
Messages
646
Thank you for pointing me in the right direction. My financial planning is indeed 'awesome.' The fact that, like Sasha, I rarely buy lottery tickets is beside the point. We can but dream.

I'd definitely give it a go regardless of the side effects. My life is one big side-effect anyway so it's worth the risk to me.
 
D

digital dog

Senior Member
Messages
646
I've had a look and it appears that I won't be able to get hold of this drug for quite some time...unless I get cancer. I've always maintained that if I got cancer I would decline treatment as I am so sensitive to meds and would be quite content in leaving behind all this mess. Now I would be demanding rituximab.
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
digital dog said:
I've had a look and it appears that I won't be able to get hold of this drug for quite some time...unless I get cancer. I've always maintained that if I got cancer I would decline treatment as I am so sensitive to meds and would be quite content in leaving behind all this mess. Now I would be demanding rituximab.
Click to expand...
Just make sure it's lymphoma.
 
D

digital dog

Senior Member
Messages
646
'I'm dreadfully sorry to report that you have lymphoma cancer. I know this must be a great shock to you. Would you like some time to yourself to come to terms with this devastating news?'

'Are you kidding! It's the best news I've had in over two decades. Hook me up now before I keel over in excitement.'
 
A.B.

A.B.

Senior Member
Messages
3,780
The patient reports are mixed. A few people reported very significant improvements (a Norwegian patient of Fluge/Mella, one person here on the forums), one person had no benefit (one person here on the forum), another person experienced severe deterioration (a soccer player from Germany). We're hoping that the deterioration was an isolated thing but we don't really know because there is so little research.

In the studies there haven't been any severe adverse reactions and the response rate was about 2/3 so far.
 
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
A.B. said:
The patient reports are mixed. A few people reported very significant improvements (a Norwegian patient of Fluge/Mella, one person here on the forums), one person had no benefit (one person here on the forum), another person experienced severe deterioration (a soccer player from Germany). We're hoping that the deterioration was an isolated thing but we don't really know because there is so little research.

In the studies there haven't been any severe adverse reactions and the response rate was about 2/3 so far.
Click to expand...

Good summary. As a member of Norwegian ME-forums I`ll reveal that some more have reported significant improvements as well. There is no doubt that this is a "wonder drug", for a subset.
 
D

digital dog

Senior Member
Messages
646
Yes thank you Sasha. I think we are on the brink of exciting developments. At least these studies might wake up people to the severity of our illness.

I can't wait for those psychiatrists, doctors and social workers who label people mentally ill with ME to hang their ignorant little heads in shame.

I'm not sure it will help me but my biggest fear in life is that my daughter will one day get ill with an autoimmune condition and there will be no treatment. I now believe that there will be different treatments for all the subsets of ME/CFS in the next decade or so.

ABOUT BLOODY TIME!!!!
 
deleder2k

deleder2k

Senior Member
Messages
1,129
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