Would you try Rituximab?

[Sidereal]

Yes, 20 of 29, to be exact . But six of nine placebo patients of the older study responded this time to RTX, which is also two thirds.

Yes, I noticed that. I think that little tidbit is further evidence that what we're seeing in these studies are real effects, not some weird fluke.

People are understandably jaded, though, @DanME. Some of us here have been sick for decades and have seen many supposed treatments come and go.

 

[DanME]

Yes, I noticed that. I think that little tidbit is further evidence that what we're seeing in these studies are real effects, not some weird fluke.

People are understandably jaded, though, @DanME. Some of us here have been sick for decades and have seen many supposed treatments come and go.

I know. But the stuff I see and hear about Fluge and Mella's work is very well conducted and thought out. The main purpose of the open label trial was to develop a treatment scheme and to see, if very risky side effects occur. Now, they are conducting the phase III trial, which is large enough, double blinded, has a good treatment scheme, good substudies etc. If you listen to their interviews, you see how kind and intelligent they are. They actually listen to the patients and respect them. Otherwise, they never would have gotten the idea of using RTX, Cyclo or NO. They really want to help and do good scientific work. I have no doubt about that. Also they never say, this is an autoimmune disease, this is not infectious...etc. They are careful, like a good researcher should be.

 

[Sidereal]

If you listen to their interviews, you see how kind and intelligent they are.

I agree.

 

[msf]

I agree, some of the results are amazing!

I tried to find info on the long-term effects of Rituximab, and found this:

'The long-term side-effects of rituximab aren’t yet fully understood because it’s a relatively new drug.'

http://www.arthritisresearchuk.org/arthritis-information/drugs/rituximab/possible-side-effects.aspx

I can see why some people don't want to wait until it's fully understood, though.

 

[msf]

And this study: http://www.medscape.com/viewarticle/771063

NB// Some of these patients were also on Methotrexate.

 

[msf]

From the article above: 'Patients are always advised to have influenza vaccination prior to RTX therapy, and yearly influenza vaccination thereafter, but unfortunately definite data for patients who have received the vaccine are not available.'

Bad news for those worried about vaccines!

The 3rd page of the article is very relevant to the discussion.

Page 4 too.

 

[geraldt52]

...I reported a drug side-effect to my GP many years ago, and he just looked at the list of known side-effects, then said that it wasn't on the list so couldn't be due to the drug! He was supposed to report it...

Is there anyone who has actually experienced a doctor taking a reaction to a drug seriously, and reporting it? I've found it rare that they even take it seriously, and I have never seen one bother to report it...even when it was blatantly obvious that the drug was the culprit. It's as though they can't chance admitting that they gave you something that made you worse...even though you aren't even blaming them.

I'd probably go for Rituximab, but probably not quite yet...until the current M and F study is unblinded. As a long-termer I share the fear of drugs and supplements making me even worse...

 

[Snow Leopard]

I would try it if I could afford it!

 

[EtherSpin]

I would not try rituximab, and probably not any other new(ish) drug either. I have two main reasons.

1. Anyone taking one of the newer drugs is effectively acting as a 'guinea pig' with regard to long-term adverse effects, as they are simply not all known. Some are already known for this one, and I do not wish to experience them.

2. I am a vegan and will not knowingly use any product that has involved harmful animal use in its production. It appears that rituximab does involve such use.

.

vegan here too but all my activism (including catering for my kids parties and knocking peoples socks off with amazing cuisine) are out the window since becoming moderate ----> severe and the drug would enable me to do a lot more (including more active input in raising my vegans kids )

 

[MeSci]

vegan here too but all my activism (including catering for my kids parties and knocking peoples socks off with amazing cuisine) are out the window since becoming moderate ----> severe and the drug would enable me to do a lot more (including more active input in raising my vegans kids )

It might - but it doesn't work for everyone.

 

[Violeta]

They certainly are working like crazy to find a drug that relieves symptoms and at the same time doesn't cause healing. That's what pharmaceuticals are for.

 

[JaimeS]

Doctors don't report adverse effects? You mean they're afraid they could be criminally liable? Le gasp!

Seriously, same thing happened to me with hydrocortisone. The doctor looked me in the eye and said it was "impossible" for me to have had an adverse reaction to it. I go home, go online, it's not super-common but there are six articles on pubmed about it, so not exactly unheard-of, either! They also told me firmly that reactions had to happen immediately to be 'real' when a Type IV hypersensitivity reaction by definition tends to occur two or three days after the initial insult.

I would take it, I think. I'm minor-moderate most of the time, but the lure of being completely well is really enticing.

-J

 

[ghosalb]

It would be interesting to know how many patients of Drs. Mella and Fluge declined to participate even though it was offered free (state/donation financed) and with two very good doctors/researchers. Clearly quite a few young and not so sick patients took risk, participated and rewarded. I have gone from severe to moderate but homebound. If I respond, it will probably be temporary because of my age but I will do it. What is there to lose...this crummy existence ?....ha ha ha....I must add that I have never been more at peace with this decease since starting meditation(in a reclined position) two years ago.

 

[NicholasNYC]

there is a rituxim study just underway overseen by dr nancy klimas in miami. i was invited to take part in the study, but i am too ill to move and it requires 6 mos in either miami or nyc. also, i did not want to relocate and then end up getting the placebo! (i am no longer in nyc)
from what i have learned the results are the usual frustrating mix that those of us with this illness are used to hearing: it helps some patients, doesn't help others, some it helps briefly, some end up feeling worse. just like with ampligen, etc.
believe me, if i heard it was working wonders i would spare no expense or hassle to get there and get the IV in my arm.
but anyone who has the ability to do so, and is another CFS sufferer desperate to get better, pls get in touch w dr klimas and let's get this trial rolling...

 

[beaker]

there is a rituxim study just underway overseen by dr nancy klimas in miami. i was invited to take part in the study, but i am too ill to move and it requires 6 mos in either miami or nyc. also, i did not want to relocate and then end up getting the placebo! (i am no longer in nyc)
from what i have learned the results are the usual frustrating mix that those of us with this illness are used to hearing: it helps some patients, doesn't help others, some it helps briefly, some end up feeling worse. just like with ampligen, etc.
believe me, if i heard it was working wonders i would spare no expense or hassle to get there and get the IV in my arm.
but anyone who has the ability to do so, and is another CFS sufferer desperate to get better, pls get in touch w dr klimas and let's get this trial rolling...

Curious: If it is "just under way" how do they have results ?

 

[meadowlark]

I'm a '7' on the PR scale and I answered 'yes'. In a heartbeat.

Can someone give me a link to this scale? I've searched, but brain fog is intense these days.

I estimate that I'm 80% apartment-bound, and more than 50% bedbound. The pain is usually agonizing, and I haven't yet found a way--or been given a prescription--to lessen that. I would try rituximab in a second. No way its side effects could be worse than what I experience now.

 

[SOC]

Can someone give me a link to this scale? I've searched, but brain fog is intense these days.

Click on your name at the top right of the page. Click on Personal Details. Scroll down to Activity Level. The scale is right below the input box.

 

[NicholasNYC]

Curious: If it is "just under way" how do they have results ?

they definitely are nowhere close to having full results (as far as i know they have just recently begun). this is just anecdotal from a discussion with my doctor, who is also fielding patients for the Klimas Rituxim study. I think they have just begun, but when I asked her if it was worth it for me to come back to NYC to take part in study, she said 1) she wouldn't want me to uproot and get placebo; and 2) the results are mixed thus far.
I will give you my doc's name if u like (actually i just noticed she is named in my account info), she is an NYC CFS specialist, if u are a longtime patient I'm sure you could guess. But I would not want to disclose our conversation in a public forum, as it was private and personal.

 

[meadowlark]

Click on your name at the top left of the page. Click on Personal Details. Scroll down to Activity Level. The scale is right below the input box.

Thank you! Light has now dawned.

 

[Gingergrrl]

No way its side effects could be worse than what I experience now.

It could be for me if Rituxan gives me anaphylaxis that kills me or the amount of fluid gives me pulmonary edema like I got from the last time I attempted an IV (b/c with MCAS the fluid doesn't necessarily go where it is supposed to.) I am *not* saying that any of this pertains to you or anyone on this board but me, but there are cases where it could indeed make someone worse.