Rituximab Discussion

[Jacque]

Yes I think you are exactly right. Dr. K doesn't seem to be obsessed with WHAT it is in specific that caused this cascade of problems to occur...and he says it just seems to be the perfect set of disfunctions taking place causing the (perfect storm). He seems more interested in how the R "reboots" the immune system somehow... All in the research phase.

 

[Jacque]

Believe me this is HARD on me cuz I am an analytical Aquarian. I want to know WHAT ... WHY... HOW... and the reality is no one really knows...but this research will hopefully get them closer and closer. And to be on a treatment that may get me better only to possibly relapse isn't makin me too happy either... But at least I feel like i am helping to move things FORWARD... So frustrating!

 

[Firestormm]

I think that it was the ME Association in the UK that said a Rituximab trial would cost about £200,000 (have a feeling that someone asked them on their facebook page but cannot find it now). They do sound interested in a trial but don't have the money.

The problem wasn't necessarily the funding, ukxmrv, it was the interest (or lack thereof). From my understanding the MEA had not been able (yet) to find anyone interested in establishing and operating a UK clinical trial though they were willing to consider funding one and would probably need other partners.

 

[xrunner]

Believe me this is HARD on me cuz I am an analytical Aquarian. I want to know WHAT ... WHY... HOW... and the reality is no one really knows...but this research will hopefully get them closer and closer. And to be on a treatment that may get me better only to possibly relapse isn't makin me too happy either... But at least I feel like i am helping to move things FORWARD... So frustrating!

Hi Jacque,
more questions...you said you haven't had any side effects from your first infusion so far, are there any particularly which would you expect?
From what I've seen it seems to be well tolerated considering both what it does and that pwme are so sensitive to many.
How frequently are the infusions given over the 15months ?

 

[Jacque]

As I predicted Dr. Kogelnick got right back to me and said he would happy to consider a chat - But says he is doing an interview with a Dr. Cort soon and maybe we should wait until that is done and then post it here? He asked what the chat would entail. Tell me what all of you are wanting to ask him. I am guessing just INFO Q n A on Rituxan? He is willing to do it just wants a little more info!

 

[Jacque]

No reactions so far... My skin hurt after the infusion and I got real achey and took more Norco than usual...which was no worse than one of my BAD days. I have an infection in one of my breasts that comes and goes for years...and while I was getting infusion it flared up and then was gone 2 days later.. WEIRD! Usually once it flares it is game on..hot boob and all. Since I have been home no real changes except goin to bed earlier around midnight vs 3-4:00 am and am sleeping 12 SOLID hours... During day just feeling same ol CRAP... I did not get the nausea etc. There was one minute during the infusion about 30 minutes in where my vision got wacky and I felt very light headed...and I got a little freaked...but it was short lived and I did just fine for the rest of the infusion. I think we need to realize that is NOT like the dreaded chemo we hear so much about... Where you are so sick, lose your hair, etc. This specific chemo targets only the B Cells, I don't know if that is why it is much more tolerated.

 

[Jacque]

Ohhh. and....Infusions are given over 15 mo... 1st two are two wks apart and the others 3 or so months apart.

 

[Jacque]

Hey Kati...I was up for hours last night reading your blog... I so want to meet you... We sound so similar yet different. I do not have any GI issues I am CONSTIPATED...and don't have the terrible shortness of breath.. But so much of the other, mainly sore tailbone (my whole stinkin life) Take cushions to sit on everywhere and pads for motel beds etc.. so damn emberrasing. Have the severe weakness if stand too long and gravity pulling as you wrote. My calves are always swollen and thus I do not OWN a pair of shorts... I my legs are sooo ugly bc of this shit! POTS I too live my life on couch/bed... A good day is where I venture out to the couch and a really good day is when I go out to back yard and water my flowers and get mail... Good grief.. But I lay here and "hear" life goin on out there.... So sad!

 

[Bob]

For those who are up-to-date with the use and effects of R. in ME, could you pls help my understanding:
- it's still not clear why and how R works?
- do we know when we could have a better idea of the above?
- how stable have the improvements been in those who responded to the drug?

I can only answer generally.
As far as I understand, nobody knows why Rituximab works with ME.
There are theories that viruses live in the B-cells of ME patients, and are therefore killed by Rituximab.
But I think that Fluge and/or Mella suggested that Rituximab could possibly work via a different mechanism in ME, and that Rituximab could have unknown immune-modulating effects.
There has been research carried out in which Rituximab has been shown to treat EBV infection (in infected patients) (but this wasn't a study of ME patients), because the EBV was living in B-cells.
There has also been other research that suggests that EBV hiding in B-cells can reactivate HERVs (Human Endogenous Retroviruses), and that Rituximab kills the virus and reduces the level of reactivated HERVs.

 

[Jacque]

Yes ... that is all correct, from what Dr. Kogelnick has been telling me... You all hold tight cuz I emailed Dr. Kogelnick last night and asked him if he would be willing to do a live Q n A with all of you. He responded this morning and said he would be happy to do so but we might want to wait until after he does his interview with the founder of this site. So, I will let you know as soon as he tells me when that is! Meanwhile if all of you want to start writing down your questions I can accumulate them and send them to him in email..to make sure they are answered! Sound good?

Wow did I have an improvement today.. I sat up on the couch all day instead of laying down...How freekin pathethic is that??? No one will get it but all of you!!

 

[Kati]

Hey Kati...I was up for hours last night reading your blog... I so want to meet you... We sound so similar yet different. I do not have any GI issues I am CONSTIPATED...and don't have the terrible shortness of breath.. But so much of the other, mainly sore tailbone (my whole stinkin life) Take cushions to sit on everywhere and pads for motel beds etc.. so damn emberrasing. Have the severe weakness if stand too long and gravity pulling as you wrote. My calves are always swollen and thus I do not OWN a pair of shorts... I my legs are sooo ugly bc of this shit! POTS I too live my life on couch/bed... A good day is where I venture out to the couch and a really good day is when I go out to back yard and water my flowers and get mail... Good grief.. But I lay here and "hear" life goin on out there.... So sad!

All the best Jacque. We are all in the same boat. Just like in other auto- immune diseases we are also all different.

 

[Jacque]

Yep..and in defense of the doctors we wonder why they have such difficulty diagnosing WTH is wrong with us... No wonder all the doctors wander around blind as bats bumping into each other... there is no cut and dry clear symptoms with this MESS.. I was gonna send you a personal message but couldn't figure it out..duh

 

[Rooney]

Yes ... that is all correct, from what Dr. Kogelnick has been telling me... You all hold tight cuz I emailed Dr. Kogelnick last night and asked him if he would be willing to do a live Q n A with all of you. He responded this morning and said he would be happy to do so but we might want to wait until after he does his interview with the founder of this site. So, I will let you know as soon as he tells me when that is! Meanwhile if all of you want to start writing down your questions I can accumulate them and send them to him in email..to make sure they are answered! Sound good?

Wow did I have an improvement today.. I sat up on the couch all day instead of laying down...How freekin pathethic is that??? No one will get it but all of you!!

Jacque, Your posts are giving me such hope. Sitting up all day is quite an accomplishment. Many congrats. Keep em coming!

 

[Jacque]

HEY ALL.... Ya know I had a thought last night... Maybe the Rituxan seems to be well tolerated in ME patients because we feel like absolute DOO every day any how??? I read a long time ago that living with ME is the equivalent to what chemo therapy patients experience. Sooooo.... It is just more of the SAME OL for us.... Makes perfect sense to me! We are the toughest people on the PLANET!!! Fight on friends!!!

 

[Jacque]

Just saw this post. Hey did you see that Dr. K is setting up an interview with Cort on this site? Stay tuned... You should be able to get your scientific questions answered!
In response to your question. Reactions to be expected would be possible nausea, fever, headache, and increase in daily crap symptoms. I got some but they were minimal and just another day of crap..if you know what I'm sayin!! It was really not a big deal... I have no fear or anxiety about going for my future infusions. And lemme tell ya I was very fearful for the first one!

 

[Tia]

I'm just looking at all of this for the first time...

From wikipedia:

Rituximab has been shown to be an effective rheumatoid arthritis treatment...

...and there is some evidence for efficacy, but not necessarily safety, in a range of other autoimmune diseases.

Other autoimmune diseases that have been treated with rituximab include:

• autoimmune hemolytic anemia,
• pure red cell aplasia,
• idiopathic thrombocytopenic purpura (ITP),
• Evans syndrome,
• vasculitis (for example Wegener's Granulomatosis),
• bullous skin disorders,
• type 1 diabetes mellitus,
• Sjogren's syndrome, and
• Devic's disease, and
• Graves' disease ophthalmopathy.

...and rituximab is widely used off-label to treat difficult cases of multiple sclerosis, systemic lupus erythematosus and autoimmune anemias.

You're shittin' me?? I have that!

 

[Tia]

HEY ALL.... Ya know I had a thought last night... Maybe the Rituxan seems to be well tolerated in ME patients because we feel like absolute DOO every day any how??? I read a long time ago that living with ME is the equivalent to what chemo therapy patients experience. Sooooo.... It is just more of the SAME OL for us.... Makes perfect sense to me! We are the toughest people on the PLANET!!! Fight on friends!!!

Hell YEAH!

 

[alex3619]

HEY ALL.... Ya know I had a thought last night... Maybe the Rituxan seems to be well tolerated in ME patients because we feel like absolute DOO every day any how??? I read a long time ago that living with ME is the equivalent to what chemo therapy patients experience. Sooooo.... It is just more of the SAME OL for us.... Makes perfect sense to me! We are the toughest people on the PLANET!!! Fight on friends!!!

Hi Jacque, I have been thinking the same thing and I think I have read others have thought the same. It makes sense. On the other hand, its very B cell targeted. But that means that any place with B cells or other immune cells might be inflammed, hence the symptoms. Those places? Mostly gut and skin and lymph nodes.

Bye, Alex

 

[jimells]

Regarding the expense of rituximab, ... I remember looking at my bills and noticing that one of the drugs they used in treatment was very expensive ($3000 per dose), ...Perhaps progress would be quicker if we can find a cheaper drug to use.

determined's post underscores my confusion over this entire cost issue. How could R. be 'too expensive to use' when no one hesitates to prescribe $3000 per dose treatments for cancer? My uncle has severe COPD. When he had a heart attack, there was no hesistation (thank god for that!) to spend hundreds of thousands on surgeries, post-surgery therapies, and continuing treatment. And life-long AIDS drugs cost how much in the US?

So what is going on that 'our' illness doesn't deserve treatment, but these other 'popular' diseases do? Because there's no ME/CFS lobby in Washington handing out lots of large bribes?

 

[Kati]

determined's post underscores my confusion over this entire cost issue. How could R. be 'too expensive to use' when no one hesitates to prescribe $3000 per dose treatments for cancer? My uncle has severe COPD. When he had a heart attack, there was no hesistation (thank god for that!) to spend hundreds of thousands on surgeries, post-surgery therapies, and continuing treatment. And life-long AIDS drugs cost how much in the US?

So what is going on that 'our' illness doesn't deserve treatment, but these other 'popular' diseases do? Because there's no ME/CFS lobby in Washington handing out lots of large bribes?

Hi Jimells, nice Grey you got on your shoulder, I got a Grey too.

See, cancer and AIDS have first line of treatments, then that means it's an approved treatment for that disease. ME/CFS doesn't have one approved drug for our disease. Ampligen is still at clinical trial phase. Rituximab is not an approved drug for our disease, it's at the most, used off-label. I would think for the US, that insurance are not likely to cover off-label drug use (I may be wrong, I am not from the US) Here in Canada, my socialized health care plan will not cover for Rituximab for ME/CFS.

For those who cannot afford Rituximab but would like the opportunity, likely multi-centered clinical trials will be coming soon- Last I heard from Dr Kogelnik's radio interview- within a year. Then you get the drug for free.