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

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Can you elaborate on the adverse events ?
I know hypogammaglobulenaemia has been discussed before but are there other serious side effects that we need to know about ?
Is there any way to reduce the likelihood or is it purely down to individual patients response and subsequent management ?
Thanks.

@BurnA IVIG might be helpful, although I think there are questions about using RTX and IVIG concurrently.
(I use both)
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Is this stretching things a bit ? if not how is the phase II double blind test explained ? I know numbers were small but my understanding is that while we may not know exact response rate, we did learn that rtx is effective .

The phase II trial showed no significant effect in terms of its primary endpoint. It was only a post-hoc analysis at six months that showed an interesting difference (you cannot have a statistically significant difference post hoc). It all comes down to looking at the patterns in the data and trying to decide if they look like a real effect. My own impression is that they could well be a real effect but I am not certain and nor are the researchers involved.

I think this may be worth repeating: we do not yet know that rituximab is effective. Certainly Drs Fluge and Mella would not want us to assume that.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Can you elaborate on the adverse events ?
I know hypogammaglobulenaemia has been discussed before but are there other serious side effects that we need to know about ?
Is there any way to reduce the likelihood or is it purely down to individual patients response and subsequent management ?
Thanks.

Reducing the likelihood of adverse effects is chiefly a matter of having an intelligent experienced physician giving the treatment. There are all sorts of potential problems that are in the literature. What has not got into the literature and I think should have is that the most serious relatively common adverse effect is a pneumonitis. In most cases this passes without problems, but for people with serious pre-existing lung disease it may not.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
We know CDC and NHS are not going to promote new ideas and treatments, and neither are the drug or insurance companies, so that only leaves patients and doctors. I'd like to see an effort to send knowledgeable folks to a rheumatologist conference or two. Doctor-to-doctor education in informal settings could spread the word without upsetting the bureaucrats.

I know we are told everyday, over and over that Twitter and Facebook and Google and Skype are going to save the world, but they can't beat in-person discussions, so personally I am not interested in Twitter campaigns and signing computer petitions.

It seems to me that we should be able to raise enough money right here on our forum to send someone to a conference. Please forgive my presumptuousness @Jonathan Edwards but I can't help thinking you would be a fine spokesman for us and probably a very entertaining speaker to boot! I'm sure there are other folks who would be equally effective - anybody who is willing, we should try to fund them.

What I think are needed are small conferences that draw in people who are interested in ME or might be persuaded to be interested. The IiME conferences and workshops are the ideal model and they are doing just this. Other organisations are doing similar things. In the UK MEA is very proactive about meetings too. One to one or three to three talking is going on and very effectively. I am quite optimistic about that side of things.
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
@ghosalb yes my doctors got a prior approval for RTX. I have no idea how they coded it or what they wrote. I had at the time of my RTX treatments Blue Cross, through pers choice. My Stanford team for some reason has the best luck with getting me certain treatments and blood work.

Like for instance, I have to have my B-cells checked every 3 months, my local doctor can't figure out how to code that, several things have been tried but for what ever reason they can't get my insurance to pay for that blood test. They have even used the same code at Stanford- doesn't fly.

So I have go all the way to Stanford for that one blood test. Now this trip is 5 sometimes 6 hours to get there and 7 hours to get home. I am half dead from that trip. But it's worth it to get the B-cells checked.

Now my insurance is switching to Medicare as primary ( hubby retired) I am not sure if Medicare is going to pay for things like RTX and B-cells checks. Kinda nervous about this. I think teaching universities have much better luck in getting these things ordered.

@BurnA, I wonder the same thing, what is it going to take to treat ME/CFS with RTX. They sure don't let the people with RA suffer with joint pain, they throw these types of drugs ( and lots of new ones ) at them all the time.

@jimells, you are spot on, it's all about the codes. As I said above the teaching universities have very good luck with this. It's almost like they get a free pass, (which actually I believe they do)

( I see you're from Maine, I am too~ Orono)

I have no idea if anything about my case will be in journal !
It will be nice to know those codes if possible.....and feed it to other doctors. Other options I am thinking about is appeal to Genentech for free (for those not responding) and pay a reduced price and/or pay on installment over say 10 years for those who respond. This is a reasonable request I would assume.
 
Messages
2,087
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.

I am confused when I read this. I mean if RTX is prescribed for RA and my feeling is I would swap ME/CFS for RA any day, then why would there be difficulty weighing up risks and benefits ? I understand it is not a drug to take lightly but when faced with ME/CFS I can't imagine not taking RTX to be honest. ( obviously in the right hands )

Would you expect additional safety concerns to be identified from its use in ME/CFS or would they be the same as RA ?
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I am confused when I read this. I mean if RTX is prescribed for RA and my feeling is I would swap ME/CFS for RA any day, then why would there be difficulty weighing up risks and benefits ? I understand it is not a drug to take lightly but when faced with ME/CFS I can't imagine not taking RTX to be honest. ( obviously in the right hands )

Would you expect additional safety concerns to be identified from its use in ME/CFS or would they be the same as RA ?

Imagine the risks/benefits would be same.
I get pretty severe facial edema also...
Its been used for acquired angioedema sucessfully in severe cases. My immunologist has never mentioned its name at all. If i had throat swelling episodes prehaps things would have been different.
Its a big decision indeed to make.....
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@BurnA , I too am a bit confused. My sister has RA and I have watched her RA doctor put her on 5-6 different very big gun RA drugs over the years. ( if you read the side effects of these drugs you wouldn't believe it)

Her autoimmune system isn't great either, her doctor doesn't do any special tests, heck he doesn't even see her but once year and that is for insurance reasons. She calls him and says the RA drug isn't working and he puts her on a new one, no blood work, no heart check...nothing. I believe he tells her to get AST/ALT tests done in the beginning but that is it.

She takes these drugs because the pain is too much, she knows her health is compromised by these drugs but she doesn't want to live life in bed and on heavy opiates.

I also see a RA doctor at Stanford and he put me on Methatrexate which also has risks, but sometimes you have to decide if you want a shorter life without pain and fatigue or do you want a life stuck in bed.

I read this on line a long time ago " since certain therapies may provide benefit to otherwise refractory patients, it is an ethical obligation to search and evaluate potential therapeutic options for patients in urgent need."

I thanked my doctor for having the moral courage to offer me RTX !

Wanted to add that I say my doctor had the moral courage to offer RTX to me because he did so with very little clinical evidence on what is wrong with me, Discoid lupus is 100% supported by biopsies. The APECED I found out last month is not 100% I only have 1 gene for that. ( however he is certain that I have this - research says otherwise) Candidis is 100% based on mouth/nasal swabs. Ehlers Danlos is 100%. At the time of offering me the RTX he did not know about the autonomic and GI issues.
 
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gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I am confused when I read this. I mean if RTX is prescribed for RA and my feeling is I would swap ME/CFS for RA any day, then why would there be difficulty weighing up risks and benefits ? I understand it is not a drug to take lightly but when faced with ME/CFS I can't imagine not taking RTX to be honest. ( obviously in the right hands )

Would you expect additional safety concerns to be identified from its use in ME/CFS or would they be the same as RA ?

I would imagine its offered for RA in severe cases where quality of life is highly compromised and pain is to the point of unbearable.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I am confused when I read this. I mean if RTX is prescribed for RA and my feeling is I would swap ME/CFS for RA any day, then why would there be difficulty weighing up risks and benefits ? I understand it is not a drug to take lightly but when faced with ME/CFS I can't imagine not taking RTX to be honest. ( obviously in the right hands )

Would you expect additional safety concerns to be identified from its use in ME/CFS or would they be the same as RA ?

I was referring to weighing up risks and benefits in treating ME. Since we do not actually know if rituximab has any benefits in ME I cannot see how we can weigh things up. We are hoping that it has benefits and there are indications that it does from the phase II study and individuals' experiences, but it is quite possible that it will turn out that these are based on lucky coincidences and that there is no effect. Moreover, my remark was as much as anything directed at the idea that patients might be able to judge the added risk of going to private practitioners who do not know much about using rituximab long term. That would be extremely hard to work out.

For RA physicians prescribe rituximab because it has a license. Just like people buy Mercedes cars because they are for sale. In general they do not get involved in weighing up the risks and benefits - they rely on drug company based papers in the literature - which is probably unwise. Having gathered the data myself and talked to other people involved in development I think I probably do have an idea how to weigh risks and benefits in RA but it is not straightforward. I am pretty sure that it is very worthwhile, having seen the details of the data. The situation in ME is quite different. We do not yet have a trial that showed significant difference on a primary outcome measure and even when we do the outcome measures are much more difficult to interpret in ME than in RA.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@ Jonathan Edwards ~ Thank you for writing that in 'lay terms'. Agree with above post and enjoyed hearing this... "they rely on drug company based papers in the literature - which is probably unwise."

So fortunate to have you Dr. Edwards here at PR to keep us warriors in check. The natives are getting restless!
 

Thomas

Senior Member
Messages
325
Location
Canada
I've read through 5 pages of this post and have one question: Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?

I of course love to read of the success stories and they make me feel so happy for the people who have been put into remission. However I also heard of a few folks who got so worse on the treatment that they are completely bedridden and unable to speak or eat.

So I ask again, are the Drs at Stanford basing their use of the drug on anything other than pure chance?
 

Gingergrrl

Senior Member
Messages
16,171
Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?

@Thomas Kaufman and Kogelnik are at OMI in Mountain View (not at Stanford) and are in no way connected to where Rebecca received her RTX treatment. Kogelnik trained with Montoya at Stanford before he founded OMI but they are now totally separate entities. As to the second part of your question, even though I am an OMI patient, I do not know the answer as to who is considered a good candidate or responder.
 

Thomas

Senior Member
Messages
325
Location
Canada
@Thomas Kaufman and Kogelnik are at OMI in Mountain View (not at Stanford) and are in no way connected to where Rebecca received her RTX treatment. Kogelnik trained with Montoya at Stanford before he founded OMI but they are now totally separate entities. As to the second part of your question, even though I am an OMI patient, I do not know the answer as to who is considered a good candidate or responder.
Oh my bad sorry -- Canadian boy here. So Stanford is just Montoya's department and they do not do RTX? Also, as an OMI patient the doctors there haven't mentioned RTX as a possible treatment for you? Perhaps patients have to request it.
 

Gingergrrl

Senior Member
Messages
16,171
Oh my bad sorry -- Canadian boy here. So Stanford is just Montoya's department and they do not do RTX? Also, as an OMI patient the doctors there haven't mentioned RTX as a possible treatment for you? Perhaps patients have to request it.

No worries and I know all the acronyms are confusing! Stanford has many different depts and several hospitals and clinics. Rebecca's doc who gave the RTX was not Montoya but she met him in another context (Rebecca, please correct me if I am wrong.)

I have discussed RTX with Dr. K at OMI but at present, it is not something that I am going to pursue. We do not think I could tolerate it due to MCAS/potential allergic reaction in addition to the amount of IV fluid that it would require. I had a very dangerous and abnormal reaction to IV saline & magnesium (not at OMI) and even though we now think we know why, I cannot risk it at this point in my health and am pursuing some other options. I also cannot afford RTX so it is off the table financially. Lastly, I live about 7 hrs south of OMI so it would be quite difficult logistically with my family responsibilities (but that is the least reason and could be worked out if not for the other factors.)

ETA: Truthfully, I do not think they know yet who is going to be a responder. I am highly IgM positive for 2+ years for EBV virus which put me in the group that they would consider giving it to but I really do not know much more beyond that. Others may be able to provide more info.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
I've read through 5 pages of this post and have one question: Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?

I of course love to read of the success stories and they make me feel so happy for the people who have been put into remission. However I also heard of a few folks who got so worse on the treatment that they are completely bedridden and unable to speak or eat.

So I ask again, are the Drs at Stanford basing their use of the drug on anything other than pure chance?


Hello, @Thomas, My Stanford team is not part of any CFS research/studies, I don't even know if they know I have CFS. (When I first went to Standford I filled out a health history with CFS/ Cat Scratch Fever all the way at the bottom of page 2, I have never had any words with any of my doctors about CFS, it is a moot point based on my health issues for the last 5 years)

I was dying, my whole body was in attack mode and shutting down. (On a feeding tube) Doctors felt RTX was a last resort with strong possibilities of helping me. My lead doctor is an immune specialist who has been working on my case for 6 years.

Did they have what is wrong with me completely dialed in, NO. Did the doctors have a clear understanding about T-Cells /B-Cells and zillions of other immune problems you bet ! I was on so many drugs with so so many serious side effects, completely unsustainable.

Rituxan was a way to cut down on all the meds that were so toxic, much more toxic than Rituxan. Rituxan was thought to be a way to stop the damage my body was doing to itself. It was thought I might have some relief from my debilitating pain.

My doctors saw undeniable suffering and tried many things before Rituxan, but in the end they sought to only
save me, get me comfortable and maybe just maybe give me some quality to my life. This to me was truly practicing medicine !

Instead of treating me as a one size fits all I was treated based on my situation. I feel lucky to have been given such customized care. Which I believe is how all medicine should be practiced.

I have never heard of RTX being used based on pure chance, hopefully this will never be the case. Hopefully doctors will treat each patient based on their circumstances.
 
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Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?
They aren't at Stanford, they are at the Open Medicine Institute. Also, they are not just trying Ritux on random patients but I don't know what criteria they are using. Some of their patients are in other threads and might be able to tell you more.
 

Hip

Senior Member
Messages
17,824
Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?

I would hope that Kaufman and Kogelnik at the OMI may be trying to help characterize which patients respond to rituximab and which don't; but as far as I am aware, I don't think any such characterizations yet exist.

Has anyone seen any statements or statistics that these guys have made regarding their rituximab treatments? Info on the number of patients they have treated, success rates, and so forth?



However I also heard of a few folks who got so worse on the treatment that they are completely bedridden and unable to speak or eat.

Are there any online forum accounts of people getting worse on rituximab?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I've read through 5 pages of this post and have one question: Are Kaufman and Kogelnik at Stanford just throwing things up in the air by using RTX for ME on random patients and hoping for a good response, or are they actually basing their decision on who to use it on and/or who might be a likely responder to this treatment?

I of course love to read of the success stories and they make me feel so happy for the people who have been put into remission. However I also heard of a few folks who got so worse on the treatment that they are completely bedridden and unable to speak or eat.

So I ask again, are the Drs at Stanford basing their use of the drug on anything other than pure chance?

That's an interesting thing to ask. It illustrates the conflict between research and individual treatment.

If the doctors at OMI are hoping to help PWME in general by studying the benefit of rituximab in ME then they should be doing just that - treating people at random - because that is what the Norwegians are doing in their randomised trial. To get a representative group of ME patients you either have to treat at random or in strict sequence of fulfilling criteria - you certainly do not pick and choose as you think fit.

On the other hand if the doctors at OMI are trying to help individuals in need then they should go about it like Rebecca2z's doctors - weighing up what indications they have in the specific case.

But the catch22 for PWME as a whole is that any patient for whom there are special reasons for using rituximab is probably not typical of PWME (since ME is not known to be associated with any particular clinical features or lab results that would favour using rituximab) and may not in fact have ME or CFS is a useful sense of the word. As I understand it the presence of other features that might explain severe fatigue more or less excludes the diagnosis.

In relation to people getting worse: Dr Fluge and Dr Mella have had some patients who deteriorated initially but I do not think in the long term. The only case known through the internet (as far as I know) who seems to have got worse and stayed worse is the football player treated in Germany.