Rituximab for severe ME. Should i try?

[Justin30]

You`re in a difficult situation.

My personal opinion is that you take what you just quoted with a big grain of salt.

There`s no "secret info", OMI has not done any clinical trial on rtx for ME. They have been treating a lot of patients, and if we are to believe them, they are seeing the same response rates as have been seen in Norway.

Fluge & Mella have indicated that the severely ill might have less chances of major responses, but there is potential hope in the trial they are undertaking on the chemo cyclophosphamide. Immunoglobulins might also be something to try. I have seen several severly ill patients return to a state with decent quality of life after interventions, and a famous former severely ill me-patient in Norway, even got completely healthy by rtx.

However, personally.. I think I would wait a bit if possible, if I were severely ill. Even though lasting relapses due to rtx seem to be very rare, I think i would have gone for cyclo or a future combination of rtx and cyclo.

With regards to Whitney, we just don`t know. Maybe rtx made him worse directly, indirectly, or because of something else completely. It`s not right to speculate on his behalf.

Wish you the best in your decisions

Based on what I saw it seemed that several of what you would consider severe were helped by Rituximab.

I agree with many of your points it is too soon to tell and people should wait until at least they can run some tests that indicate Rituximab has a good chance.

Further I want to make that many top physicians have pointed out and that is that their are likely subsets to this disease. As in it is likely not one disease.

Further there is always a chance for misdiagnoses both good and bad. There are many rare diseases and Drs do not have all the answers.

IVIG has shown efficacy in 3 of 5 small studies and has benefited some that are severely ill.

They used IVIG in Poliomylietis which can look a lot like ME. They even use to call ME post polio syndrome.

Their are many new Autoantibodies showing up in ME now as well.

But as stated it would be best to wait to see where the dice fall.

Some drugs can make people worse off.

 

[perrier]

You`re in a difficult situation.

My personal opinion is that you take what you just quoted with a big grain of salt.

There`s no "secret info", OMI has not done any clinical trial on rtx for ME. They have been treating a lot of patients, and if we are to believe them, they are seeing the same response rates as have been seen in Norway.

Fluge & Mella have indicated that the severely ill might have less chances of major responses, but there is potential hope in the trial they are undertaking on the chemo cyclophosphamide. Immunoglobulins might also be something to try. I have seen several severly ill patients return to a state with decent quality of life after interventions, and a famous former severely ill me-patient in Norway, even got completely healthy by rtx.

However, personally.. I think I would wait a bit if possible, if I were severely ill. Even though lasting relapses due to rtx seem to be very rare, I think i would have gone for cyclo or a future combination of rtx and cyclo.

With regards to Whitney, we just don`t know. Maybe rtx made him worse directly, indirectly, or because of something else completely. It`s not right to speculate on his behalf.

Wish you the best in your decisions

Please do not think I'm speculating on Whitney. I have nothing but compassion for him, as he is suffering just as is my daughter. I raise his name because he has access to the best due to his dad, and we do not.,so, watching his situation helps us make decisions as it were.

I don't know where yo turn anymore. We have seen de Meirleir, Harris, Klinghardt, Teitelbaum, cowden specialists, naturopaths, othe CFS doctors. We just have cabinets of supplements, alas.

I really need to go somewhere where the doctor will be caring realizing how severe this condition is. And someone knowledgeable..

 

[perrier]

I am a patient at OMI and can say they are the best. Each patient make a decision for themselves as of whether they want one treatment or not and whether the risk is acceptable to them. Each patient signs an informed consent. The consent mentions various risks of the drug.

i have no regret to have tried, and I would do it (Rituxan) again tomorrow (or yesterday even). I cannot wait until Cyclo is being offered because I would be one of the first to have it injected. i am a chemo nurse, I know the risks and to me it is worth trying because this illness is becoming increasingly unbearable.

Yes Kati, the illness is increasingly unbearable. And I need to act soon because I fear my daughter will just not hang on. And I find it hard because she's so reactive and this frustrates physicians.

 

[perrier]

I seem to recall, Dr Edwards indicated that RTX should be administered by knowledgeable doctors, preferably with hospital access.

What I find sickening is a method I see and we have practiced too often: the patients makes a long trip to the office or clinic of a doctor, gets a bunch of supplements, has some IVs and then shuffles home. And then bang...all sorts of reactions and problems ensue.

So after this happen a few times we parked beside the doctor, but that didn't help either because the treatments didn't help.

Is there anywhere a doctor knowledgeable in this nightmare willing to take care of these patients in a real way?

 

[Marky90]

Please do not think I'm speculating on Whitney. I have nothing but compassion for him, as he is suffering just as is my daughter. I raise his name because he has access to the best due to his dad, and we do not.,so, watching his situation helps us make decisions as it were.

I don't know where yo turn anymore. We have seen de Meirleir, Harris, Klinghardt, Teitelbaum, cowden specialists, naturopaths, othe CFS doctors. We just have cabinets of supplements, alas.

I really need to go somewhere where the doctor will be caring realizing how severe this condition is. And someone knowledgeable..

Sorry Perrier I was not referring to you!
I would go to OMI in your situtation. There`s no point spending money on doctors who don`t treat with a scientific foundation, in my opinion. At OMI they have loads of experience with severe patients, and they follow all the new exiting research closely.

 

[Justin30]

Please do not think I'm speculating on Whitney. I have nothing but compassion for him, as he is suffering just as is my daughter. I raise his name because he has access to the best due to his dad, and we do not.,so, watching his situation helps us make decisions as it were.

I don't know where yo turn anymore. We have seen de Meirleir, Harris, Klinghardt, Teitelbaum, cowden specialists, naturopaths, othe CFS doctors. We just have cabinets of supplements, alas.

I really need to go somewhere where the doctor will be caring realizing how severe this condition is. And someone knowledgeable..

Other than Lyme and CFS Drs have you tried researching rarer diseases that are possibly not CFS?

Like Rheumetologists, Neurologists, and immunologists that are highly specialized?

Had she had a SPECT or PET done on her brain and spinal cord? Have you seen Dr Byron Hyde?

I dont know if you have seen Dr Petterson but he requires a thorough workup prior to making a decision whether or not he will see a patient.

 

[jaybee00]

Any other ideas why there is such a big discrepancy in response between F&M's data and the (anecdotal) data reported here by Mariah?

Thanks

 

[Marky90]

Any other ideas why there is such a big discrepancy in response between F&M's data and the (anecdotal) data reported here by Mariah?

Thanks

Because anecdotal data is simply that, you can`t draw conclusions from it.

 

[Mariah]

@jaybee00 One possible explanation is that newer studies, like the ones being carried out right now, will have worse results than 2/3s responding. Keep in mind that the initial studies are very small, and the second one was both small and open. Just as one cannot draw conclusions from anecdotes, one cannot draw conclusions from small studies. There are a multitude of things that can explain positive results in small studies that has nothing to do with the drug itself, which is precisely why larger studies must be done before we can say anything about the efficacy of this drug . In addition, people seeking private treatment are often a more heterogenous group with both other and additional problems than the carefully selected patients of studies. There could be other variables affecting the outcome here. I could also just have happened upon a cluster of negative responders, who knows. We will just have to wait and see unfortunately. Nothing can be inferred yet. Not that the drug works, and not that it does not work.