New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

[Kati]

My cat had chemo and I gave her cytoxin (cyclophosphamide) in pill form. I had emergency ABX at home to give immediately if fever. I had to take temp daily. It had to be stored in fridge and handled w/ gloves. I had to give fluids to help flush it through kidneys/bladder.
Can it not be given in pill form to people too ? Takes away a lot of infusion costs.(although we are long way from this just curious)

The pill form is strongly linked with bladder cancer. Absolutely not recommended for humans.

 

[deleder2k]

I don't think pills will be an option. It is less effective, and has more side effects than IV.

 

[beaker]

The pill form is strongly linked with bladder cancer. Absolutely not recommended for humans.

Thanks for you info on that Kati

 

[BurnA]

I am not sure it matters what speciality the doctor is officially trained in. What matters is that they are familiar with the scope of the literature and have experience with patients. There are people with those skills around.

Where I live there are no ME/CFS consultants nevermind ones who may be familiar with the literature. I visited an immunologist today who had never heard of the Fluge Mella RTX story. He told me the only proven treatment was CBT and GET. I gave him the Fluge Mella papers to read.
I dont mind educating the doctors if i have to - i just think its an extra hassle PWME could do without!

 

[Kati]

Where I live there are no ME/CFS consultants nevermind ones who may be familiar with the literature. I visited an immunologist today who had never heard of the Fluge Mella RTX story. He told me the only proven treatment was CBT and GET. I gave him the Fluge Mella papers to read.
I dont mind educating the doctors if i have to - i just think its an extra hassle PWME could do without!

Where do you live, @BurnA ? Outside Norway not many have heard about the Fluge & Mella story.

As for educating the doctors, for the most part doctors dislike being educated by patients. At least it's my experience. Oftentime you can bring as many papers as you want, it's not going to change their bottom line.

 

[beaker]

Where do you live, @BurnA ? Outside Norway not many have heard about the Fluge & Mella story.

As for educating the doctors, for the most part doctors dislike being educated by patients. At least it's my experience. Oftentime you can bring as many papers as you want, it's not going to change their bottom line.

I think it depends on the dr. I think I am probably luckier than most, but you can find doctors receptive. It may take some looking.
Both my primary care and rheumy read what I send /bring them. Neither of them are MEcfs specialists.
When the CFIDS Journal or whatever it was called all those many years ago ( it is now defunct ) I bought him a subscription to it.
Both also have offered me papers they have come across. MY PCP gave me a copy of JAMA last visit that covered MEcfs. and the IOM report.

My rheumy especially (he does my ME coverage) has been willing to read and try most everything in the past 23yrs (!) I have been his patient. ( I had him before the PCP)
We have mutual respect for each other. I think that is the key.

It's important to talk first visit and ask them how familiar they are and if they are willing to read and learn and work as a team.
I stressed teamwork when first talking to these docs. And they were all for it.That means they respect my knowledge of my body and my illness and i respect their medical expertise and ability to analyze the information. And the relationships must be built. Hard to do these days w/ short appointments. :/

If you can get someone who will communicate via email it's very helpful. I have been very careful not to abuse that and overload. Just send links to papers when they come out.
I had had ME/CFS specialists prior.- first 5-6 years. So it was a bit of a change for me. But it's worked.

Others docs --Specialists here and there I see --I don't worry about so much. Depending on what they are treating/seeing me for, I offer info.Some are interested , some not. Most just see who my rheumy is and don't question what I tell them of Mecfs and my health. They may not "get it" but they accept it.
Have I babbled enough ? sorry.

TL;DR Try and find someone who will work with you and do the reading. They are out there. Just takes some looking.

Good luck !

 

[Kati]

I think it depends on the dr. I think I am probably luckier than most, but you can find doctors receptive. It may take some looking.
Both my primary care and rheumy read what I send /bring them. Neither of them are MEcfs specialists.
When the CFIDS Journal or whatever it was called all those many years ago ( it is now defunct ) I bought him a subscription to it.
Both also have offered me papers they have come across. MY PCP gave me a copy of JAMA last visit that covered MEcfs. and the IOM report.

My rheumy especially (he does my ME coverage) has been willing to read and try most everything in the past 23yrs (!) I have been his patient. ( I had him before the PCP)
We have mutual respect for each other. I think that is the key.

It's important to talk first visit and ask them how familiar they are and if they are willing to read and learn and work as a team.
I stressed teamwork when first talking to these docs. And they were all for it.That means they respect my knowledge of my body and my illness and i respect their medical expertise and ability to analyze the information. And the relationships must be built. Hard to do these days w/ short appointments. :/

If you can get someone who will communicate via email it's very helpful. I have been very careful not to abuse that and overload. Just send links to papers when they come out.
I had had ME/CFS specialists prior.- first 5-6 years. So it was a bit of a change for me. But it's worked.

Others docs --Specialists here and there I see --I don't worry about so much. Depending on what they are treating/seeing me for, I offer info.Some are interested , some not. Most just see who my rheumy is and don't question what I tell them of Mecfs and my health. They may not "get it" but they accept it.
Have I babbled enough ? sorry.

TL;DR Try and find someone who will work with you and do the reading. They are out there. Just takes some looking.

Good luck !

Ideally @beaker all physicians would be open minded, willing to read and learn and email. Glad you have found keepers along the way.

My experiences have been awful and even traumatic. It's just that locally the guidelines the docs follow still revolve around CBT and GET.

 

[beaker]

Ideally @beaker all physicians would be open minded, willing to read and learn and email. Glad you have found keepers along the way.

My experiences have been awful and even traumatic. It's just that locally the guidelines the docs follow still revolve around CBT and GET.

Do you think it's a country to country thing ?

Look I've run into some really truly awful doctors. But there is a lot of choice ( or at least there used to be or is if you can travel a bit and depending on your insurance. )

Just wondering if it's a matter of what Canadian ( or other country ) health med drs spewing out what the system tells them. Do they have a choice ? I worry this is the way we are headed. Although, I think the current insurance , etc.. is a mess. but that's another subject. But I guess connected.
If doctors lose their true opinion and say as a part of a health care program, then that's not good. If it's all pre formatted is there even a need for a doctor to dispense treatments/medicine ?

 

[Kati]

Do you think it's a country to country thing ?

Look I've run into some really truly awful doctors. But there is a lot of choice ( or at least there used to be or is if you can travel a bit and depending on your insurance. )

Just wondering if it's a matter of what Canadian ( or other country ) health med drs spewing out what the system tells them. Do they have a choice ? I worry this is the way we are headed. Although, I think the current insurance , etc.. is a mess. but that's another subject. But I guess connected.
If doctors lose their true opinion and say as a part of a health care program, then that's not good. If it's all pre formatted is there even a need for a doctor to dispense treatments/medicine ?

I think it is a lot of thing. i find that in Canada, with the structure of our health care system, the province decides what the protocols are for diseases. i am fairly comfortable with oncology because I was working in the field as an RN. The province funds protocols for patients. You have stage 2 ductal breast carcinoma in situ, your first chooce protocol, based on evidence is XYZ. These are provincial guidelines in my province and oncologists usually follow them because they work. however an individual patient may not be eligible to a certain protocol based on their preferences, or based on their health status (for instance cardiac problems) in this case the physician will deviate from the standards and in certain case they will have to ask the province or the country for approval of a different treatment.

In the case of ME we do not have this structure, but worse, the country and the province do not want to deal with it, do not want to fund something expensive, and do not even fund research. Doing all of that would cost them big time. So physicians are left to their own devices for their learning needs, and to manage the patients. Since there is no medical specialty attached to the disease, not even (and especially not rheumatologists) it means that family physicians are left to their own devices. We all know they have no time, and that they are usually not trained to prescribe anything stronger than Valtrex, that is if you actually have Herpes Simplex.

Moreover, Canada does not do viral titers on anybody except for patients with HIVand patients recovering from a bone marrow/stem cell transplant. It means you get either positve or negative on IgG and IgM titer.

Then when physicians are left to their own devices with a disease they don't know, they look up Cochrane reviews. Or the provincial guidelines. both of which leads to CBT and GET.

Vancouver actually hosted Simon Wessely in Vancouver in the late 1980's early 1990's. He told all of our doctors, young and old, that our disease was due to childhood abuse and false illness beliefs. dr Carruthers's ME clinic (main author for CCC and MEICC) in the 1990's got shut down because of that and dozens of patients committed suicide.

These doctors who attended Wessely's presentation are still practicing. Many of them are teaching at the university or showing the residents the 'trick of the trade' as you'd say.

Sorry for the long post.

 

[beaker]

I think it is a lot of thing. i find that in Canada, with the structure of our health care system, the province decides what the protocols are for diseases. i am fairly comfortable with oncology because I was working in the field as an RN. The province funds protocols for patients. You have stage 2 ductal breast carcinoma in situ, your first chooce protocol, based on evidence is XYZ. These are provincial guidelines in my province and oncologists usually follow them because they work. however an individual patient may not be eligible to a certain protocol based on their preferences, or based on their health status (for instance cardiac problems) in this case the physician will deviate from the standards and in certain case they will have to ask the province or the country for approval of a different treatment.

In the case of ME we do not have this structure, but worse, the country and the province do not want to deal with it, do not want to fund something expensive, and do not even fund research. Doing all of that would cost them big time. So physicians are left to their own devices for their learning needs, and to manage the patients. Since there is no medical specialty attached to the disease, not even (and especially not rheumatologists) it means that family physicians are left to their own devices. We all know they have no time, and that they are usually not trained to prescribe anything stronger than Valtrex, that is if you actually have Herpes Simplex.

Moreover, Canada does not do viral titers on anybody except for patients with HIVand patients recovering from a bone marrow/stem cell transplant. It means you get either positve or negative on IgG and IgM titer.

Then when physicians are left to their own devices with a disease they don't know, they look up Cochrane reviews. Or the provincial guidelines. both of which leads to CBT and GET.

Vancouver actually hosted Simon Wessely in Vancouver in the late 1980's early 1990's. He told all of our doctors, young and old, that our disease was due to childhood abuse and false illness beliefs. dr Carruthers's ME clinic (main author for CCC and MEICC) in the 1990's got shut down because of that and dozens of patients committed suicide.

These doctors who attended Wessely's presentation are still practicing. Many of them are teaching at the university or showing the residents the 'trick of the trade' as you'd say.

Sorry for the long post.

Thanks for taking the time to explain kati.
What a mess. I am both sad and mad at the same time. It's criminal and breaks my heart how patients are treated and left w/ nothing.
I hope the recent IOM report and other studies trickle over the border and change comes soon.
Best-

 

[wastwater]

I was wondering if there is another version of leukemia and found this to do with my genetics
http://scienceblog.cancerresearchuk...s-partner-in-crime-in-leukaemia-mystery-case/
and this
http://www.cancerresearchuk.org/abo...w-leukaemia-gene-stops-blood-cells-growing-up

 

[perrier]

If some has a moment, would he/ she please outline in brief the criteria for the type of patient who responded best in the Fluge/Melle research. Thanks.

And on another note, speaking of Canadian healthcare,in the province of Quebec it is illegal for a doctor to give Myers IV. Yes, believe it or not. It's not an " accepted" treatment.

 

[deleder2k]

If some has a moment, would he/ she please outline in brief the criteria for the type of patient who responded best in the Fluge/Melle research. Thanks.

And on another note, speaking of Canadian healthcare,in the province of Quebec it is illegal for a doctor to give Myers IV. Yes, believe it or not. It's not an " accepted" treatment.

I wouldn't waste my money on Myers cocktail...

 

[Scarecrow]

If some has a moment, would he/ she please outline in brief the criteria for the type of patient who responded best in the Fluge/Melle research. Thanks.

Sorry, but it's too early to tell - there have been too few patients treated to draw any conclusions. We'll need to wait until the Phase III trial ends (2017) and the results are known (probably well into 2018).

 

[perrier]

I wouldn't waste my money on Myers cocktail...

We found that really good IV s can often help with blood pressure. Always temporary relief.

Dr. Majid Ali who used IVs of all sorts in his clinic in New York was able to temporarily (for a day or two or three) reverse the most awful symptoms.

On the subject of Fluge Melle, do we not know in a general way what profile of patient responded most successfully.

 

[perrier]

I wouldn't waste my money on Myers cocktail...

Certainly not a permanent solution but here is a true story: when my daughter first became ill,she was totally bedridden. In Canada there was no help whatsoever. We eventually went to the USA where she was given mega vitamin IVs with hydrogen peroxide. After two weeks, she got out of her wheelchair.

This did not reverse the horror,but it meant she could get on her feet.

Later, another USA doctor was able to pull her out a relapse with megadose vitamin IVs. It didn't always work,but it did many times. And it worked quickly.

 

[beaker]

Certainly not a permanent solution but here is a true story: when my daughter first became ill,she was totally bedridden. In Canada there was no help whatsoever. We eventually went to the USA where she was given mega vitamin IVs with hydrogen peroxide. After two weeks, she got out of her wheelchair.

This did not reverse the horror,but it meant she could get on her feet.

Later, another USA doctor was able to pull her out a relapse with megadose vitamin IVs. It didn't always work,but it did many times. And it worked quickly.

I would guess that it's the IV fluids treating some type of OI that she has.
Cheney did an unofficial study back in the day. It didn't matter if someone got plain fluids or vitamins in fluids. Result was same. ( Only he didn't understand about OI then )
However, insurance companies won't pay for plain fluids, they will often pay for IV vits in fluids. So those are given.
Been there done that ;-)

 

[trails]

I apologize in advance if this question is sophomoric, though I am hoping someone can provide me an answer. Do the success of the Rituximab trials and all of the resultant CFS disease theories (autoimmune disease, etc.) completely negate or decrease the plausibility of the "older" mitochondrial theories postulated by Dr. Myhill and others?

 

[Snow Leopard]

On the subject of Fluge Melle, do we not know in a general way what profile of patient responded most successfully.

There is not yet enough evidence to predict which patient profiles are more likely to respond.

 

[bthompsonjr1993]

Repeated rituximab treatments is standard for those autoimmune diseases that do not switch off completely - like RA. Long term usage is not always possible because of falling immnoglobulin levels but for most patients it seems to be practical.
There are several newer monoclonal antibody drugs with clever handles on to increase efficacy. These are mostly in trials for lymphoma at present but there is every reason to think they will be relevant for autoimmunity. In general they are not licensed yet so not available for off label usage.

Hi professor Edwards. This is my very first post on Phoenix Rising, I have been sick for a little over year now avidly following this site for most of that time, and I just want to say I am beyond grateful for everything you do, you give people hope. Just so I can be clear on what you are saying though, in theory if I were to get rituximab and respnd positively but then relapse, I would be able to keep taking it whenever I have a relapse in the future? Also, would you say it realistic for me to think that Rituximab will be available in the US within the next ten years?