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Rituximab for severe ME. Should i try?

JES

Senior Member
Messages
1,320
Although rituximab enters the term bio-therapies, it remains as harmful to the immune system that given any chemotherapy for cancer. I warn that some of us in a variable time develop severe diseases: autoimmune or cancer. Medical information is available on the web

You are the second poster on this page saying that rituximab causes cancer. Would either of you provide any references to support this claim?
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I am an admin for a facebook group for patients taking ritx privately in Norway. No one is dying so far, and over 70 people have been getting infusions. The only thing I observe is that 30-40 % are experiencing a transient worsening of ME-symptoms, this was seen in the studies as well.

People read this forums, so do post claims with a little caution, as suggested before.
 

NL93

Senior Member
Messages
155
Location
The Netherlands
I am an admin for a facebook group for patients taking ritx privately in Norway. No one is dying so far, and over 70 people have been getting infusions. The only thing I observe is that 30-40 % are experiencing a transient worsening of ME-symptoms, this was seen in the studies as well.

30-40% seems like a lot :(
I am afraid chronic infections play a large role in people relapsing. "Classic" acute onset ME (as seen in outbreaks) was thought to be caused by an enterovirus. Wiping out B cells wouldn't do any good for that.
I do have this classic ME but also positieve ANA, which might suggest some auto immune process.. That's what i am hopelessly confused about. If i have a chronic infection, i might relapse, but if it is mainly auto immune rituximab might work .
Still unsure about it all
 
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morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
search and you shall find on the web , its not the first link on google ! of course !

doct @Jonathan Edwards , know all side effects on human with this treatment, it was used since many years on RA and all side effects are known

these are not studies by Roche or other lab compagny , which indicate these serious side effects after rituxan or all bio therapies ,
@Marky90 , its too recent for your norway friend to developted a serious side effect with rituxan,
its necessary to wait more 2 years to see new auto immune diseases( often steven johnson syndrom) or cancer! ,

for us its too late , no benefits and all risk of this therapy
If I could know the future I would never have taken this rituxan

i'm sure FDA or EMEA will not give agreement for this disease
the risk / benefit ratio is unfavorable
 

Kati

Patient in training
Messages
5,497
Hi @NL93
when someone decides to get a particular treatment that has very little information in terms of benefits and risk for our disease population, then one decides on whether the risks are acceptable for them.

1) What are the acceptable risks, one wonders. What would happen to you if you had a horrible relapse, or if you were even sicker than what you are now? Would you get support from your family and friends? Would you be able to access food and care for yourself? Are you ready to accept these risks? Do you have a knowledgeable physician willing to support you regardless?

2) are you ready to accept unforeseen complications that could occur?

What is important when making the decision is to listen to what YOU think is right and whether the risks are acceptable for you. It is also important to be well educated about the medication and whether your current drug regimen increases your risk of complication (for instance, taking corticosteroids increases your risks of a deadly brain virus).

3) financial issue, who pays -sometimes it matters in making a decision.

In the end, no one can make this decision but you. If you are not 100%sure, feel free to defer the decision by a few months to think about it further. Consider that in a couple of months time there will be a new Invest in ME conference, where further info may be provided and there is also the incoming IACFSME conference in the fall where further info may be provided. Waiting few months further leads us in 2017 and with luck we may have new publications.

Best of luck.
 

morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
Hi @NL93
when someone decides to get a particular treatment that has very little information in terms of benefits and risk for our disease population, then one decides on whether the risks are acceptable for them.

1) What are the acceptable risks, one wonders. What would happen to you if you had a horrible relapse, or if you were even sicker than what you are now? Would you get support from your family and friends? Would you be able to access food and care for yourself? Are you ready to accept these risks? Do you have a knowledgeable physician willing to support you regardless?

2) are you ready to accept unforeseen complications that could occur?

What is important when making the decision is to listen to what YOU think is right and whether the risks are acceptable for you. It is also important to be well educated about the medication and whether your current drug regimen increases your risk of complication (for instance, taking corticosteroids increases your risks of a deadly brain virus).

3) financial issue, who pays -sometimes it matters in making a decision.

In the end, no one can make this decision but you. If you are not 100%sure, feel free to defer the decision by a few months to think about it further. Consider that in a couple of months time there will be a new Invest in ME conference, where further info may be provided and there is also the incoming IACFSME conference in the fall where further info may be provided. Waiting few months further leads us in 2017 and with luck we may have new publications.

Best of luck.

I agree with what you write Kati D,
it is too early to rush on this hypothetical therapy that works too badly on severe forms.
I know something, already very reached
100% of WGI are severe,
so now it has become hell for me
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
@morse27, I have already read extensively about side effects, as I am taking rtx myself soon. I did not find any evidence for even a small probability of severe side effects. If you think that is the case, why don`t you link to a proper article, and not something in french, which i dont`t understand.

SJS is incredibly rare, and not something that "often" occurs at around 2 years after rtx-treatment..
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
30-40% seems like a lot :(
I am afraid chronic infections play a large role in people relapsing. "Classic" acute onset ME (as seen in outbreaks) was thought to be caused by an enterovirus. Wiping out B cells wouldn't do any good for that.
I do have this classic ME but also positieve ANA, which might suggest some auto immune process.. That's what i am hopelessly confused about. If i have a chronic infection, i might relapse, but if it is mainly auto immune rituximab might work .
Still unsure about it all

Well they are relapsing in various degrees, and its only an estimate based on a poll we have going.

Institute of medicine concluded that there is not sufficient evidence that viruses, bacteria and fungus, maintans this disease, not even in subsets. All we know is that EBV triggers ME in a lot of cases, but that`s it.
 

Kati

Patient in training
Messages
5,497
Well they are relapsing in various degrees, and its only an estimate based on a poll we have going.

Institute of medicine concluded that there is not sufficient evidence that viruses, bacteria and fungus, maintans this disease, not even in subsets. All we know is that EBV triggers ME in a lot of cases, but that`s it.
This is a contentious topic because i remember Dr Fletcher raising the point of immune dysfunction and how the IOM report was wrong in that regard. She mentioned that at the past CFSAC and she wanted it ammended. It makes one wonder, you know, because the IOM report did not pick ALL of the evidence. Some of the papers were left behind. And I believe their cut off time was ?? 2014 ? (Not sure on that one and surprisingly the IOM link to the full report is not available)

I would be curious to see what drs Klimas, Peterson and Montoya think about that, because I suspect all 3 still perform immune and viral testing.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
This is a contentious topic because i remember Dr Fletcher raising the point of immune dysfunction and how the IOM report was wrong in that regard. She mentioned that at the past CFSAC and she wanted it ammended. It makes one wonder, you know, because the IOM report did not pick ALL of the evidence. Some of the papers were left behind. And I believe their cut off time was ?? 2014 ? (Not sure on that one and surprisingly the IOM link to the full report is not available)

I would be curious to see what drs Klimas, Peterson and Montoya think about that, because I suspect all 3 still perform immune and viral testing.

Hmm with regards to what exactly?
IOM concluded that there are lots of abnormalities in the immune system.
The cutoff was indeed in 2014, may 30^th to be exact. However they still reviewed som papers after that, which were sent to them.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
search and you shall find on the web , its not the first link on google ! of course !

doct @Jonathan Edwards , know all side effects on human with this treatment, it was used since many years on RA and all side effects are known

In case you had not noticed @morse27 the first use of rituximab in RA many years ago was by me - look at the New England Journal of Medicine 2004, J Edwards et al.
 

jaybee00

Senior Member
Messages
592
Marky--

For the 30-40% that experience transient worsening, how long does this last, when does it start (e.g. starts one month after first infusion, etc.), and how bad does it get as far the worsening is concerned?

Thank you.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Marky--

For the 30-40% that experience transient worsening, how long does this last, when does it start (e.g. starts one month after first infusion, etc.), and how bad does it get as far the worsening is concerned?

Thank you.

Usually soon after the first infusions. For the majority it lasts a couple of weeks, for some - a couple of months. The severity of it varies, but no one has become completely bedridden or anything like that if they weren`t before. In one year I can report more accurately.
 

deleder2k

Senior Member
Messages
1,129
I must add that many of the patients that responded in the poll are very sick, and it looks like the majority of them are travelling far to receive the treatment which is in a clinic in Western Norway. For a moderate ME sufferer just the travel itself could lead to deterioration that could last for weeks.

In the 2011 study from Haukeland 13% of those who received Rituximab said that they experienced a "slight CFS worsening the first two months". In the placebo group 13% reported the same. We must acknowledge the fact that travelling, stress, blood tests, and an infusion that lasts many hours will make a lot of us feel worse for quite some time.

Fluge and Mella do believe that some are experiencing transient worsening, but it does not appear to be a major issue.

There have not been any serious side effects due to Rituximab at Haukeland University Hospital. I find it odd that many here have certain beliefs about this drug. It is not chemotherapy, it is a monoclonal antibody. We do not know the safety profile for ME yet, but we have no reason to say that it can cause cancer.

For the sake of the discussion I think we should acknowledge what information we have at this time, including published studies and statements from someone who actually has clinical first hand experience (which we are so lucky to possess here).

@NL93, I am in no position to reccommend you to do anything. We don't know enough about RTX for ME yet, but I think you should make a decision based on published studies, and on the experience from Haukeland University Hospital (and perhaps Kogelnik). Patients who say that their ME occured after classic EBV onset, viral infections, throat infection, pneunomia, GI infection, and borrelia were included in the study published in 2015 (Fluge et al). No serious side effects have been registered.