Experience with Rituximab

[Gingergrrl]

So: what do you consider to be your diagnosis:? If you care to share..... I'm glad to find this discussion as I was curious regarding your positive experience @Gingergrrl, while the study came back: Rituximab didn't help.

I am happy to share and wish that I had my entire story in one cohesive place but don't . At this moment in time, my two main treating doctors (who I have worked with since mid-2014 and mid-2015) feel that my diagnoses are Hashimoto's Disease, Autoimmune POTS, Mast Cell Activation Syndrome (MCAS), and an atypical form of LEMS (Lambert-Eaton Myasthenic Syndrome).

It is atypical b/c I am not positive for the P/Q type calcium channel autoantibody (only the N-type), my muscle weakness was predominantly upper body vs. lower body, and my lungs and diaphragm were affected much more severely than most LEMS patients. I was also odd in that many with LEMS do great with Mestinon but I did not tolerate it at all and it gave me respiratory depression!

Every group debates these type of issues, re: who "truly" has the illness, (not just the CFS community!) and many people feel that only having the N-type calcium channel autoantibody is 100% diagnostic (without the P/Q type) if you meet the symptom criteria but others feel that you must have the P/Q type. There are also paraneoplastic (cancer) type of LEMS and Autoimmune (non-cancer) type of LEMS.

My main doctor feels very confident (since I have had three negative lung cat scans) that I have the autoimmune type and no longer have to worry about it becoming cancerous. He feels that I have an overall diagnosis of "Autoimmune Dysautonomia" that is much more encompassing than just "Autoimmune POTS". This term is given different labels by different doctors & websites (like "Autoimmune Autonomic Neuropathy", etc) but it is basically the same thing meaning that autoantibodies (created by B cells) are causing all sorts of autonomic problems.

In my case, I also have other autoantibodies (anti GAD65, anti-muscarinic/cholinergic and anti-alpha & beta adrenergic autoantibodies, etc) that can relate to different illnesses and make it all more confusing. Autoimmune Dysautonomia is an emerging specialty in it's very early stages (and two of the doctors who are very prominent in it, but I have never seen them, are Dr. Steven Vernino and Dr. Jill Schofield).

CFS just seems to remain the easy catchall term that isn't conveying much of whats actually going on.

I agree with you that this is the case in the US and cannot speak to what is going on in other countries. But in the US, the term "ME" is not used and if you go to a doctor with vague symptoms (and they do not try to blame it on depression) then you are usually given a "CFS" diagnosis whether that ultimately turns out to be the correct diagnosis or not.

so: it can take quite a while to correct these things.

Definitely and it takes many months to know if you are a responder to Rituximab b/c it has to kill the B cells and you also have to wait for existing (fully grown) autoantibodies to die. Rituximab does not do anything to existing autoantibodies like IVIG does.

sorry to bother the thread.

You are not bothering the thread at all and if anything, I am am bothering the thread b/c Rachel just wanted to know how to contact Dr. Fluge! I apologize @redrachel76 for taking this off-track .

In this case, we know from F&M's 2015 paper that major responses to rituximab began to manifest at the 23 week stage on average (range 8-66 weeks).

So that means that there can be responders in as early as 5-6 months (if I am understanding correctly)?

 

[Hip]

So that means that there can be responders in as early as 5-6 months (if I am understanding correctly)?

F&M are talking about the first signs of improvement here (not the maximum level of improvement achieved by the patient later down the line), and they say on average these first signs come at 23 weeks (5 months),

That's the average, but the range is 8 to 66 weeks. That is to say, in some rituximab patients the first signs of improvement come as early as 8 weeks (2 months), or as late as 66 weeks (15 months).

As for when the full benefits arrive, I am not sure if F&M state that. But if the first signs can come as late as 15 months, one could imagine that in some cases it might be up to 2 years before the full benefits arrive.

Rituximab led to me being able to walk without a wheelchair, and regain normal muscle strength and breathing, after almost four years (which I never thought would happen again in my lifetime). I have encountered many people who have had drastic improvements from Ritux and I want to know what we all share in common (because these are people who have been given VERY different diagnoses by doctors).

I have no doubt rituximab does greatly help some diseases, that's not in question here. What we are talking about whether it helps ME/CFS.

This assumes that all ME/CFS is caused or maintained by a virus (vs. autoimmunity or another cause) and I am just not sure that we know yet that this is the case. Perhaps the cohort in Norway involved people with co-morbid (or misdiagnosed) autoimmune conditions?

Most cases of ME/CFS start after viral infection, so we know that there is viral involvement in the trigger. It's possible the infection might trigger some autoimmunity, so a viral onset does not exclude autoimmune involvement.

I think that we have a very different list b/c I did not even join PR until mid 2014 and everyone that is on my (informal) list had Rituximab after that point. I am also including people who are in two private FB groups that I belong to and are not members of PR (but I think that they are important b/c many of them were also initially given "CFS" diagnoses like I was).

Did you ensure that the people on your list are ME/CFS patients who satisfy at least the CDC Fukuda criteria, and preferably the CCC? And did you follow up of these people long term as far as was possible, as opposed to drawing conclusions based on their initial impressions of whether rituximab was helping?

I have people on my list who reported initial improvement, but in the long term the reported rituximab did not help. So follow-up is important where possible. I PM'ed patients in some cases to get a follow up report from them.

It can take days work to collate all the results of all these patients.

 

[Rufous McKinney]

I am happy to share and wish that I had my entire story

Thank you for providing more detail on your incredibly complex story that includes feeling better. It must be so intellectually frustrating to just really wonder about all this. It is amazing you got this far and are doing this well.

My path to wellness may detour: as in a few weeks I levitate to a foreign country for a while, to see my daughter.

I plan to: Visit a Shaman. No double blind. No Placebo. No controls. And maybe: no side effects

 

[jaybee00]

@redrachel76

What other drugs didthis patient receive in addition to Rituximab for cancer? Did she receive cyclophosphamide? Response may have been to cyclophosphamide (if she received), not Rituximab.

Thanks

 

[Gingergrrl]

@Hip, I apologize that I'm not going to get to search for the article that I mentioned tonight but plan to do this tomorrow. I am now very curious if the study that I thought was "Phase 2" was actually a different study also conducted by Fluge, Mella (and several other researchers).

F&M are talking about the first signs of improvement here (not the maximum level of improvement achieved by the patient later down the line), and they say on average these first signs come at 23 weeks (5 months)

I completely agree with this and it is why I used the word "responder" vs. the word "remission". We could tell early on that I was a responder but the first time that I ever felt that I was in remission was at the 9-month mark when I could walk without the wheelchair. In my own case I used very objective markers (like being able to walk without wheelchair or being able to pass a basic spirometry/ PFT test) vs. subjective ones like "fatigue".

That is to say, in some rituximab patients the first signs of improvement come as early as 8 weeks (2 months), or as late as 66 weeks (15 months

I agree with this as well (yay, we agree on something ) and it was actually at the 13-month mark of Rituximab that my muscles were strong enough to start PT and Rehab Pilates but not until 15-months that I could really attempt most of the PT/ Pilates exercises.

As for when the full benefits arrive, I am not sure if F&M state that. But if the first signs can come as late as 15 months, one could imagine that in some cases it might be up to 2 years before the full benefits arrive.

I absolutely agree with this as well. It will be two years for me in early August and I continue to see new benefits now (but we continue to keep my B cells at zero).

I have no doubt rituximab does greatly help some diseases, that's not in question here. What we are talking about whether it helps ME/CFS.

This is probably one of the biggest points where we disagree but I do not rule out Rituximab as a potential treatment for a sub-set of people with ME/CFS (and I am not referring to my own case vs. other people such as Rachel's friend who this thread is about).

I am also very interested in the VAST group of people who received ME/CFS or "CFS" diagnoses that later turned out to be misdiagnosed. I have found that the tendency (in the on-line world) when someone achieves remission is to say, "Well that person was never really sick" which is absurd in my mind and I wish it did not happen (and I am NOT referring to you, I have just seen it repeatedly in various places).

Most cases of ME/CFS start after viral infection, so we know that there is viral involvement in the trigger. It's possible the infection might trigger some autoimmunity, so a viral onset does not exclude autoimmune involvement.

We agree on this and I also believe that most cases of ME/CFS begin with a viral infection, like my illness did. My case started out as classic Mono/EBV and then ten months later a post-viral syndrome. I had IgM+ EBV titers for about 3 years after Mono (plus IgM+ for VZV which was odd) and then it suddenly all shifted into autoimmunity.

Did you ensure that the people on your list are ME/CFS patients who satisfy at least the CDC Fukuda criteria, and preferably the CCC? And did you follow up of these people long term as far as was possible, as opposed to drawing conclusions based on their initial impressions of whether rituximab was helping?

I did not ensure any of this and not sure how it is possible when 99% of doctors (in the US) are not doing this. If the person reported that they have ME/CFS (like people do here on PR), I did not question their diagnosis or if it was through Fukuda or CCC and I accepted it at face value. I also accepted their subjective experience that they experienced a benefit from Rituximab since I am not in their shoes.

I have people on my list who reported initial improvement, but in the long term the reported rituximab did not help. So follow-up is important where possible. I PM'ed patients in some cases to get a follow up report from them.

I also spoke with people via PM, e-mail, text, phone, etc, (not strictly b/c of Rituximab by any means vs. that I am in touch with a lot of people off the board in general). I encountered several people like you describe who initially felt a benefit from Ritux but later said that it did not work and others, like me, who were longer term responders. Believe me that I wanted to get as much info as humanly possible before starting it myself! But can I say that any of these people, including myself, are in permanent remission... sadly no.

It can take days work to collate all the results of all these patients.

I agree and I have spent a vast amount of time on this but sadly my record keeping skills are not as good as yours especially after losing everything I had to mold in mid 2015 and then being displaced for six months after that. I realize that everything I have (including my own case) is considered "anecdotal" but I've never understood why anecdotal experiences are dismissed so easily?

Thank you for providing more detail on your incredibly complex story that includes feeling better. It must be so intellectually frustrating to just really wonder about all this. It is amazing you got this far and are doing this well.

I am happy to share it and truly feel that if any piece of my story can help someone down the line (whether a patient or doctor) that it was worth me getting sick. I have to find a silver lining in all of this.

And "intellectually frustrating" is a perfect way to describe this and thank you for describing that feeling! I have met so many on PR who have unbelievably strong science backgrounds and can understand something immediately that takes me days or weeks of research (or I may never understand it) but I don't stop trying.

My path to wellness may detour: as in a few weeks I levitate to a foreign country for a while, to see my daughter.

Wow, I didn't realize (or remember?) that your daughter was in another country but I knew her due date was soon. I am excited for you (if you are well enough to travel?) and wish you a safe journey.

I plan to: Visit a Shaman. No double blind. No Placebo. No controls. And maybe: no side effects

I am with you in that if we all wait for double blind, placebo controlled trials, we will all be dead first which is not acceptable to me. I have no opinion re: visiting a shaman and my experience is with more traditional doctors (although many view my treatment choices as risky and non-traditional). Although to my doctor, once he saw my autoantibodies in early 2016, he felt that high dose IVIG was truly the only logical choice (and I agreed and did extensive research again but most of it would be considered "anecdotal").

 

[Gingergrrl]

@redrachel76 What other drugs did this patient receive in addition to Rituximab for cancer? Did she receive cyclophosphamide? Response may have been to cyclophosphamide (if she received), not Rituximab. Thanks

I am curious about this, too, and many of the cancer patients at the infusion center where I did IVIG & Rituximab were getting R-CHOP chemotherapy (in which the "R" is Rituximab and the "C" is cyclophosphamide).

 

[Hip]

I did not ensure any of this and not sure how it is possible when 99% of doctors (in the US) are not doing this. If the person reported that they have ME/CFS (like people do here on PR), I did not question their diagnosis or if it was through Fukuda or CCC and I accepted it at face value. I also accepted their subjective experience that they experienced a benefit from Rituximab since I am not in their shoes.

If they were diagnosed by their doctors has having ME/CFS, that's good enough.

This is probably one of the biggest points where we disagree but I do not rule out Rituximab as a potential treatment for a sub-set of people with ME/CFS (and I am not referring to my own case vs. other people such as Rachel's friend who this thread is about).

What are we disagreeing on here, just to be clear?! Whether rituximab might work for a specific subset of ME/CFS patients? I am open to that possibility.

I just wish places such as the Open Medicine Institute who are experimenting with rituximab for ME/CFS patients would detail their success rate, and any info they have on the sort of ME/CFS patients who do well on rituximab. Honest information that is, not wishful thinking.

Kolibri Medical in Norway is the other place that treats ME/CFS with rituximab, and when one patient enquired about their success rate, they claimed rituximab treatment cures ⅓ of ME/CFS patients, makes an improvement in another ⅓ of patients, and has no effect in the final ⅓ of patients. Ref: 1

Well the phase III trial and the patients posting on the PR forum simply do not reflect this one-third cure and one-third improvement rate claimed by Kolibri (who of course are a commercial operation profiting from rituximab treatment).

 

[Gingergrrl]

If they were diagnosed by their doctors has having ME/CFS, that's good enough.

But I was diagnosed by at least 5-6 doctors as having ME/CFS which is the point I was trying to make!!!

Two ME/CFS specialists (including Dr. Chia) initially gave me this diagnosis. From 2013 to early 2016, I believed whole-heartedly, and would have sworn on a bible, that this was my diagnosis. And yet, ultimately, it turned out not to be. But why do I overlap with so many ME/CFS patients re: POTS and MCAS? I know there is some connection between all of this that is not yet discovered.

What are we disagreeing on here, just to be clear?! Whether rituximab might work for a specific subset of ME/CFS patients? I am open to that possibility.

Maybe we are not actually disagreeing, I am not sure. I think part of my confusion will resolve once I can find the studies that I was referring to as "Phase 2" and "Phase 3" and confirm that we are both indeed talking about the same studies which I think we are not. I also feel that 500 mg is too low of a dose for many people vs. the 1000 mg dose that was given at Kolibri and in the study that I am going to try to find tomorrow.

I just wish places such as the Open Medicine Institute who are experimenting with rituximab for ME/CFS patients would detail their success rate, and any info they have on the sort of ME/CFS patients who do well on rituximab. Honest information that is.

I was initially a patient of OMI but transferred to CCD when Dr. K and Dr. C left OMI to establish their own practice. I agree that it would be great if all of this info could get published some day but I disagree that either OMI or CCD is not giving out honest information (if this is what you meant)?

Kolibri Medical in Norway is the other place that treats ME/CFS with rituximab, and when one patient enquired about their success rate, they claimed rituximab treatment cures ⅓ of ME/CFS patients, makes an improvement in another ⅓ of patients, and has no effect in the final ⅓ of patients. Ref: 1

My main point about Kolibri (which I now hope is correct?) is that I thought they gave every patient 1000 mg doses (regardless of their BSA) and that they did this because it was the dose given in the F&M Phase 2 Study. My own doctor felt that 1000 mg was too high of a dose for me (b/c I do not tolerate a large amount of fluid due to third spacing from MCAS) so we went with the BSA formula for autoimmune dosing which put my dose at 600 mg (which he felt was adequate for me) even though he had other patients who did do 1000 mg dosing.

Well the phase III trial and the patients posting on the forum simply do not reflect this one-third cure and one-third improvement rate claimed by Kolibri (who of course are a commercial operation profiting from rituximab treatment).

I agree that they are a commercial operation and am in no way whatsoever defending Kolibri. In my case, my doctor made zero profit from me doing Rituximab and my MCAS specialist ended up being the prescriber so I could do the infusions locally. The profit solely went to my insurance company and my infusion center.

 

[Hip]

But I was diagnosed by at least 5-6 doctors as having ME/CFS which is the point I was trying to make!!!

I am not too clear on the point that you are trying to make.

Obviously a small percentage will be incorrectly diagnosed by doctors, and that will be the case in any disease. But if you are just gathering rituximab treatment stories from ME/CFS forums, you just have to live with that inaccuracy.

A good study would I hope more rigorously check their patient cohort, thoroughly questioning each patient and checking them against the CCC or similar.

I was initially a patient of OMI but transferred to CCD when Dr. K and Dr. C left OMI to establish their own practice. I agree that it would be great if all of this info could get published some day but I disagree that either OMI or CCD is not giving out honest information (if this is what you meant)?

Well the OMI or CCD are not giving out any information, which I find strange, given Dr Kogelnik's interest in ME/CFS research. But Kolibri are, and what Kolibri say does not seem to square with the phase III study. Nor the rituximab stories posted on this forum.

So which one is correct? I suspect Kolibri may be exaggerating. I tend to trust patient accounts on this forum, as long as the accounts are from reasonably scientifically minded patients (rather than the purely alternative medicine crowd who I find sometimes lack the ability to articulate their results in a precise fashion).

 

[Gingergrrl]

@Hip I am going to reply to your above post tomorrow but was hoping you (or someone) could explain two things which I would be very grateful to understand!

1) Is it possible for there to be two (or more?) different studies/articles called “Phase 2” within the same trial? How can one be from 2011 and one be from approx 2015 or 2016 and both be called “Phase 2”?

2) What does “500 mg/m2” mean? I hope I have written this correctly! I am going to find my notes but when my doctor calculated my dose using the BSA formula, it was calculated using a dose of 375 mg of Rituximab (not 500 mg) and the formula in the package insert also uses 375 mg in the BSA formula. Is this a different system of BSA calculation than what Fluge & Mella used? I am referring to the package insert of “Rituxan” in the US which is possibly different than “Mabthera” in Norway/Europe?

 

[Hip]

1) Is it possible for there to be two (or more?) different studies/articles called “Phase 2” within the same trial? How can one be from 2011 and one be from approx 2015 or 2016 and both be called “Phase 2”?

Yes, in my earlier post, I listed two studies that are labeled phase II: this 2011 blinded placebo controlled one, and an unblinded (open label) 2015 one. The second one might be the one you were thinking of.

What does “500 mg/m2” mean?

m2 means square meters (of body surface area), so 500 mg/m2 means that you give the patient 500 mg of rituximab per square meter of their body surface area.

You don't measure each patient's body surface area directly, but you use a BSA formula which estimates that surface area based on a patient's weight and height. There are different version of the BSA formula which give very slightly different results, but that's neither here nor there.

 

[Hip]

By the way, @Gingergrrl, in the rituximab Facebook groups you followed, were there any reports of adverse effects?

As you know, with ME/CFS patients trying rituximab, to date there has been one death, two severe worsenings of ME/CFS, and several other adverse effects I have read about, such as a nasty Actinomyces bacterial lung infections which required surgery to remove the many lung lesions. (There may be more, but those are the ones I know about).

I am just wondering what adverse effects appeared in the Facebook groups.

 

[Rufous McKinney]

Wow, I didn't realize (or remember?) that your daughter was in another country but I knew her due date was soon. I am excited for you (if you are well enough to travel?) and wish you a safe journey.

Yes, my fabulous daughter relocated her entire existence. Married a Oaxacan. Lives in this fabulous gorgeous exciting wondrous place. And wants me to relocate and move there also. When I was there a year ago, I was less sick there. I think I need that medicine. I feel more alive there.

Thats our actual plan. Its my Hearts Desire. And its: really hard to imagine and quite challenging to manifest, especially in this condition (ME, and all other details about living).

We went 7 months living in RVs after the Incineration event here. I owned technically almost nothing. That was: when I should have just sailed off. But the health deteriorated so badly. I just had to: really dig in here and do nothing but: rest and try to fix this mess.

 

[Rufous McKinney]

I have no opinion re: visiting a shaman and my experience is with more traditional doctors

Well I am really grateful the system worked for you; your situation was DIRE. And they Rose to the Challenge.

A full round of applause!!

I figure Visit the Shaman: at least it would generate a great short story or general adventure report. Can't hurt I presume. I"m not going to ingest anything mysterious.

There is some potential that ayahuasca: can treat the Metabolic Trap. But I don't feel very experimental at the moment.

 

[Gingergrrl]

I am not too clear on the point that you are trying to make.

No worries and I was just trying to say that approx 30-40% of patients receive a misdiagnosis of "CFS" (in the US) and that this would include patients on forums like PR (although probably a much lower percent). Many of the people who contact me via PM are those who have received unclear or alternative diagnosis but almost 100% of the time ask me to please not share publicly b/c they are concerned if they do not have ME/CFS they might not be allowed to post here (or they just want to maintain their privacy as they are trying treatments). And this is a general statement, not pertaining to Rituximab, although in some cases, it did.

A good study would I hope more rigorously check their patient cohort, thoroughly questioning each patient and checking them against the CCC or similar.

I agree this would be great but I never had a doctor go through a list of criteria with me (let alone CCC)!

Well the OMI or CCD are not giving out any information, which I find strange, given Dr Kogelnik's interest in ME/CFS research.

I have never been a patient of Dr. Kogelnik and have no idea what research he is doing at this point. CCD is focused on providing clinical care and is not conducting research studies like OMI.

I suspect Kolibri may be exaggerating.

That is my feeling as well.

Yes, in my earlier post, I listed two studies that are labeled phase II: this 2011 blinded placebo controlled one, and an unblinded (open label) 2015 one. The second one might be the one you were thinking of.

I was unable to find the printed copy of the article at home but I now suspect that it must be the 2015 study that you linked above. It definitely 100% is not the 2011 study b/c the one I am referring to was released after I joined PR in mid-2014. Can you explain (in very basic terms ) how a study can have two different parts called "Phase 2"? And I just mean in general, not this Ritux study. I think this is what greatly confused me b/c wouldn't the first part be called "Phase 1" and each phase have a new number? Or is this not how studies work?

m2 means square meters (of body surface area), so 500 mg/m2 means that you give the patient 500 mg of rituximab per square meter of their body surface area. You don't measure each patient's body surface area directly, but you use a BSA formula which estimates that surface area based on a patient's weight and height. There are different version of the BSA formula which give very slightly different results, but that's neither here nor there.

This confused me as well b/c my doctor (and the Rituximab packaging info) uses a BSA formula of 375 mg/m2 and not 500 mg/m2 to calculate body surface area. I would assume that using the first formula, that you would end up with a lower dose per patient than using the second formula (or is this incorrect)? My understanding of how to calculate this formula is less than zero and apologize if my questions are stupid

On a separate note, I looked at the second Phase 2 study that you linked (from 2015) and it says:

29 patients were included for treatment with rituximab (500 mg/m2) two infusions two weeks apart, followed by maintenance rituximab infusions after 3, 6, 10 and 15 months, and with follow-up for 36 months.

So if I am reading this correctly, it means that each patient received ALL six Rituximab infusions using the BSA formula (which precisely calculates their dose to their individual body surface area). It also says this as it's conclusion statement:

In a subgroup of ME/CFS patients, prolonged B-cell depletion with rituximab maintenance infusions was associated with sustained clinical responses. The observed patterns of delayed responses and relapse after B-cell depletion and regeneration, a three times higher disease prevalence in women than in men, and a previously demonstrated increase in B-cell lymphoma risk for elderly ME/CFS patients, suggest that ME/CFS may be a variant of an autoimmune disease.

This makes sense to me that it is (1) Only a sub-group (2) This sub-group fits with an autoimmune disease b/c more women are affected than men and (3) Prior research has shown that ME/CFS patients are at an increased risk of lymphoma when they become elderly which is a B-cell driven disease! (I believe that lymphoma is the third leading cause of death in ME/CFS patients after suicide and heart failure). So all of this makes sense.

However, in the Phase 3 Study, they only followed the BSA formula for the first two infusions (the loading dose) but then for the remaining four infusions, everyone received 500 mg regardless of their BSA. So if someone had a BSA dose of 600 mg (like me) or of 865 mg (like the average patient that you calculated) then their dose was too low in Phase 3. This is the discrepancy that I was trying to explain earlier and hoping someone can explain to me b/c in my opinion, it remains a confounding variable in the study which is a bummer.

By the way, @Gingergrrl, in the rituximab Facebook groups you followed, were there any reports of adverse effects?

I want to clarify that I never joined any FB groups that were specifically about Rituximab. I belonged to many groups (on MCAS, IVIG, LEMS, N-Type Calcium Channel autoantibodies) that I didn't think I could keep up with more at that time that! In addition, between the groups that I was already in, there were a huge number of people who had done (or were still doing) Rituximab and I was able to ask them a lot of questions. I did not find a single report of adverse effects but I found many non-responders in which Ritux did nothing for them at all.

As you know, with ME/CFS patients trying rituximab, to date there has been one death, two severe worsenings of ME/CFS, and several other adverse effects I have read about, such as a nasty Actinomyces bacterial lung infections which required surgery to remove the many lung lesions. (There may be more, but those are the ones I know about).

I know that side effects including death can occur (plus the risk of PML) but my doctor and infusion center said that the risks are higher in people who are already immuno-compromised in some way (from cancer, HIV, etc) or had a history of TB or hepatitis (none of which pertained in my case). My biggest fear was being allergic and having anaphylaxis but luckily this did not occur. All of the patients that I talked to (I believe 100%) pre-medicated with IV Benadryl or other meds prior to the infusion (myself included). Next week will be my 8th infusion and I know that I am very lucky not to have had any side effects whatsoever. Another thing that I almost universally found was that patients found IVIG significantly harder to tolerate than Ritux (also myself included).

Yes, my fabulous daughter relocated her entire existence. Married a Oaxacan. Lives in this fabulous gorgeous exciting wondrous place. And wants me to relocate and move there also. When I was there a year ago, I was less sick there. I think I need that medicine. I feel more alive there. Thats our actual plan. Its my Hearts Desire. And its: really hard to imagine and quite challenging to manifest, especially in this condition (ME, and all other details about living).

Wow, this sounds amazing and maybe it will still happen some day.

Well I am really grateful the system worked for you; your situation was DIRE. And they Rose to the Challenge.

It was solely b/c of one doctor who believed in me, and kept searching for answers, and battled my insurance until we got approval or none of this would have happened. The list of doctors who did not help me is too long to even think about

 

[Rufous McKinney]

that approx 30-40% of patients receive a misdiagnosis of "CFS"

The entire diagnostics is a mess and I doubt its reliability. Having a possibly remotely accurate statistic would sure be nice.

In my case, no tests that have any relationship to ME/CFS have been conducted including most of the rule out other things. I was declared SEID over a loudspeaker, about two minutes after figuring that's what I have.

Since the 1990s, no doctor has indicated I had Chronic Fatigue Syndrome, or anything else with a name. Thats at least four differing Primary Care providers and five insurance companies.

so I laugh when I see projections of how many tons of illicit drugs were NOT intercepted at the border, AND how many people likely have ME/CFS and related: confoundments. Hi red underlining, not a word.

 

[Rufous McKinney]

It was solely b/c of one doctor who believed in me, and kept searching for answers

Do light candles for this doctor.

 

[Hip]

This confused me as well b/c my doctor (and the Rituximab packaging info) uses a BSA formula of 375 mg/m2 and not 500 mg/m2 to calculate body surface area.

That's not a formula to calculate body surface area; it's just tells you what dose to give once you have calculated the area.

For example, if someone has a body surface area of say 1.7 square meters, then the dose to be given is 1.7 x 375 mg = 638 mg.

So if I am reading this correctly, it means that each patient received ALL six Rituximab infusions using the BSA formula (which precisely calculates their dose to their individual body surface area). It also says this as it's conclusion statement:

That's right, all doses were individually tailored according to body surface area.

 

[kangaSue]

Talking of misdiagnosis, if the person the original poster is asking about had been ill for less than five years with suspected ME/CFS when they were found to have a cancer too, a differential diagnosis to explain responding to rituximab could be that it was a paraneoplastic syndrome occuring with Lambert Eaton's Myasthenic Syndrome instead.

A paraneoplastic syndrome occurs in up to 60% of LEMS cases. No mention of what type of cancer was involved here, small cell lung cancer or breast cancer are the most common ones to occur but it can involve man other cancer types.

 

[Art Vandelay]

As you know, with ME/CFS patients trying rituximab, to date there has been one death, two severe worsenings of ME/CFS, and several other adverse effects I have read about, such as a nasty Actinomyces bacterial lung infections which required surgery to remove the many lung lesions. (There may be more, but those are the ones I know about).

A sad story of worsening on rituximab: https://livingwithchronicfatiguesyn...18/07/29/my-experience-with-rituximab-for-me/