Rituximab??

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Hi guys,
Forgive me for my poor ability with English, since I am ill, it is difficult for me to communicate and it is not my native language. I would like to ask about IVIG, rituximab, and apheresis. I have been bedridden at home without being able to leave for 2 years, although I have some autonomy.
My most disabling symptoms are cognitive, tinnitus, dizziness, brain fog, blurred vision, trouble concentrating, focusing ... IVIG helped me, but it wasn't enough, and they suggested rituximab.
I have positive autoimmunity markers, but are also prone to herpes and viral infections. Seeing the deterioration of Dafoe and someone else after receiving it scares me to take it. My question is: does anyone know ai whitney dafoe had positive autoimmunity markers? Did someone with positive autoimmunity react badly to rituximab? Could plasmapheresis be effective? thanks for helping and always being so kind. 🙏
 

Living Dead

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I have positive autoimmunity markers, but are also prone to herpes and viral infections.
What is the name of these markers? Did you take the tests from celltrend.de?

In my opinion, if IVIG (removes infections) makes things better, Rituximab (reduces the immune system) will make things worse.

Instead, try IVIG + Valtrex + Equilibrant for 4 months.
 
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At my local hospital I made positive beta 1 and 2 and alpha antibodies, achr positive antibodies, positive ANA antibodies and positive non-organic antibodies as well. I have low c3 and c4 add-ons. I don't have much knowledge about the disease and the brain fog prevents me from investigating. thanks for the suggestion.🙏
 

Judee

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First, your English seems good so please don't worry about it too much. Also, have you looked at the CCC criteria. (I've attached the document. Hope it is not too difficult for your brain fog right now. :()

Second, we don't have biomarkers for ME. We still don't know exactly what it causing this disease so for someone to tell you something will or will not work for you--they can't know that. Everyone of us here is different.

However, I do think if you have viral titers you will need to address those at some point too just as @Living Dead said.

Anyway, I'm going to tag @Gingergrrl because she doesn't consider that she has ME (not saying you don't though). It's just that maybe what you have is similar to what she experienced and maybe she can therefore advise you better.

(Hope you don't mind me tagging you so much @Gingergrrl. :))
 

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thank you for being so kind in replying. I can't imagine the strain on our circumstances.
Can you have PEM without M.E.? sometimes I wonder if I don't have something else autoimmune and rituximab might work, but I really do meet all the M.E. criteria. 😔
 

Living Dead

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At my local hospital I made positive beta 1 and 2 and alpha antibodies, achr positive antibodies, positive ANA antibodies and positive non-organic antibodies as well. I have low c3 and c4 add-ons. I don't have much knowledge about the disease and the brain fog prevents me from investigating. thanks for the suggestion.🙏
You need to fix these as soon as possible. Normally doctors would give a course of Prednisolone first, and only if that didn't work, Rituximab.
 

heapsreal

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Hi guys,
Forgive me for my poor ability with English, since I am ill, it is difficult for me to communicate and it is not my native language. I would like to ask about IVIG, rituximab, and apheresis. I have been bedridden at home without being able to leave for 2 years, although I have some autonomy.
My most disabling symptoms are cognitive, tinnitus, dizziness, brain fog, blurred vision, trouble concentrating, focusing ... IVIG helped me, but it wasn't enough, and they suggested rituximab.
I have positive autoimmunity markers, but are also prone to herpes and viral infections. Seeing the deterioration of Dafoe and someone else after receiving it scares me to take it. My question is: does anyone know ai whitney dafoe had positive autoimmunity markers? Did someone with positive autoimmunity react badly to rituximab? Could plasmapheresis be effective? thanks for helping and always being so kind. 🙏
Being prone to herpes and viral infections personally would scare me if going on rituximab. I have heard of several cfsers who have had issues with herpes infections get severe breakouts and deterioration in their overall wellbeing.
I might be totally off base but sometimes i think antibodies are probably our only decent viral defense as many cfsers innate immune system is shot ie low nk function and low cd8 T cell function which has been shown in cfs studies.
But if i were to do it, id want a really good dr who understands cfs. Id want to be on antivirals as well as antibiotics prophylacticly. Im not sure how advanced medicine is but immunotherapy used in cancer patients, i wonder could be used if one is severely ill from an infection, something to stimulate nk and t cell production or maybe even interferon. All i have written is out of my depth but stuff id ask a dr about.
 

Learner1

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I have positive autoimmunity markers, but are also prone to herpes and viral infections. Seeing the deterioration of Dafoe and someone else after receiving it scares me to take it.
My doctor, who was an AIDS doctor for 30 years before treating ME/CFS patients, tests for and treats all infections before putting patients on Rituximab. The risk with wiping out B cells which are antibodies, without killing off infections first, is that infections can potentially run amok without antibodies to fight them. He also has patients on intravenous immunoglobulins from donor antibodies for several months to help battle any infections before starting Rituximab.
Could plasmapheresis be effective?
In the short term, yes. It can wipe out "bad" antibodies temporarily, until they grow back, giving you an idea if Rituximab might be a better long-term solution. It is rarely done in the United States, But possible, and seems to be slightly more available in Europe. I am not sure about other countries, But I would assume most would have it at least somewhere.
Rituximab doesn’t work for MECFS— I don’t know who is recommending this treatment for you (or why it’s being recommended).

https://forums.phoenixrising.me/threads/rituximab-phase-iii-negative-result.56244/
The problem with this study is it was on a random group of ME/CFS patients, with a variety of conditions. Some may have been appropriately chosen and benefited while others likely did not have the appropriate characteristics to be prescribed Rituximab. As @Judee says, everyone is different.

My doctor carefully selects patients for this treatment. I also went to a large medical research center to get a second opinion from another doctor who was an expert on both immunodeficiency and autoimmunity. We discussed the potential use of stem cells, Bortezimub and Rituximab, and he thought Rituximab was my best, least risky choice, and it just might work. He recommended the exact protocol my ME/CFS specialist had, which I went ahead with and benefited from.
In my opinion, if IVIG (removes infections) makes things better, Rituximab (reduces the immune system) will make things worse.
It may be your opinion, but IVIG provides antibodies. While they may help with infections, most of us are also given some sort of anti-infective, like an antiviral like Valtrex or Valcyte, antibiotics appropriate for the bacterial infection, an antifungal or a drug appropriate to kill a parasite. IVIG can also, over time, help with autoimmunity.

While Rituximab was originally approved for certain cancers, it is now approved for multiple types of autoimmunity. It kills off CD20 cells which create the autoimmune antibodies. If one has symptoms caused by "bad" antibodies, removing them can be helpful. The treatment is given multiple times, as the B cells mature and more are made, until they are all killed off. If you don't have this problem but you do have live infections, it could definitely be a problem, but that's why you check for and kill off Infections first. If the infections are gone and one has one or multiple types of bad antibodies, I can provide a great deal of relief.
Instead, try IVIG + Valtrex + Equilibrant for 4 months
If you have a problem that these will solve. I tried Valtex, which didn't do too much, but was more successful with Valcyte and antibiotics for the combination of infections I had.

As for Equilibrant, I found 2 sets of ingredients on the web:

1) astragalus root extract, shrubby sophora root extract, olive leaf extract, licorice root extract, and shittake mushroom extract.

2) active ingredients, plus Dextrose, Cellulose, Silicon Dioxide, Cellulose Gum, Magnesium Stearate (Vegetable Source), titanium Dioxide, Glycerine, Stearic Acid (Vegetable Source), Yellow #5, Blue #2 and Carnuba Wax

I'm not sure which is correct or if both are, but as someone with hyper POTS, licorice root could raise blood pressure alarmingly which could be a stroke risk, and dextrose is typically a corn derived sugar, and many of us are allergic to corn, which could lead to anaphylaxis.

It is always good to work with a doctor to identify ones exact issues and treat accordingly rather than just following someone's advice which could prove dangerous for someone else
At my local hospital I made positive beta 1 and 2 and alpha antibodies, achr positive antibodies, positive ANA antibodies and positive non-organic antibodies as well. I have low c3 and c4 add-ons.
Having a number of problematic antibodies may create a very good case for trying Rituximab. You would want to ensure you do not have any infections first, and if so, treat with IVIG or plasmapharesis, and then Rituximab if one or both are helpful. One would assume you are under the care of doctors who are well versed in the use of these tools, and it would be wise for a parent, partner, friend or caregiver to accompany you to do for appointments to understand the treatment and the potential for risks and benefits

Rituximab can be risky if you contract COVID while on it, because you lose your antibodies. I stopped it one infusion short of the original treatment plan because COVID broke out that month. I waited for over a year for my CD20 cells to grow back and start making antibodies.
I really do meet all the M.E. criteria. 😔
Sounds like you do, but you are lucky to have found some other, treatable diagnoses, and a doctor willing to treat you.
You need to fix these as soon as possible. Normally doctors would give a course of Prednisolone first, and only if that didn't work, Rituximab.
No, doctors would not normally prescribe prednisolone first. Each patient is unique and a lot is not normal about these situations.

It would be wise to find all antibodies you'll want to find first, before embarking in these treatments, as IVIG gives you don't antibodies, which makes testing your own antibodies useless and Rituximab wipes out antibody making nh B cells, and therefore, antibodies.

IVIG can be given along with treatments to fight infections. It is extremely prudent to identify all infections before Riruxumab. As doctors typically look for antibodies to infections, You would need to complete this set of tasks prior to starting IVIG. If it doesn't get done in time, then the ways you would look for any remaining infections are through PCR tests or culture.
Being prone to herpes and viral infections personally would scare me if going on rituximab. I have heard of several cfsers who have had issues with herpes infections get severe breakouts and deterioration in their overall wellbeing
This is why looking for and treating all herpesviruses and other infections with antivirals etc. BEFORE wiping out all your antibodies with Rituximab is an important step. It is also wise to support the body and immune processes with nutrients like antioxidants, methylation nutrients, amino acids, zinc, etc.
All i have written is out of my depth but stuff id ask a dr about.
That seems very true.

It is very wise to read all you can in any treatment, understand the ingredients, mechanism of action, type of patient it can be helped by, whether you fit this profile and discuss with those close to you and your doctor. Many treatments are reversible - some are not, so before doing them you must be assured of why you are doing them and what to expect. And if you don't understand them, that you find someone you trust who can help you understand what you are doing and why. Having a knowledgeable doctor is essential, and getting a second opinion, as I did, is wise.

Best wishes...:hug:
 
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Thank you very much for the detailed information, your knowledge does not cease to amaze me.
I am scared to take antivirals because I have seen that they damage the mitochondria. I had a blood gas test and I have low oxygen saturation in my blood. This worries me, but no doctor gave it importance.
My current treatment is mestinon, prednisone 2.5 and IVIG (0.5 g / k every month), that has helped me, but I am still very limited.
Despite this I think my MCAS is worse since prednisone (does it make sense?), My doctors insist on taking it and I certainly think it helped with something (although I don't really know with what).
I am at a very difficult point, I am 34 years old, I am an engineer and I was looking for a baby with my husband until this disease appeared. After this I have lost everything.
The disease is being a great teaching, but there are days when my strength is not enough and I wonder if I will get enough strength to be able to fight for longer against this giant who has stolen everything from me.
You are very generous for informing me and trying to help. 🙏💙
 

Learner1

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You are very welcome. What country are you in? It might help in understanding what resources may be available.
I am scared to take antivirals because I have seen that they damage the mitochondria.
A lot of drugs can damage mitochondria, But there are strategies to repair them which Ive found useful. The thing is that viruses can damage mitochondria too. Herpesviruses, for example, cause mitochondrial fragmentation, and many infections lead to peroxynitrite production which damage mitochondrial membranes and impair mito complex 1.

It's likely better to treat the infections then repair any damage then to have an infection slowly destroying you...
. I had a blood gas test and I have low oxygen saturation in my blood.
Not surprising. Did they check d-dimer, thrombin/antithrombin, or any other clotting markers? Some of us are on supplements or meds that help thin the blood. Hyperbaric oxygen or other oxygen therapies can be helpful. Beating back infections is also helpful.

Additionally, might you have any food allergies?
My current treatment is mestinon, prednisone 2.5 and IVIG (0.5 g / k every month), that has helped me, but I am still very limited.
That's a decent start. But there is a lot more that can be done.
Despite this I think my MCAS is worse since prednisone (does it make sense?), My doctors insist on taking it and I certainly think it helped with something (although I don't really know with what).
Why were you given prednisone? For adrenal insufficiency? To suppress your immune system? To reduce inflammation?

If for adrenal insufficiency, many of us take a slightly weaker steroid, hydrocortisone, which can be dosed in small doses throughout the day to improve our ability to function.

If for inflammation, it would be important to determine what is driving the inflammation. Prednisone can mask (hide) problems that could be significant clues. Is there some infection driving your autoimmunity and inflammation, then treating that would be extremely important. Or is it simply the autoimmunity, in which case, the IVIG should be helping. There are other things that can reduce inflammation like high quality high dose curcumin and Boswellia which is good for brain inflammation.

The more you can figure out the drivers, the closer to answers that help that you will be. There's a video below that might give you some clues as well.
The disease is being a great teaching, but there are days when my strength is not enough and I wonder if I will get enough strength to be able to fight for longer against this giant who has stolen everything from me.
This disease is complex. And, as you're pointing out, a great opportunity to learn. I had stage 3 cancer before this, and that was much easier to treat. I have improved incrementally, attacking one piece at a time which has helped me slowly regain function.

I think your background as an engineer will be helpful. You are experienced at problem solving and this is just one more complex problem to solve.

The attached were developed by two doctors I've never seen one is a framework for thinking about tests and treatment. The other lists many, though it's several years old, So much more is available now. And this video might be helpful to you - It is the best explanation I've seen of ME/CFS anywhere.


Take a look through all the resources, see what you think about it, and come back with a questions and maybe we can help further. It sounds like you have some decent doctors, so pressing them for more answers and more testing might be useful.
 

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Marylib

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@Xana Sounds like you have some doctors who are trying to help you and that's a good thing. And you have received some help here already too. If I were you, I wouldn't be too concerned about being diagnosed or having the doctors "believe in ME as a disease." I know it can be scary when you read about various treatments that have ended up not working out - but everyone is different. In terms of having a child, many women (but not all) find that their symptoms improve during pregnancy, so try not to worry about that either. Best wishes for improvement!
 

Gingergrrl

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My most disabling symptoms are cognitive, tinnitus, dizziness, brain fog, blurred vision, trouble concentrating, focusing ...
Anyway, I'm going to tag @Gingergrrl because she doesn't consider that she has ME (not saying you don't though). It's just that maybe what you have is similar to what she experienced and maybe she can therefore advise you better.

(Hope you don't mind me tagging you so much @Gingergrrl. :))
I do not mind you (or anyone) tagging me and I apologize for the delayed reply :). You asked if maybe the original poster had symptoms (or diagnoses?) that were similar to mine and from what she listed, none of our symptoms were the same and I did not experience any of what she mentioned (re: cognitive, tinnitus, dizziness, brain fog, blurred vision, trouble concentrating, focusing).

My core symptoms were progressive muscle weakness that affected my lungs & diaphragm and caused shortness of breath. My entire upper body was very weak and it was hard to do anything using my arms due to the lack of strength. I also had severe POTS & MCAS (plus Hashimoto's) and then was found to have LEMS.

Our symptoms were definitely different... but autoimmunity & autoimmune diseases can present in endless different ways depending on which autoantibodies are present. There are many B-cell driven autoantibodies that can cause horrific symptoms that can respond to high dose IVIG & Rituximab (or other combinations of treatments). I hope that made sense and I apologize that I was not able to read the entire thread right now. And please tag me again if my reply did not make sense :headslap:!
 
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hello,
thanks for being so kind and trying to guide me.
@Learner1 I have never analyzed the markers that you are telling me. I will study all the information you have given me and write it down to consult with my doctor.
I would like to know what supplements and medications could address this vascularity issue.
I am not Allergic to any food, but sometimes I respond poorly to some randomly.
I take prednisone to help with my autoimmunity, although I also have a lot of inflammation.

@Marylib Thank you for your words.

@Gingergrrl I read your story and I have seen that we do not share symptoms. Some people have told me that my cognitive problems, jaw pain, dry eyes ... are due to MCAS. What is your opinion?

I am glad that Rituximab helped so much in your case.

Thank you for your answers.
 
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In relation to the study with rituximab, doubts assail me.
I found a study that said that saline infusions improved autoimmune pots and dysautonomia.
One of the problems for which the study did not work was because many improved with the placebo (saline solution), could it be that the placebo was not a placebo but another possible treatment? And another question, is it possible that the responding subgroup is people with positive autoimmunity? Do you know cases of people with worsened positive autoimmunity?
Excuse me if what I'm saying is just nonsense. I am very new to all of this.
 

Gingergrrl

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@Gingergrrl I read your story and I have seen that we do not share symptoms. Some people have told me that my cognitive problems, jaw pain, dry eyes ... are due to MCAS. What is your opinion?
Those particular symptoms do not sound like MCAS but it is impossible for me to say without knowing the entire history & context.

Have you had any allergic reactions or anaphylaxis to food, meds, strong smells/odors (or other triggers that you can identify)? Do you notice a clear benefit if you take an H1 blocker, H2 blocker, and a mast cell stabilizer? Also, have you been tested for histamine, prostaglandins, tryptase, etc?

I read some of the earlier posts and I was curious what your doctors are saying re: your positive ACHR autoantibody? Have they tested you myasthenia gravis (which often correlates with positive ACHR) even though you did not mention that you have muscle weakness. Also, have they tested you for other paraneoplastic autoantibodies or those specific to autoimmune encephalitis?