Rituximab or Gleevec? MCAS/CFS/immunodeficiency

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Hello everyone! I just decided to introduce me here as well. I hope you could to help with some advice, I really need it now.
I am from very East part:rolleyes:- Russia, Saint-Petersburg. I have aggressive MCAS. Last year I am trying to survive from reaction to REALLY EVERYTHING (even from all drugs which usually tread it - like antihistamines, steroids and others).
In my others disease I have an aplastic anemia (I don't have a bone marrow - a biopsy shows just 5%), a secondary immune deficiency and of course ME/CFS (triggers are active viruses). Since 5 years ago. Lucky I am still alive. But I am in a dead point 1 year already because of aggressive MCAS.

Because of language barrier its very hard for me to reed all your posts guys:bang-head:. I apologize for my English as well, hopefully you will understand me right.

So, believe me.. you are lucky.. In Russian no one doctor knows MCAS. All researching going on in US..

I am in point to try or Ritux or Gleevec.. I don't know that is better, because I have an active bacterial and viruses infections now, which I cant stop successfully. So probably a both medicines is very bad way in this situation. But what can I do. And I am not sure I will tolerate a reaction even from a process, because it really to everything.. reaction even from water sometimes

So I will so appreciate if you could to share your thoughts - thats better to try?
I had one doctor in US - he recommended Gleevec, because sometimes it shows a good result..

Also I am thinking I have a mutation for MCAS (I thought before I don't). I will know it for sure in 2 weeks. But I already found a highest level of Aspartic acid and Valine in blood and urine. Only that abnormal there. Pretty strange, and this is a direct correlation with mutation. So I will do a test to check it for sure.

Thank you so much for attention guys!

I so hope to hear your opinions and recommendations!!
 

Gingergrrl

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In my others disease I have an aplastic anemia
I am in point to try or Ritux or Gleevec.. I don't know that is better, because I have an active bacterial and viruses infections now, which I cant stop successfully. So probably a both medicines is very bad way in this situation. But what can I do. And I am not sure I will tolerate a reaction even from a process, because it really to everything.. reaction even from water sometimes
@zaika11 I am just seeing your post from January and that you did not get any replies so I want to bump it up to the top. I remember reading it at the time but cannot remember if we spoke by PM?

Did you ever make a decision re: Rituximab vs. Gleevec (or neither)? Your situation is so complex also having aplastic anemia and immune deficiency in addition to aggressive MCAS! If you see this, I am hoping you will update us and are doing okay.
 
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Hi hi!!
Thank you for remembering, Gingergirl. Yes, we never spoke by PM(
I decided don’t use Gleevec because it will kill me for sure.. and it is also treatment for a symptoms..
So I wanted to try Rituximab, but in Russia doctors use it only in cancer case, or for autoimmune problem. I ask my doctor in CA (I have a guess we have a same one - Dr. K from CCD) to write a recommendation to use it for my doctor here, he promised, but did not.. So I lost a possibility to try it with his help in this, even I already bought Ritux.

I got in car accident 2 weeks ago, broke some bones, so trying to recovering it first.

Also I thought to write a Fluge in Norway.. What do you think about this way?

And I wanted to ask you about your progress and diet now. Did you ever try Karnivor diet? Or Keto?
 

Gingergrrl

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Thank you for remembering, Gingergirl. Yes, we never spoke by PM I decided don’t use Gleevec because it will kill me for sure.. and it is also treatment for a symptoms..
I have never tried Gleevec and it was never seriously considered for me (even when I was hospitalized for anaphylaxis in 2015). So, I can't really give much feedback about it except that I know it has worked well for some people with MCAS. What MCAS meds are you currently taking?

So I wanted to try Rituximab, but in Russia doctors use it only in cancer case, or for autoimmune problem. I ask my doctor in CA (I have a guess we have a same one - Dr. K from CCD) to write a recommendation to use it for my doctor here, he promised, but did not.. So I lost a possibility to try it with his help in this, even I already bought Ritux.
I did not realize that we had the same doctor! Are you currently in Russia or CA? Did our doc not write the recommendation for clinical reasons (b/c he decided it was not the right med for you) or did your insurance deny it, or something else? I was confused when you said that you already bought the med and was not sure if you meant here or in Russia (or if you got it through Genentech)? Please don't answer publicly if not comfortable!

I got in car accident 2 weeks ago, broke some bones, so trying to recovering it first.
I am so sorry and hope you make a full recovery (and I definitely would not try any major treatments while recovering from the car accident). I was in a horrible car accident in 2006 in which someone T-boned the front passenger side of my car and my car flipped upside down and I was trapped inside and smoke started coming out. My dog (who was a puppy at the time) was in the car w/me but thank God I had her strapped in a seatbelt harness which saved her life (and she is now 13 yrs old)! Some very kind strangers helped to get my dog out of the car after I crawled out of the car window upside down and got cut from all the glass. It was crazy and injured my neck which has never been the same.

Also I thought to write a Fluge in Norway.. What do you think about this way?
I'm confused what you would say to him since you are not his patient? Dr. K is very knowledgeable about Ritux and cases where he thinks it could be helpful (like mine) vs. others where it is not the right med or too dangerous b/c of other issues.

And I wanted to ask you about your progress and diet now. Did you ever try Karnivor diet? Or Keto?
I have never tried Karnivor diet (not sure what it is?) or Keto although I have tried a million other diets in my life. As far as MCAS, I followed the SIGHI diet (from Switzerland) for about 1.5 yrs. It is a VERY low histamine diet and was very helpful for me at that time (2015-2016). My MCAS is now in remission (from IVIG) although I still take certain precautions and carry an EpiPen in my purse.
 
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I don't use any medicine for now (because I can't tolerate it as well), I just try to manage it which the most effective anti-inflamation diet.

Yes I am in Russia now, and I am not available to go to US because I can't get a visa more:cry:

I asked Dr. K to write a recommendation for Ritux (because before he recommended to consider it in my case). He suggested it can be dangerous now in case if I have active viral infections and immunodeficiency (what is totally right), but he also understand what I dont have any other options to change situation, only to try a Ritux. So he promised he will send a letter with recommendation and protocol how to use it. And he didn't it. I was so surprised about it.. and still dont have explanation for this(

Yes in Russia we are being almost all medicine for a cash, so I bought Mabthera(Rituximab) already. But a price for all drugs usually much less US price.

I so sorry about your accident, now I know how is awful.. luckily we are alive..

I will text my thoughts about Dr. Fluge a bit later if you not mind. Because probably there is not any perspectives in this. Seems he is a scientist in university in Bergen, not a doctor now(

ps I aso have EpiPen in my bag- luckily I never used it yet
 

Gingergrrl

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Yes I am in Russia now, and I am not available to go to US because I can't get a visa more:cry:
:bang-head: :cry:

I asked Dr. K to write a recommendation for Ritux (because before he recommended to consider it in my case). He suggested it can be dangerous now in case if I have active viral infections and immunodeficiency (what is totally right)
He must have decided, based on your entire case, that it was too dangerous for you with active viral infections and immunodeficiency.

Yes in Russia we are being almost all medicine for a cash, so I bought Mabthera(Rituximab) already. But a price for all drugs usually much less US price.
Wow, so you can just purchase it for cash in Russia? Are you concerned that what you are buying is truly the medication and not something counterfeit? I have never bought meds on-line (except supplements) and am naturally skeptical. Also, I'd be worried about your safety if you tried to do this without a doctor and infusion center :nervous:

I will text my thoughts about Dr. Fluge a bit later if you not mind. Because probably there is not any perspectives in this. Seems he is a scientist in university in Bergen, not a doctor now(
No worries about writing more! Best wishes if you contact him and I hope that you find the answers you are searching for.
 
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it
Wow, so you can just purchase it for cash in Russia? Are you concerned that what you are buying is truly the medication and not something counterfeit? I have never bought meds on-line (except supplements) and am naturally skeptical. Also, I'd be worried about your safety if you tried to do this without a doctor and infusion center
No no! You just don’t know how it works here. Of course I planed to do it just in clinic where there is a resuscitator doctor and resuscitation. I am not so crazy to do it by myself:nervous:. But I will need to buy a medicine by myself first. We also don’t buy online because of safety, I buy a medicine in pharmacy here like CVS in US.
 
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This is not an answer to your question, but my sister, who has ME is also thinking of the saame thing as you, Ritux or Gleevec (or somethibg else). @zaika11 who is dr K? Is he practicing in US? How is it possible to get on contact qith him?
We live in Finland and here too docotrs do bot prescribe Ritux for anything else than cancer so we need to look outside our country for help. Russia? Estonia? Other countries in Europe.
 
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This is not an answer to your question, but my sister, who has ME is also thinking of the saame thing as you, Ritux or Gleevec (or somethibg else). @zaika11 who is dr K? Is he practicing in US? How is it possible to get on contact qith him?
We live in Finland and here too docotrs do bot prescribe Ritux for anything else than cancer so we need to look outside our country for help. Russia? Estonia? Other countries in Europe.
This is Dr Kaufman from Center Complex Disease in US(CA)
So you have a same situation as we have in Russia(
 
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This is not an answer to your question, but my sister, who has ME is also thinking of the saame thing as you, Ritux or Gleevec (or somethibg else). @zaika11 who is dr K? Is he practicing in US? How is it possible to get on contact qith him?
We live in Finland and here too docotrs do bot prescribe Ritux for anything else than cancer so we need to look outside our country for help. Russia? Estonia? Other countries in Europe.
I believe you can schedule a phone call or appointment.
In Norway there are a two doctors who did a big trial for Ritux in 2018. Fluge and Mella. But I dont know how it possible to get a contact with them.. I also would like to do it.. Let me know please if you will have a susses in this please..
 
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I believe you can schedule a phone call or appointment.
In Norway there are a two doctors who did a big trial for Ritux in 2018. Fluge and Mella. But I dont know how it possible to get a contact with them.. I also would like to do it.. Let me know please if you will have a susses in this please..
Thank you @zaika11 for your answers. I will try to get more information about the Norwegians and if I succeed I will get back to you. I fear that as the research with Ritux in Norway was ended due to lack of enough success in the treatment that also Norway does not prescribe Ritux for ME. But it is still worth a try.

Did I understand correctly that you already have Rituximab but do not have a doctor/clinic that could plan the treatment? How were you able to get the medicin? Did you get a prescription for it?
 

Gingergrrl

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No no! You just don’t know how it works here. Of course I planed to do it just in clinic where there is a resuscitator doctor and resuscitation. I am not so crazy to do it by myself:nervous:. But I will need to buy a medicine by myself first. We also don’t buy online because of safety, I buy a medicine in pharmacy here like CVS in US.
Sorry for my slow reply and you are totally right @zaika11 that I have no idea how the medical system works in Russia. I am very glad that (if you try Rituximab) that it would be in a clinic where safety precautions are taken. I was surprised though that you can buy infusion meds at a regular pharmacy (like CVS). I assume that you had a prescription for it from a doctor which confused me. Do you have a doctor in Russia who prescribed you the Ritux but is not willing to follow through with referring you to an infusion center? How does it work there?

I am not sure about the Vit D part (and did not get to read the link) but Mast Attack is a wonderful website in general. Lisa Klimas (who created and runs Mast Attack) also has a private FB group which is very helpful and has lots of great information.

I forgot did I ask before or not.. Are you positive for HHV7 and ECHO-virus?
I was not sure if you were asking me but in case you were, I was negative for HHV-7 but I was positive for one of the Echo Viruses (Echovirus 11).

I fear that as the research with Ritux in Norway was ended due to lack of enough success in the treatment that also Norway does not prescribe Ritux for ME. But it is still worth a try.
There was a clinic in Norway called Kolibri (I hope I have the name right) that administered Rituximab to patients but I am not sure if it is still there or how you get referred there.
 
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I was not sure if you were asking me but in case you were, I was negative for HHV-7 but I was positive for one of the Echo Viruses (Echovirus 11).
Echo virus in PCR? Or antibody?
Did you text PCR HHV-1/2/4/6/7 in saliva? I know a lot of case when people with CFS positive in saliva and don't in blood. And opposite as well - there is PCR in blood and there isn't in saliva.
 
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Sorry for my slow reply and you are totally right @zaika11 that I have no idea how the medical system works in Russia. I am very glad that (if you try Rituximab) that it would be in a clinic where safety precautions are taken. I was surprised though that you can buy infusion meds at a regular pharmacy (like CVS). I assume that you had a prescription for it from a doctor which confused me. Do you have a doctor in Russia who prescribed you the Ritux but is not willing to follow through with referring you to an infusion center? How does it work there?
Its because we can to buy Ritux without a prescription:) As all other drugs, except narcotic/tranquilizers/anti-depressants and like this
 

Gingergrrl

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Echo virus in PCR? Or antibody?
It was antibody testing through ARUP lab.

Did you text PCR HHV-1/2/4/6/7 in saliva?
I did not and it was a blood test.

Its because we can to buy Ritux without a prescription:) As all other drugs, except narcotic/tranquilizers/anti-depressants and like this
Wow, I had no idea that you could buy an infusion med like Ritux in Russia without a prescription! That is wild and how do they expect you to use with without an infusion center and a doctor monitoring your care? So you can get all meds without prescriptions except the ones you mentioned? I can't even imagine this and it seems very dangerous b/c you don't know if it it is the right prescription for you (I mean in general and am not referring to you specifically).
 
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It was antibody testing through ARUP lab.



I did not and it was a blood test.



Wow, I had no idea that you could buy an infusion med like Ritux in Russia without a prescription! That is wild and how do they expect you to use with without an infusion center and a doctor monitoring your care? So you can get all meds without prescriptions except the ones you mentioned? I can't even imagine this and it seems very dangerous b/c you don't know if it it is the right prescription for you (I mean in general and am not referring to you specifically).
I know that probably sounds crazy, but it reality it doesnt work so bad. Because of course it doesn’t suggest that people will use it at home, they are not crazy to use seriouse medicine by own. So they are just purchase a medicine (of course after recommendation or prescription from doctor) and after bring it to clinic/hospital for a treatment with a doctor, who prescribe it. But in pharmacy you can buy it even without a prescription.