My ritux experience so far

[Gingergrrl]

Of course I know every case is special and yours is still special among the special cases,

Thanks and I feel special now ... just teasing you. But seriously, if I can answer any other questions from my own experience with Ritux, I am happy to help! Is it an option for you at Kolibri or in the US?

 

[Benji]

@Gingergrrl I am so happy to see you here, and that you continue ritux with the first maintenance dose. So good to hear! And also that you share your knowledge, I am so impressed that you know so much.
And I am also happy that you guys discuss here, even if I will have to read some later. You guys are so good. Now I am going to read thoroughly, just wanted to say this; before I get distracted by other thoughts.

 

[frederic83]

I honestly have no idea! I tested positive twice for Coxsackie B4 and Echovirus 11 from ARUP lab, and I suspect most people test positive for both herpes and enterovirus titers, especially IgG+, but I have no statistics on that!

The titers were high for the enterovirus ? Chia considers it is positive when the titer is above 300.

 

[Gingergrrl]

@Gingergrrl I am so happy to see you here, and that you continue ritux with the first maintenance dose. So good to hear! And also that you share your knowledge, I am so impressed that you know so much.
And I am also happy that you guys discuss here, even if I will have to read some later. You guys are so good. Now I am going to read thoroughly, just wanted to say this; before I get distracted by other thoughts.

Thanks @Benji and I'm happy to share my experience but still not sure how much "knowledge" I have and Rituximab is so complex!

The titers were high for the enterovirus ? Chia considers it is positive when the titer is above 300.

My titers were both under 320 but at a one-off consult w/Dr. Chia he said that enterovirus was the cause of my medical problems. It was a strange appt (and don't want to take Benji's thread off track) but I saw him only one week prior to the autoantibody tests from Mayo which discovered the real core of my medical issues were autoimmune and took my treatment in another direction.

 

[frederic83]

My titers were both under 320 but at a one-off consult w/Dr. Chia he said that enterovirus was the cause of my medical problems. It was a strange appt (and don't want to take Benji's thread off track) but I saw him only one week prior to the autoantibody tests from Mayo which discovered the real core of my medical issues were autoimmune and took my treatment in another direction.

I read your report on your appointment with Chia. Can you give your titers, just to have an idea ? Thanks.

 

[Gingergrrl]

I read your report on your appointment with Chia. Can you give your titers, just to have an idea ? Thanks.

I'll send you a PM as soon as I can b/c it would take Benji's thread off track too much!

 

[Wonkmonk]

Is it an option for you at Kolibri or in the US?

It is an option I am currently exploring with multiple physicians. I might not need to travel to Norway or the US because I'd probably have a possibility to do it in Germany, overseen by an oncologist.

Main question at the moment is if the antiviral treatment should be given more time or if other antivirals (e.g. Valcyte) should be tried before trying Rituximab.

 

[Inara]

What about Rituximab combined with immunoglobulines?

@Wonkmonk
Is it possible you shared this oncologist's name (PM)? And, why would he give you Rituximab? (Maybe it's not ME, therefore I ask.)

 

[Wonkmonk]

Hello @Inara, yes, my treatment is for CFS/ME. I consider myself to be a textbook case, given my symptoms and diagnosis criteria (with very few exceptions).

Rituximab + IVIG is what @Gingergrrl does and as I understand that's a protocol that is mainly targeting autoimmunity. I have no evidence for any autoimmunity. In my case we suspect herpes virus, esp. EBV, as the cause.

So, therefore, we have no plans to do IVIG with or without Rituximab at this point. What I plan to do is to continue on antivirals (Valacyclovir) on which I have made substantial improvement.

Regarding the oncologist, I am very sorry to say I cannot reveal the name. He is still reluctant to participate in this effort, because it's off-label and a legal gray area in Germany, and he is also not the one who will administer the Rituximab (if we decide to do so). That would be done by a physician in my family who I know is doing it only because it's a family matter and would never offer it to other patients. The oncologist is only advising on how to adminster the drug and what control tests are needed.

Therefore, I regret that I can't give you a more positive answer and I cannot reveal the name of either physician. But that being said, it wouldn't help anyone if I did, because both physicians would 100% refuse to treat any other patient with Rituximab at this point.

Are you in Germany (or near abroad) and are you looking for a doctor who does Rituximab?

 

[Gingergrrl]

It is an option I am currently exploring with multiple physicians. I might not need to travel to Norway or the US because I'd probably have a possibility to do it in Germany, overseen by an oncologist.

That is great news and I hope this works out for you if you decide to do it.

Rituximab + IVIG is what @Gingergrrl does and as I understand that's a protocol that is mainly targeting autoimmunity. I have no evidence for any autoimmunity. In my case we suspect herpes virus, esp. EBV, as the cause.

In my case it is for autoimmunity but I had active EBV (IgM+ and early antigen positive) for several years post mono which was one of the triggers of my illness. I tried two anti-virals in 2014/early 2015 (Famvir and Valcyte) but they did not help me. Somewhere my illness shifted from viral to autoimmunity but I don't fully understand this.

 

[Inara]

Hi @Wonkmonk, thanks for your reply! Yeah, it would be Germany, but I totally understand, given the situation, that you cannot give names.

Why is, in your opinion, Rituximab+IGG only for Autoimmunity? Could you explain it more detailed?

 

[Wonkmonk]

Why is, in your opinion, Rituximab+IGG only for Autoimmunity? Could you explain it more detailed?

Isn't it? That has always been my understanding, but to be honest, I never really checked it out.

 

[Inara]

I really don't know either. It was an honest question. I am no expert in Rituximab, but I want to dig deeper. I get IGG and I don't have autoimmunity, well not officially. IGG are not solely given when autoimmunity is present. (I understood it to be a new treatment option which is studied lately, but I might be wrong.) EBV or other viruses were an example here, and of course, classically, immune defficient people get them. That's why I thought about Rituximab+IGG.

 

[Inara]

By the way, let me say thank you for your experiences and input.

 

[Wonkmonk]

@Inara You're welcome, always eager to help, if I can.

Do you feel like IGG helps you?

 

[Inara]

Yes, it does. But it's too early to say more. Yet I believe it won't cure me completely, although I gained very much from it. Maybe I'll even be able start to work part-time again. But I'll see.

 

[Benji]

Everything seems a little different now that the phase 3 result is negative.
I really am interested in the report/publication to help decide whether I should take more infusions.
But it won’t be available for some months yet. I have planned my last infusion mid December and have booked it on Kolibri and also bought plane ticket.
I have had great response. But it has always not lasted longer than the next infusion, then it has slowly faded away,
Now it is 6 months after the last infusion and I have not gotten response back yet. The hard period after each infusion last longer and longer. First 2 months, then 4 months and now 6 months and still counting.
I have suspected the cortisone was to blame. And now at Kolibri they have agreed to try without it, with more looking after. It seems that Kolibri is continuing for now.
So, any thoughts of anything?
@Jonathan Edwards ? Any other? Can also send me a message, if you like.
I do have the money, hm, don’t know still.

 

[Wonkmonk]

What do you mean with "phase 3 result is negative"? Is the latest Fluge/Mella study published?

 

[Wonkmonk]

Just saw the other thread. Ugh.

 

[Gingergrrl]

I have had great response.

Do you mean you have had a great response overall, or just to the most recent infusion (or something else)?! It's always good to hear updates from you @Benji.