My ritux experience so far

[Gingergrrl]

I wonder if there is a bit of confusion here, GG. If you had 600mg then that is not determined by your body surface area, it is just 600mg.

My doctor used a formula that was 375 mg/BSA which in my case calculated to 600 mg (but for someone of a very different height & weight than myself, the dose would have been higher or lower).

My understanding is that this is the formula that is currently used to calculate dosing in autoimmunity but that some doctors and studies do not use this formula and give 1 gram regardless of BSA. In general, my doctor was using one gram for most ritux patients but in my case felt the 375 mg/BSA was safer for me b/c I did not need as high of a dose and do not do well with IV fluids based on my history.

* I am always speaking about my own case and never that the decisions made with my two doctors apply to anyone else.

 

[Jonathan Edwards]

My doctor used a formula that was 375 mg/BSA which in my case calculated to 600 mg (but for someone of a very different height & weight than myself, the dose would have been higher or lower).

This is actually the oncology formula rather than the autoimmunity one, and it seems you have had two rather than four doses. That may be fine but I am not aware of that being used as standard in any autoimmune disease. Haematologists have tended to go on using the oncology protocol but as far as I know formal trials in autoimmunity have generally used a fixed dose.

 

[Gingergrrl]

This is actually the oncology formula rather than the autoimmunity one, and it seems you have had two rather than four doses. That may be fine but I am not aware of that being used as standard in any autoimmune disease. Haematologists have tended to go on using the oncology protocol but as far as I know formal trials in autoimmunity have generally used a fixed dose.

Yes, I have had two doses, and not four doses, and apologize if anything that I wrote was unclear. My doctor referred to the 375 mg/BSA formula as the autoimmune protocol (vs. the ME/CFS protocol in the Fluge and Mella study in which every patient gets one gram regardless of BSA). We did not discuss the oncology protocol, since I do not have cancer, but I get my IVIG and Ritux at an infusion center that is a cancer center. They are very knowledgeable and administer Ritux very frequently plus they are knowledgeable re: the changes that we made with pre-meds (no steroids) and the slower infusion speed b/c I also have MCAS.

 

[Little Bluestem]

My experience as ME sick patient is that most want it to be psychological. And maybe they have policies.. we'll see.

Maybe this doctor isn't going to officially list you as an ME patient, but say that you have a B cell/autoimmune/whatever disorder.

 

[Murph]

Hi @Benji . Any update on how you're feeling? I'm hopeful your next remission might begin to arrive at any moment!! 3 to 5 months after a big infusion seems like a plausible time to start feeling better, from what i've heard...

 

[Benji]

Hi @Benji . Any update on how you're feeling? I'm hopeful your next remission might begin to arrive at any moment!! 3 to 5 months after a big infusion seems like a plausible time to start feeling better, from what i've heard...

No improvement yet. Waiting..

I think you are right about 3-5 month to be responding, for the first infusion.
But I am not sure whether that is the case when I have multiple infusions, I suspect my B cells were gone after the first infusion, when I had my first response. And that the B cells have been gone now, in 11 months.
The goal of Fluge and Mella is to keep a prolonged depletion, and the protocol is designed for that.

So, in theory I should have remission now. Why it isn't so, is the million dollar question.
Some responders don't get setbacks, and others do.
I consider myself responder, but there's something else that makes trouble, is my theory.

 

[Benji]

And; Kolibri has more of these side-effects. There are people that responded after the two first infusions, that went away after the third, and they never got the response back, I think it is due to the frequent infusions. I have seen people that stopped after the 4th infusion, and 5 months later than that got response. I suspect if the person took the fifth that would "block" the response. They say both Kolibri and Fluge/Mella have later response than expected. Maybe it is because of infusions are hard to tolerate? I am wildly guessing, though.

I am very skeptical about having another infusion now, even if I should after the protocol. I want to wait until I have the response back, and let myself have som good months. I use rituximab to be better, not worse. I live by myself in an apartment and don't want to jeopardize that.
Fortunately now I have the opportunity to monitor my B cells. Perhaps that will provide information to when I should have the next dose.

 

[Benji]

And, I remember someone saying that ME patients tolerate cyclofosfamid worse that cancer patients.
That Fluge and Mella now are testing out lower doses less frequent, to find a protocol which the patients tolerate, but still is effective.

Also remember that when Fluge and Mella says that they don't recommend using rituximab outside clinical trials, that's mainly because of side effect issues.

 

[Murph]

Just looking again at column 8 of this table, lots of the responders have periods where they have no clinical response.

For example the person in row 8 has a 16 week response, 14 weeks of no response, six weeks of response, , four weeks off and then another 56 weeks of response, 26 weeks of no response, 6 weeks of response.... So some people have some *sizable* gaps in their responses. I would not give up hope!

 

[Benji]

Thanks, @Murph and also for posting the table. I have seen it before but understand now much more, because of your explaining. Wow, the table is really full of information.

I am not giving up hope for rituximab, far from it, but maybe giving up the Fluge & Mella protocol in my case.
I have re-read some of the things here and also from the new doc, and one thing both he and @Jonathan Edwards have mentioned about ritux treatment is the possibility of immunodeficiency. So I will be extremely curious about the blood test results, I think the results come next week. From what I am reading, that could be a possible explanation.

 

[Gingergrrl]

I am not giving up hope for rituximab, far from it

I am glad you are not giving up hope @Benji and will be very interested to learn what your blood tests reveal. Thanks for keeping us posted and best wishes to you.

 

[Benji]

Ok, finally my blood test results came.

No sign of immunodefiency or anything else that could explain the long setbacks. I am fit as a fiddle! hahaha. I'm not.
The B cells were down, so the ritux has been doing its job.

So I will take some time to decide what I'm doing from now on. I am tempted to record my B cells and have another infusion when they start coming back. Instead of following the Fluge and Mella protocol.
Anyway I have come so far in the protocol, the fifth dose separate between phase || and |||.
Soon, in just two weeks, I have been into this for a year. Time flies.

And, the clinic where the new doc is, said no; to do ritux for ME at this point of research.

I hope the next thing I will tell you about; is that my functioning improves/the ritux response come back. We'll see.

 

[Gingergrrl]

No sign of immunodefiency or anything else that could explain the long setbacks.

My doctor said that Ritux usually does not lead to immunodeficiency and my recent IgG subclasses were all normal except that IgG Subclass 1 was actually elevated (but in my case, this is b/c I have been doing high dose IVIG so I have an added variable to confound everything)!

The B cells were down, so the ritux has been doing its job.

Were your B cells still at zero? Mine are still at zero from the first two infusions but not as much time has passed in my case. My first maintenance infusion of Ritux (the 3-month one) should be the beginning of Nov.

So I will take some time to decide what I'm doing from now on. I am tempted to record my B cells and have another infusion when they start coming back. Instead of following the Fluge and Mella protocol.

Don't the doctors at Kolibri tell you when it is time for the infusion based on a set schedule and/or your B cells (or do they some how leave this up to the patient)? I feel lucky that my doctor is closely monitoring and will decide when it is the right time for my next infusion (although it could get delayed if we have to battle with my insurance).

I hope the next thing I will tell you about; is that my functioning improves

I hope so, too, @Benji and look forward to hearing great news from you in the future.

 

[Benji]

Were your B cells still at zero? Mine are still at zero from the first two infusions but not as much time has passed in my case. My first maintenance infusion of Ritux (the 3-month one) should be the beginning of Nov.

Don't the doctors at Kolibri tell you when it is time for the infusion based on a set schedule and/or your B cells (or do they some how leave this up to the patient)? I feel lucky that my doctor is closely monitoring and will decide when it is the right time for my next infusion (although it could get delayed if we have to battle with my insurance)
, @Benji and look forward to hearing great news from you in the future.

It took me a little while to check the results. Yes they are still at zero!

Kolibri follows the phase ||| study protocol.
When I am deviating, | had to find someone else help me with B cell counts. I guess I could have done that on Kolibri as well, but I live way to far from Kolibri for doing blood tests apart from the infusions.

 

[neweimear]

Just looking again at column 8 of this table, lots of the responders have periods where they have no clinical response.

For example the person in row 8 has a 16 week response, 14 weeks of no response, six weeks of response, , four weeks off and then another 56 weeks of response, 26 weeks of no response, 6 weeks of response.... So some people have some *sizable* gaps in their responses. I would not give up hope!

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Am I reading it correctly that some did not get a response until well over one year, person in last row?? There is someone else who did not get a response until over 90 weeks? Am I reading it right? What a surprise for these people to get a response at such a late stage

 

[Benji]

Am I reading it correctly that some did not get a response until well over one year, person in last row?? There is someone else who did not get a response until over 90 weeks? Am I reading it right? What a surprise for these people to get a response at such a late stage

I think you are reading it right.
And I see the same in the Kolibri groups. People are responding, after a year of difficulties and worsening.

 

[neweimear]

How are you now Benji?

 

[Benji]

I am still mostly housebound, and still need to rest 22 hours per day. Hope for better days to come. It s uplifting hearing the late responders.

 

[Learner1]

@Benji Thank you so much for sharing your story. I have learned so much from you and @Gingergrrl. Rituximab may be in my future and it is very helpful to know what you've been through and the questions to ask.

I am hoping that you start to turn the corner and start to feel better soon.

 

[neweimear]

@Benji you sound similar to me, mostly housebound too...we will keep hoping x