My ritux experience so far

[Murph]

Here's more graphs of rituximab responses. (from the 2011 study, which featured one infusion and 12 months of follow up.) They sure do vary!

"The scales on Y-axes were 0–6
(0: Major worsening;
1: Moderate worsening;
2: Slight worsening;
3: No change;
4: Slight improvement;
5: Moderate improvement;
6: Major improvement).
Also shown are the B-cell numbers from immunophenotyping of peripheral blood mononuclear cells during follow-up (×106/L)"

 

[Benji]

@Gingergrrl
I sure get some new perspectives and views here! Thank you for describing openly your treatment. I will have a lot to think about and consider now.
I'm not going thoroughly into into now.
I am soon going on vacation with my kids. And a person to help us. I hope it goes ok when not having had my response back. Probably it will be fine still. It's a a resort we've been to before, with all inclusive and swimming pool. Quite small, not long distances. In Southern Europe.

But something I did check, unsure after reading your answer.
For RA in Norway it is fixed infusions at 1000mg, but for other diseases it is your protocol with 375mg/BSA. Interesting.
And the phase iI trial Fluge/Mella , here it is:

"The patients were given rituximab infusions in the outpatient clinic at Department of Oncology, Haukeland University Hospital. The induction treatment, rituximab 500 mg/m2 (maximum 1000 mg), diluted in saline to a concentration of 2 mg/ml, was administered twice with two weeks interval, with nurse surveillance and according to local guidelines. The patients then received rituximab maintenance infusions, 500 mg/m2 (maximum 1000 mg) at 3, 6, 10 and 15 months follow-up. All patients were given oral cetirizine 10 mg, paracetamol 1 g, and dexamethasone 8 mg prior to infusion. The two pilot patients received only one rituximab induction infusion, with the sixth (last) infusion at 18 and 19 months (instead of 15 months) respectively."
I know one of the pilotpatiemt is still recovered.

What else? I hope you are still doing good!


@Murph Thanks a lot. Some of it was new to me.
My last infusion was late may. Of course I will be updating, this is an exciting journey.

 

[Gingergrrl]

For RA in Norway it is fixed infusions at 1000mg, but for other diseases it is your protocol with 375mg/BSA. Interesting.

That was my understanding as well (that the autoimmune protocol always used the 375 mg/BSA formula that I used). My doctor felt that 1000 mg would be a very high dose for me and would also require extra saline/fluid which would make it harder for me to tolerate. He said total B cell depletion is the goal and I reached that from the first infusion so my dose was definitely enough.

I am soon going on vacation with my kids.

I am glad that you will be able to do this and hope you have a fun (and restful!) trip.

What else? I hope you are still doing good!

I am doing well and my next IVIG cycle is at the end of this week. This is now my 13th month of IVIG and the plan is to keep the auto-antibodies as low as possible with IVIG and now with the B cells dead, they cannot re-stock them with new auto-antibodies . So if my illness is mostly auto-antibody mediated, as we believe it is, this could bring about remission to my most intractable symptoms. And if not, I have no regrets for trying it.

 

[Benji]

I am back from my holiday, wonderful to be among my children in the warmt of Southern Europe. The trip went well, I had some days/half days in bed, but was able to have some baths in the pool also. Good food, and people who cleaned our room; and others that entertained the kids. Wonderful, I want to go back!
But now the school starts for the kids. And I am no better. Waiting... but after the vacation I am in a good mood and can wait for a while. In a week it will be three months since the last infusion.
I have got an appointment with a private doctor who knows mabthera, nearby where I live. In almost two weeks from now. Curious of what he will think of my "journey" and what he will recommend.

 

[Benji]

So; after advice here about having a doctor which follows up with blood tests; I have seen a private rheumathologist nearby, i e 15 minutes drive. I am lucky to live in a central area of Norway.

I told him what I have told here; and guess what he said....we have to do some blood tests.

So that's what next. Uh, they had to be in the morning, before 10-11, and in Oslo, the capital of Norway, that's a bit further away. We'll see when I manage.

And perhaps I don't have to go to Kolibri anymore, that he can take on my treatment.

 

[neweimear]

Good luck Benji, have you had any improvement since? Are u still due another rituximab infusion? I hope you see some benefit.

 

[Benji]

Thanks.

No I am still in bad shape, 3 months after the last infusion. I am so sick of being sick. But i guess I am not alone with that feeling.

 

[neweimear]

Sorry Benji, that is so disappointing. Hopefully there are better days ahead.

 

[Gingergrrl]

And perhaps I don't have to go to Kolibri anymore, that he can take on my treatment.

Do you mean the private rheumatologist can monitor your B cells/blood work and will be able to prescribe your Rituximab without having to travel to Kolibri?

No I am still in bad shape, 3 months after the last infusion.

I am so sorry to hear that. Will your next maintenance infusion be at six months (or does this depend on your blood test results and what your new doctor advises)?

 

[Benji]

Do you mean the private rheumatologist can monitor your B cells/blood work and will be able to prescribe your Rituximab without having to travel to Kolibri)?

Yes I think so. Measuring the B cells (and T cells maybe) is what we are going to do now. The clinic he is a part of do not offer ritux to ME patients, but there might be a possibility that they can do it for me. We'll talk about that when the blood test result is ready; and I come back to see him.

 

[Gingergrrl]

Yes I think so. Measuring the B cells (and T cells maybe) is what we are going to do now. The clinic he is a part of do not offer ritux to ME patients, but there might be a possibility that they can do it for me. We'll talk about that when the blood test result is ready; and I come back to see him.

That would be great @Benji and I am hoping that this new doctor will be able to treat you and properly monitor your B cells and all of your blood test results. Keep us posted!

 

[Benji]

That would be great @Benji and I am hoping that this new doctor will be able to treat you and properly monitor your B cells and all of your blood test results. Keep us posted!

I certainly hope so. It would be fantastic if he could. Some travels to California to get it and I maybe get it so near home? Wow.
But don't know whether I should get my hopes up. My experience as ME sick patient is that most want it to be psychological. And maybe they have policies.. we'll see. But I suspect rheumatology is as close as we get to our desease, nowadays.

And it would be so great not having to try be on top of everything; but maybe leave some matters like dose questions to someone who is competent, which I believe this doctor is.

I also repost a quote one of my posts in your thread, which I think is informative about Fluge, Mella and Øgreid at Kolibri. In case anyone interested should read, perhaps even the new doc.

Kolibri is driven by someone else, entirely.
Bergen, where Fluge and Mella is situated, is also at the west coast of Norway, but further north, 3 hours, but with the fjords, it would take 6 hours? to drive.

Drs Fluge and Mella are not very happy about Kolibri; they think it is too early to give rituximab outside clinical trials. But they understand patients that won't wait; and they have also said that Dr. Øgreid at Kolibri is a competent doctor who studied under? Drs Fluge and/or Mella. All three are oncologists.
Also Dr Øgreid at Kolibri was in the newspaper lately, about giving a new form of cancer diagnostics, which the government not yet uses. So ritux isn't the only thing he is doing before everyone else.

 

[neweimear]

@Benji just wondering why people from Norway would travel to California if they can get ritux in Kolibri? Is it because they think they will get better care in California? Just curious as it is a long way to travel....

 

[Benji]

@Benji just wondering why people from Norway would travel to California if they can get ritux in Kolibri? Is it because they think they will get better care in California? Just curious as it is a long way to travel....

Sorry, that remark was about someone I know that went off to California, before Kolibri started. In some years California was the only option. Of course now all go to Kolibri. I don't have any indications that Kolibri is worse than OMI.

 

[neweimear]

Thanks Benji!! You are great for answering...

 

[Benji]

Thanks. I would like to be great at more than anwsering, and hope ritux will provide me with the ability to so so.
In the meantime I am glad to share what I think or have experienced.

 

[Benji]

I am a bit puzzled by the moving around of doses @Benji. There is actually not a lot of point in having rituximab if your B cell count is still low, unless there is a pre-planned programme designed to keep b cell counts below a certain level. There is no much point in changing doses and timings in that case.

Isn't that exactly what Drs Fluge and Mella are doing?
A preplanned programme to keep B cell counts below a certain level? Or zero?

But I wonder why they went for that, Instead of trying existing protocols for other autoimmune diseases.

I remember reading from the Norwegian "felleskatalog" book for how medicines are used, that for RA there was the two initial infusions, and if it worked, then repeat at 24 weeks. (Very expensive) Not before, it was wise to wait that long.
If I had followed that, maybe I wouldn't have the long setbacks? But then again, my experience is not the usual one, from the study, so we couldn't know.

I like math/physics. And trying to find the pattern. The first initial doses gave me a bad period of two months. The next infusion gave me a bad period of 4 months. And what to expect now? It is a linear correlation, then its 2,4,6,... that means 6 months bad period. Or it is a exponential one, i e 2,4,8... haha that would means 8 months duration this time. I am 3 months into it at this point.

I am sorry that I edit all the time here, finished now!

 

[Benji]

I am re-reading the thread now and find more things that I wonder about

I agree that the trial protocol for ME/CFS should not be attempted by random doctors who have no experience with it and do not even monitor the patient's B cells (which shocked me to be honest when I read that)! In my case, we are doing it for auto-immunity and following the autoimmune protocol which is a much lower dose than given in the trialm.

I understand that the autoimmune protocol is a lower dose than given in the trials, but I am surprised if the autoimmune protocol have an infusion after 3 months. I thought that the intervals of doses was minimum 24 weeks apart for using auto-immune protocol. Perhaps @Jonathan Edwards can comment?

Edit: My trouble started at the third infusion. Maybe if I hadn't done an infusion on 3'th. month, I would not have setbacks? This maybe a theory, other than the difference in premedication steroids. But only for me? Because the people in the face || study tolerated it. So confusing.

Edit once more: I tolerate medicines quite good I think. So for me to be very fragile compared to others, its a new experience, it is usually the opposite.
But without any blood test or following up, I guess there are a lot of unknown factors, which can mess things up. I shall get that in progress as soon as possible.

 

[Gingergrrl]

I understand that the autoimmune protocol is a lower dose than given in the trials, but I am surprised if the autoimmune protocol have an infusion after 3 months. I thought that the intervals of doses was minimum 24 weeks apart for using auto-immune protocol.

There are a few autoimmune protocols based on which illness (per my doctor) for example the Myasthenia Gravis protocol is to give Rituximab once a week for 4 wks at the beginning (which is not what I did). I did the autoimmune protocol of Ritux on days Zero and 14 (two wks apart) and my first maintenance infusion will be at three months which is the beginning of Nov for me.

My doctor used the dosing formula of the autoimmune protocol, b/c I do not tolerate meds and IV fluids well, and he felt that 600 mg was more than enough to kill all of my B cells after the first infusion (and he was correct). He questions if anyone actually needs the 1 gram given in the Fluge & Mella study (but they might and we just don't understand it yet). But for me, he felt the lower autoimmune dose, which is determined by the patient's body surface area, was the safer choice.

Edit: My trouble started at the third infusion. Maybe if I hadn't done an infusion on 3'th. month, I would not have setbacks? This maybe a theory, other than the difference in premedication steroids. But only for me? Because the people in the face || study tolerated it. So confusing.

I truly think that there is no way to predict if any individual will be a responder or have bad side effects, etc. I think you can do everything possible to minimize side effects with the right pre-meds and do the necessary blood work before and after, etc. But even in autoimmune disease, there is no guarantee someone will be a responder. I chose not to do the steroids b/c I know that I do not tolerate them.

Edit once more: I tolerate medicines quite good I think. So for me to be very fragile compared to others, its a new experience, it is usually the opposite.

I am the opposite and have had horrible reactions to both meds and plain IV saline in the past so I was quite shocked by how well I tolerated the Rituximab. I think it was b/c we did a very slow infusion speed and the nurse I worked with knows me for over a year of doing IVIG.

But without any blood test or following up, I guess there are a lot of unknown factors, which can mess things up. I shall get that in progress as soon as possible.

I think testing your B cells etc will be helpful information so you know the status prior to having the next maintenance infusion.

 

[Jonathan Edwards]

My doctor used the dosing formula of the autoimmune protocol, b/c I do not tolerate meds and IV fluids well, and he felt that 600 mg was more than enough to kill all of my B cells after the first infusion (and he was correct). He questions if anyone actually needs the 1 gram given in the Fluge & Mella study (but they might and we just don't understand it yet). But for me, he felt the lower autoimmune dose, which is determined by the patient's body surface area, was the safer choice.

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. The standard dose I developed for autoimmune disease is 1gm twice, one to two weeks apart. This may be more than needed but we have some evidence that 500mg twice is not enough even though the B cell count goes right down.

If dosing is by body surface area it would be 600mg/metre squared - which works out pretty much exactly 1gm actual dose, so is the same as my protocol.

Some autoimmune patients are still treated with the lymphoma protocol, which is 375mg/metre squared four times. That works out at just a bit more than 2gm in all for a lot of people.