Has anyone visiting OMI (Kogelnik, Kaufman) and taking Rituximab had any significant recovery??

[Gingergrrl]

@funkyqueen sorry have not read other links but are you saying that low NK functioning and vasopressin is what made you a candidate for Rituxan? I am not considering this but was just curious?


@Gingergrrl : My NK function was very low ( 6) too, and , like you too, my ADH ( vasopressin) level was so low, it was undectable too[/QUOTE]

 

[funkyqueen]

@funkyqueen sorry have not read other links but are you saying that low NK functioning and vasopressin is what made you a candidate for Rituxan? I am not considering this but was just curious?


@Gingergrrl : My NK function was very low ( 6) too, and , like you too, my ADH ( vasopressin) level was so low, it was undectable too

[/QUOTE]

Hi @Gingergrrl , no, lol, i'm not meaning anything ;-) I think its a little more complex thant that.. I just found interesting the fact your level of vasopressin is undectable like me, and your NK function is very low like me ( and for this last data, a low/very low NK function its one of very prevalent biomarkers they found iN PWME, according to Dr Kaufman)

For the rest, I do not know on what basis Dr. Ko. and Dr. Ka. about who is right candidate or not for Rituxan.

 

[IreneF]

Does anyone know what criteria the Norwegians use? Biomarkers, age, length of illness, severity?

 

[nandixon]

@funkyqueen

What was the timing for the 4 rituximab infusions you've had so far? I guess the first two were probably 2 weeks apart(?), but when were the third and fourth infusions given?

And was each infusion done with 1 gram (1000 mg) of rituximab?

Thanks and best wishes for continued success!

 

[deleder2k]

Does anyone know what criteria the Norwegians use? Biomarkers, age, length of illness, severity?

https://clinicaltrials.gov/ct2/show/NCT02229942?term=rituximab+myalgic&rank=1

Eligibility

Ages Eligible for Study: 18 Years to 65 Years
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Criteria
Inclusion Criteria:

• Patients with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME) according to Canadian diagnostic criteria (Carruthers, 2003)
• Duration of CFS/ME disease 2-15 years. For patients with mild CFS/ME duration of disease must be 5-15 years.
• Mild, Mild/Moderate, Moderate, Moderate/Severe and Severe CFS/ME may be included
• Signed informed consent

Exclusion Criteria:

• Patients with fatigue, who do not comply with Canadian diagnostic criteria (2003)
• Duration of CFS/ME < 2 years or >15 years
• Patients with very severe CFS/ME
• Pregnancy or lactation.
• Previous malignant disease (except basal cell carcinoma in skin or uterine cervical dysplasia)
• Previous treatment with B-lymphocyte depleting therapeutic monoclonal antibodies, such as rituximab
• Previous long-term systemic immunosuppressive treatment, including drugs such as cyclosporine, azathioprine, mycophenolate mofetil, but except steroid treatment e.g. for obstructive lung disease or for other autoimmune diseases such as ulcerative colitis
• Severe endogenous depression
• Lack of ability to adhere to protocol
• Known multi-allergy with clinically assessed risk from rituximab infusion
• Reduced kidney function (serum creatinine > 1,5x upper normal level)
• Reduced liver function (serum bilirubin or transaminases > 1,5x upper normal level)
• Known HIV positivity, previous hepatitis B or hepatitis C
• Evidence of ongoing, active and clinically relevant infection
• Known immunodeficiency with risk from therapeutic B-cell depletion, such as hypogammaglobulinemia

 

[Gingergrrl]

Hi @Gingergrrl , no, lol, i'm not meaning anything ;-) I think its a little more complex thant that.. I just found interesting the fact your level of vasopressin is undectable like me, and your NK function is very low like me ( and for this last data, a low/very low NK function its one of very prevalent biomarkers they found iN PWME, according to Dr Kaufman)

For the rest, I do not know on what basis Dr. Ko. and Dr. Ka. about who is right candidate or not for Rituxan.

I learned this week from seeing an MCAS and a mold/biotoxin specialist that undetectable vasopressin, re-activation of viruses and screwed up NK functioning are very common in all three conditions and the overlap is amazing.

 

[funkyqueen]

@funkyqueen

What was the timing for the 4 rituximab infusions you've had so far? I guess the first two were probably 2 weeks apart(?), but when were the third and fourth infusions given?

And was each infusion done with 1 gram (1000 mg) of rituximab?

Thanks and best wishes for continued success!

Yes, you guess wright for the 1rst ones. And then, the 3rd was at W+12, and the 4th at W+24. ( And then, the 5th will be at W+40, and finally, the last at w+60). Yes , one gram for each infusions. It seems to be the same protocole as Norway...
@deleder2k , what do you think about that ?

I learned this week from seeing an MCAS and a mold/biotoxin specialist that undetectable vasopressin, re-activation of viruses and screwed up NK functioning are very common in all three conditions and the overlap is amazing.

Sorry i'm not sure to understand what you mean about " the 3 conditions" ? Can you please explain me , @Gingergrrl ?

 

[deleder2k]

The dosing regime used in Norwegian studies:

Drug: Rituximab
Induction with two infusions two weeks apart, rituximab 500 mg/m2 (max 1000 mg).

Maintenance with rituximab infusions (500 mg fixed dose) at 3, 6, 9 and 12 months.

Other Names:

• Rituxan
• Mabthera

That means a max of 1g for a man that is 185 cm 80 kg / 6 ft 1 inch 175 pounds the first 2 rounds. Slightly less if one is lighter and lower.

From infusion 3 and onwards: 500mg fixed each time

 

[funkyqueen]

Thanks for your answer, @deleder2k
Are these data are those formal from Phase II or III of Norway ?

I know in France, for R.A. for exemple, the dose is 375mg/m² of skin...
So i have more or exactly the same as a man of 185cm /80kg ...lol ... At each infusion... :-s
Well, i trust in my Dr so...wait & see

And it seem the protocol is not exactly the same as Norway, but, it look like very a lot

 

[Gingergrrl]

Sorry i'm not sure to understand what you mean about " the 3 conditions" ? Can you please explain me , @Gingergrrl ?

Sorry I meant ME/CFS, MCAS, and mycotoxin (mold) illness. All share a great deal of overlap as far as some of the abnormal test results per the doctors I have seen this week.

 

[deleder2k]

@funkyqueen, they used the same amount of RTX in both Phase II and III.

 

[hardatwork]

Sorry I meant ME/CFS, MCAS, and mycotoxin (mold) illness. All share a great deal of overlap as far as some of the abnormal test results per the doctors I have seen this week.

Can you please tell me which doctor you saw for MCAS? I'm trying to figure out if i have ME/CFS or MCAS or both.

 

[Gingergrrl]

Can you please tell me which doctor you saw for MCAS? I'm trying to figure out if i have ME/CFS or MCAS or both.

@hardatwork Will send you a PM with the info

 

[aquariusgirl]

Hi pls Pm me too @Gingergrrl tnx

 

[Gingergrrl]

Hi pls Pm me too @Gingergrrl tnx

@aquariusgirl No problem and will PM you shortly. I decided several months ago not to post my new doctors names on-line even though I was doing this when I first joined PR. Am happy to share it by PM though.

 

[sparklehoof]

Sorry let me try to explain how I was thinking... I came up with the approx total of $40k using the latest info about OMI costs (see above) from PR and thinking you would probably need 4 total infusions to see if things are working using Fluge/Mella timing, 1gm start, 1gm week 2, 500mg month 3, 500mg month 6. I believe the $6800 is for 1gm here in the U.S not for 2gm.

You are right $40k is probably a bit high but not far off, remember there are a lot of costs beyond just the drug itself.

I would be glad to hear from people who went through it to tell us exactly how much it cost for them at OMI.

I called Medicare to learn if Rituximab is covered. My hematologist's office told me that it usually is, but Medicare said that they can't release that info. To pts. (This seemed odd since they offer a formulary, though Rituximab isn't listed). Perhaps it's only covered for certain diagnosis?

 

[ebethc]

I got a short remission from Ritux. Not worth $40k. I'm getting better results from Montoya's Valcyte and anti-inflammatory combo, but it's taken about a year.

Not that I regret the Ritux treatment, or feel that OMI led me on or was deceptive in any way.

which anti-inflammatory are you on? do you have CMV and/or HHV-6?

 

[IreneF]

which anti-inflammatory are you on? do you have CMV and/or HHV-6?

My meds have changed. I was taking Plaquenil and colchicine; now just colchicine. I was compelled to stop the Valcyte because my insurance co. won't pay for it. Now I'm on Famvir. I don't think it's doing any good; I was better off on the Valcyte.

I have antibodies to HHV-6 but I am not convinced that it is the cause of my symptoms.

 

[ebethc]

My meds have changed. I was taking Plaquenil and colchicine; now just colchicine. I was compelled to stop the Valcyte because my insurance co. won't pay for it. Now I'm on Famvir. I don't think it's doing any good; I was better off on the Valcyte.

I have antibodies to HHV-6 but I am not convinced that it is the cause of my symptoms.

Sorry to hear about the valcyte/insurance problems... valcyte is supposed to be good for calming microlgial inflammation in the brain, and therefore, clearing brain fog, and neuro problems.

 

[IreneF]

Sorry to hear about the valcyte/insurance problems... valcyte is supposed to be good for calming microlgial inflammation in the brain, and therefore, clearing brain fog, and neuro problems.

Yes, if I didn't have to pay for medical insurance I could afford Valcyte.