Started Rituximab at OMI/Center for Complex Diseases

[bdonovan]

Yesterday I had my first infusion and I take it again early January (about 2 weeks from my first dose). So far, it's gone fairly smoothly. No allergic response to the infusion. The only negative aspect was felt very cold from the saline infusion; was not prepared for how uncomfortable that was going to be; will be more prepared next time. Otherwise, just used my iPad during the 5 hours and slept during much of it because of the benadryl they give to protect against allergic response.

I understand most don't feel anything for 1-2 weeks and usually by 6 weeks and so far from me nothing yet.

Yes I heard about the Oslo results but I will wait to hear more details; Chronic Fatigue comes in many forms and it's possible that some respond and other's don't. I will post again on this thread with updates.

Welcome any input from those who've been on Rituxan.

 

[Jesse2233]

Good luck!

What were your antibodies labs like?

 

[Gingergrrl]

Otherwise, just used my iPad during the 5 hours and slept during much of it because of the benadryl they give to protect against allergic response.

Thank you so much for sharing your experience and I am also doing Rituximab. I've had three infusions so far and my fourth will be end of Jan/early Feb. I was curious, what was your dose of Ritux? Did you follow the autoimmune formula based on body surface area or get the standard 1000 mg? I am amazed at those who can tolerate a fast infusion speed and mine took about 8-9 hours without any additional saline (b/c of other issues that have nothing to do with the Ritux).

Chronic Fatigue comes in many forms and it's possible that some respond and other's don't. I will post again on this thread with updates.

I agree that there is a group of people who are either a sub-group of ME/CFS, or a misdiagnosed group, who are responders. I am definitely in that group so far.

What were your antibodies labs like?

I had the same question as Jesse and was curious if you test positive for autoantibodies and if so, which ones? Best wishes to you with your treatment.

 

[bdonovan]

Good luck!

What were your antibodies labs like?

Thanks. Here are some of my test results:

anti-Muscarinic Cholinergic Receptor 4 - Antibodies 29.7 (>>7 = positive)
Anti a1- adrenergic Antibodies 16.2 (>>7 = positive)

More recently, regarding auto-immune, my Cunningham panel results showed elevated levels for: Anti-Tubulin, Anti-Dopamine D1 and Anti-Dopamine D2L.

Some other results:
Rheumatoid Factor (IGG) 7 (<=6 )
Mycoplasma Pneumonaie Antibody 2.2 (<=0.9 )
Varicella Zoster (IGG) 4.69 (<=0.9
Varicella Zoster (IGM 0.98 (<=0.9)
Immuniglobin - Subclass 4 123.6 (4-86)
ebv early antigen d ab (igg) 2.19 (<=1.09)
ebv nuclear ag (ebna) ab 1.7 (<=1.09)
lyme disease - 41 kd igg reactive
hsv 1 igg index 0.99 (<=.90)

 

[bdonovan]

Thank you so much for sharing your experience and I am also doing Rituximab. I've had three infusions so far and my fourth will be end of Jan/early Feb. I was curious, what was your dose of Ritux? Did you follow the autoimmune formula based on body surface area or get the standard 1000 mg? I am amazed at those who can tolerate a fast infusion speed and mine took about 8-9 hours without any additional saline (b/c of other issues that have nothing to do with the Ritux).



I agree that there is a group of people who are either a sub-group of ME/CFS, or a misdiagnosed group, who are responders. I am definitely in that group so far.



I had the same question as Jesse and was curious if you test positive for autoantibodies and if so, which ones? Best wishes to you with your treatment.

Hi Gingergrrl,

I got the standard 1000 mg infused in 500 ml of saline (and a total of 1.5 liters of saline). That's interesting; I'm not familiar with the body surface area option.

Re: Antibodies- see above, I posted my results.

Re:
>I agree that there is a group of people who are either a sub-group of ME/CFS, or a misdiagnosed group, who are responders. I am definitely in that group so far.

That's great to hear. Interested in knowing how you responded to the treatment. I think Center for Complex Diseases wanted to exhaust other treatment options before Rituxan given the potential for side effects, and that was my bias too (even though Rituxan is considerably safer for chronic fatigue patients than in conditions which weaken the immune system or for which treatment for that condition weakens the immune system). So I've been seen since end of 2016 but have been taking different medicines (anti-biotics, anti-virals, etc.) for a while and now finally taking Rituxan. Did you have any negative side-effects from Rituxan? It's been just over 24 hours and nothing too discernable for me; I had a craving for peanut butter for some reason today, but no idea if that is Rituxan-related for my just wanting peanut butter and blaming Rituxan lol.

 

[Gingergrrl]

I got the standard 1000 mg infused in 500 ml of saline (and a total of 1.5 liters of saline). That's interesting; I'm not familiar with the body surface area option.

There is a formula for autoimmune dosing that I believe is 375 mg/BSA (but am writing this from memory without checking and I feel like some part of the formula is squared and I am leaving that out). But it basically figures out your dose based on your total body surface area. In my case, this was 600 mg of Ritux (vs. the higher dose of 1000 mg). My doctor is also at CFCD but I am doing the treatment at a local infusion center w/my other doctor.

Re: Antibodies- see above, I posted my results.

Thanks! Have you done any testing of paraneoplastic autoantibodies through Mayo Clinic's Lab (or elsewhere)?

I think Center for Complex Diseases wanted to exhaust other treatment options before Rituxan

I agree and I did a full year of IVIG prior to Ritux (and now 1.5 yrs of IVIG that has run concurrent with Ritux). My doc believes this is why I responded quicker b/c the auto-antibodies were already at a very low level from the IVIG. Did you also do IVIG first?

Did you have any negative side-effects from Rituxan?

I had absolutely no negative side effects from Ritux and it was much easier to tolerate than IVIG which can take me approx 2-4 days to recover from my 3-day IVIG cycle.

Can I ask what your main symptoms are of your illness since we are all so different?

I had a craving for peanut butter for some reason today, but no idea if that is Rituxan-related for my just wanting peanut butter and blaming Rituxan lol.

My guess is that the peanut butter craving was unrelated to the Ritux LOL

 

[Jesse2233]

Wow @bdonovan we have almost the same autoantibodies, will be interested to see your results

 

[Gijs]

Did you also have POTS symptoms? Good luck!

 

[jpcv]

Did you do a panel of aoutoantibodies or just some specific ones?

 

[Diwi9]

@bdonovan - Good luck with your treatment, I hope you are a responder. The Center for Complex Diseases doesn't just hand Rituxan out, they definitely screen for candidate responders by trying everything else and look for signs of autoimmunity. Are you also doing IVIG?

 

[geraldt52]

Surely Mella and Fluge screened for autoantibodies and the results are known? I would think that they know if there was any relationship between those test results and the results of their trial, so is that not published?

 

[Gingergrrl]

@bdonovan - Good luck with your treatment, I hope you are a responder. The Center for Complex Diseases doesn't just hand Rituxan out, they definitely screen for candidate responders by trying everything else and look for signs of autoimmunity.

Well said and this was exactly my experience.

 

[bdonovan]

Thanks! Have you done any testing of paraneoplastic autoantibodies through Mayo Clinic's Lab (or elsewhere)?

...

Did you also do IVIG first?

...

Can I ask what your main symptoms are of your illness since we are all so different?

I didn't have my paraneoplastic autoantibodies tested? Did you find that test useful in your case?

IVIG: it was never brought up. Not sure why.

My symptoms are mainly exertion intolerance- whether physical or cognitive. Physically, I'm not able to walk more than a few blocks though I used to be very active before, playing different sports and weight lifting. I have particular muscle stiffness and dull pain in my forearms and quadriceps. For some reason, I really cannot do anything with my quads like walking up stairs. Whenever I overexert, in addition to feeling extreme fatigue, I also feel it my gut. I have other symptoms though I'm not sure if they are part of CFS. For example, I find driving or being in a car for extended times fairly difficult and exhausting. My muscles also remain tense. I get massages to help with this which has been a life-saver. I have various digestive symptoms which may be related (disturbed gut function from CFS) that I'm treating with Desipramine, Creon, and Carafate -- which were prescribed by my Gastro doctor.

 

[bdonovan]

Did you also have POTS symptoms? Good luck!

I don't have that particular symptom. And thanks, hoping for the best.

 

[bdonovan]

Did you do a panel of aoutoantibodies or just some specific ones?

Like many, I've had so many tests I lose track. I just record the ones I'm positive for, which were the ones I listed.

 

[bdonovan]

@bdonovan - Good luck with your treatment, I hope you are a responder. The Center for Complex Diseases doesn't just hand Rituxan out, they definitely screen for candidate responders by trying everything else and look for signs of autoimmunity. Are you also doing IVIG?

I'm not familiar with IVIG. I seem to recall reading a few accounts of it here but my doctor never brought it up.

Thanks I hope so too!

 

[Gingergrrl]

I didn't have my paraneoplastic autoantibodies tested? Did you find that test useful in your case?

@bdonovan It was extremely helpful in my case and was literally the moment in time that my doctor changed how my case was conceptualized. It went from "ME/CFS" to wait a minute, this might not be ME/CFS and lets continue testing for autoantibodies as the source of the POTS/Dysautonomia, breathing weakness, and muscle weakness. It led me to join a group of people worldwide who have my CA+ Channel Autoantibody and see what symptoms we all shared even though we had very different diagnoses, and often no diagnosis. It was also taken seriously b/c that auto-antibody correlates with small cell lung cancer and requires periodic lung cat scans.

IVIG: it was never brought up. Not sure why.

I don't know the answer but in my case, my doctor felt if I was a responder to high dose IVIG (which I was and still am), then it was a good clinical indictor that I might be a responder to Rituximab. I did a full year of IVIG prior to starting Rituximab and have now done 1.5 yrs of IVIG.

My symptoms are mainly exertion intolerance- whether physical or cognitive. Physically, I'm not able to walk more than a few blocks though I used to be very active before, playing different sports and weight lifting. I have particular muscle stiffness and dull pain in my forearms and quadriceps. For some reason, I really cannot do anything with my quads like walking up stairs. Whenever I overexert, in addition to feeling extreme fatigue, I also feel it my gut. I have other symptoms though I'm not sure if they are part of CFS. For example, I find driving or being in a car for extended times fairly difficult and exhausting. My muscles also remain tense. I get massages to help with this which has been a life-saver. I have various digestive symptoms which may be related (disturbed gut function from CFS) that I'm treating with Desipramine, Creon, and Carafate -- which were prescribed by my Gastro doctor.

Your symptoms are totally different than mine and I have never experienced cognitive exertion. My physical problems were from POTS, shortness of breath, and muscle weakness which were all getting progressively worse prior to treatment. I can now walk in short segments without wheelchair but am nowhere close to being able to walk a full block at one time and still cannot climb more than two stairs. Yet I do not feel "fatigue" as a general symptom, although I can feel muscle fatigue, especially in my arms. Digestive symptoms were a huge part of my illness when my MCAS and allergic reactions were severe but are non-existent at present.

I don't have that particular symptom.

I think the absence of POTS makes your case totally different from mine. I find that those with POTS are much more similar to me overall than those without it. I am in the camp that there are several different illnesses represented on this board and we do not all have the same thing (different triggers, different symptoms, different co-morbidities, different treatments, etc) yet many of us are extremely disabled in our functional ability and the illness robbed us of our prior lives.

 

[bdonovan]

I am just over a week in. So far, so major changes.

I have however felt somewhat increased:
*Sleepiness & grogginess (feel from wake till about 4 PM)
*Some shortness of breath first few days; less now
*Tension in muscles

The tension in my muscles is more than usual. No idea if it's connected to Rituxan.

CFCD doesn't seem too concerned about symptoms. I wonder if the sleepiness is related to my taking ambien; as my CFS got worse about 2 years ago, i started Ambien. Perhaps with a less hyperactive immune system, I may not need it anymore. Will test and see.

Anyone had any of these symptoms on having Rituxan.

 

[Gingergrrl]

I have however felt somewhat increased:
*Sleepiness & grogginess (feel from wake till about 4 PM)
*Some shortness of breath first few days; less now
*Tension in muscles

The tension in my muscles is more than usual. No idea if it's connected to Rituxan.

Anyone had any of these symptoms on having Rituxan.

I did not have any of these side effects from Rituximab. Shortness of breath (SOB) was one of my very worst symptoms for 3+ years which has greatly improved since doing Rituximab.

CFCD doesn't seem too concerned about symptoms. I wonder if the sleepiness is related to my taking ambien; as my CFS got worse about 2 years ago, i started Ambien. Perhaps with a less hyperactive immune system, I may not need it anymore. Will test and see.

I do not know but I would ask Dr. K or Dr. C (not sure which one you see at CFCD) re: the Ambien and would imagine it could be making you feel sleepy or groggy. Also, if you had IV Benadryl or taking allergy meds post-Rituximab, that could make you very sleepy.

 

[ivorin]

Wow @bdonovan we have almost the same autoantibodies, will be interested to see your results

I have almost the same ones as both of you. Starting RTX in 2 weeks.