Started Rituximab at OMI/Center for Complex Diseases

Gingergrrl

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I have almost the same ones as both of you. Starting RTX in 2 weeks.
Wow, please keep me posted, I really want to follow your journey. I am assuming your insurance from Croatia is not covering this and you will do the Ritux here in CA privately?

Do you have family here with you? Even though I was not allergic, I prepared for the worst and for the very first infusion, I had someone stay with me for 72 hours after Ritux (alternated three people) but I was never alone.

I assume your first two infusions will be two weeks apart (Days zero and 14) but then the next one will be at the three month mark so would you fly home and then back to CA?
 

ivorin

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Wow, please keep me posted, I really want to follow your journey. I am assuming your insurance from Croatia is not covering this and you will do the Ritux here in CA privately?

Do you have family here with you? Even though I was not allergic, I prepared for the worst and for the very first infusion, I had someone stay with me for 72 hours after Ritux (alternated three people) but I was never alone.

I assume your first two infusions will be two weeks apart (Days zero and 14) but then the next one will be at the three month mark so would you fly home and then back to CA?
It's not, but the costs with Genentech's help program don't come out that crazy.

I have my mother with me, I am unable to care for myself for now, so i will definitely have someone with me :)

That's exactly the plan. Hopefully I can make it and nothing bad happens.

I still haven't finalized my decision though, I am scared of using RTX after the trial went negative and what with the story of Olaf Bodden and what happened to him after taking RTX for CFS. I really wish there was more information on who benefits and when, even if Dr. K thinks I am a very good candidate.
 

Gingergrrl

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It's not, but the costs with Genentech's help program don't come out that crazy.
That is good news and I was not sure if you could apply to Genentech if not a US Citizen. If my insurance denies me before I am done, I will be going that route, too.

I have my mother with me, I am unable to care for myself for now, so i will definitely have someone with me :)
I am so glad your mom is with you, that is a relief to hear.

I still haven't finalized my decision though, I am scared of using RTX after the trial went negative and what with the story of Olaf Bodden and what happened to him after taking RTX for CFS. I really wish there was more information on who benefits and when, even if Dr. K thinks I am a very good candidate.
For me the trial being negative was irrelevant b/c I am doing the Ritux for B-cell driven autoimmune disease and not for CFS. I reached the point in 2015 (prior to starting IVIG in 2016 and Ritux in 2017) that I could not breathe, walk, or eat food. I was researching assisted suicide through doctors in my state b/c my life was basically over.

When we discovered the paraneoplastic autoantibodies and that I had an illness similar to LEMS (but not LEMS on an EMG) plus Autoimmune POTS and that IVIG and Ritux could potentially improve my case, even my own mother and husband (at that time) felt the risk was worth dying for and in my case, it has paid off.

My mom has stage 4 cancer now and I was able to walk around hospital today without wheelchair and stayed for seven hours without a single symptom or allergic reaction to anything. The only thing I could not do (because it would trigger a POTS reaction) was bend down to clean up some water that had spilled on the floor so my sister did this. But otherwise, I felt like a normal person all day. But my case may be 100% different than yours. Do you have muscle weakness, breathing weakness or get anaphylaxis? These three were the bane of my existence and they are gone now, even though I still have dysautonomia & POTS.
 
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ivorin

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@Gingergrrl It's beautiful to hear that you made it out of the Hellhole that is existing with these illnesses to a point where you're on the right track to live an actual life, I am very happy for you :)

I do not have those symptoms, but I do have neuropsychiatric issues that Dr. K thinks are autoimmune in nature, so his hope is those would be solved with the therapy. I wish I could have IVIG before, but I can't really afford it or get it out of my insurance so it is either RTX, or hoping for a miracle. I may just try the other therapy he has given me for a few months and try to get SCIG before I take the plunge, I really don't know. These are the types of decisions that you're not really equipped to handle :/
 
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Hey all,

Regret the delay in updates. The main reason for no updates is I haven't noticed much change. I just had my 3rd infusion last week. My fatigue goes up and down (though overall fatigue is significant) just as it was before rituxan. I've been told that many don't feel much until 6 months (although some earlier at 3 months and even earlier)- it all depends. Dr. Chheda mentioned mo 3-6, body is recovering even though immune cells normalized so hoping for the best. One positive note is at times I seem to have more energy in my arms. For 4 years never wanted to lift a dumbbell. And there have been 3 days by body was asking for it- only after the Rituxan. A small indication but I'm hoping it means some more recovery to come.
 

Gingergrrl

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One positive note is at times I seem to have more energy in my arms. For 4 years never wanted to lift a dumbbell. And there have been 3 days by body was asking for it- only after the Rituxan. A small indication but I'm hoping it means some more recovery to come.
That is interesting re: your arms and my arm strength has dramatically increased from IVIG and Rituximab (although I have never had the urge to lift a dumbbell LOL).

Were your arm muscles severely weak (nearly dead and non-functional) like mine prior to treatment?
 

Gingergrrl

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Also @ivorin, I just saw your post above (from Dec) and missed your tag at the time b/c it was only a few days after my mom went into hospital.
Are you still in No. CA and are you still posting? How is your treatment going?
 
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That is interesting re: your arms and my arm strength has dramatically increased from IVIG and Rituximab (although I have never had the urge to lift a dumbbell LOL).

Were your arm muscles severely weak (nearly dead and non-functional) like mine prior to treatment?
I have exertion intolerance; my body would react negatively when I would do anything with my arms, legs, any physical exertion. People would say "well thats normal after you exert yourself or lift". But I've been weight lifting for over 10 years before I got chronic fatigue. I know the difference between after-workout fatigue and what you feel like after exertion with chronic fatigue. They are very different. With the latter, I knew it was a negative thing that would last sometimes days - which was not normal - especially for light lifting. It would give me a pit in my stomach/stomach discomfort, overall body fatigue, and just a feeling like toxins throughout my body.

I guess my muscles just "talked to one day" and said I they needed to be used. I lifted a bit and felt fine afterwards. But it's only happened twice over the 4 months of taxing Rituxan - they were pretty isolated incidents. I'm curious how your improvement took place- was it gradual? Did you have some earlier moments where you had progress but then it receded?

(random question: but did you ever get massages? I often find these help and then other times I find they worsen my symptoms- especially the chronic soreness in my limbs and overall energy).
 

Gingergrrl

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I know the difference between after-workout fatigue and what you feel like after exertion with chronic fatigue. They are very different. With the latter, I knew it was a negative thing that would last sometimes days - which was not normal - especially for light lifting.
It sounds like (and please correct me if I am wrong) you were able to do certain activities involving muscle exertion but knew you would pay a HUGE price in the upcoming days which was totally abnormal compared to your past history of working out and lifting weights?

My case was different in that I had constant muscle weakness, especially in my upper body (arms, neck, lungs) which affected my breathing and my ability to do just about anything with my arms like open a water bottle, turn on faucets in shower, even open my front door or patio door. I just completely lacked muscle strength although it was NEVER as bad in my legs as in my upper body and I do not know why. It was getting so bad that my thyroid doctor said (in 2015) that he was afraid I could end up on a ventilator if it did not plateau which scared the hell out of me.

The muscle weakness has now gone away and I can walk without wheelchair and actually drove my car for the first time today (for about an hour) for the first time since 2014! I can use my arms for all normal activities again (I can open packages, cut vegetables, use a hairdryer again, etc), and I can inhale a full breath down to my diaphragm which I had lost the ability to do. It's like the IVIG & Rituximab have given me back the ability to have normal muscle function (although I do not believe that I will ever be as strong as I was pre-illness when I could carry groceries up three flights of stairs- and I have no expectation of ever reaching that kind of level).

I guess my muscles just "talked to one day" and said I they needed to be used. I lifted a bit and felt fine afterwards. But it's only happened twice over the 4 months of taxing Rituxan - they were pretty isolated incidents.
That is so interesting and I have not experienced that. Even though it has only happened twice so far, do you think it is related to the Ritux?

I'm curious how your improvement took place- was it gradual? Did you have some earlier moments where you had progress but then it receded?
That's a great question and I am really thinking how to explain my answer. My illness had several triggers and the final one was 3 yrs exposure to toxic black mold in prior rental. If we had not moved and gotten rid of all our belongings, I am not sure if I would still be alive today b/c I was having constant anaphylaxis in 2015. So finding the right MCAS meds was the very first step to stop the allergic reactions and then eat (limited) food again.

But I was still extremely ill and could only stand for about 30 seconds without wheelchair. I had no arm strength and required assistance for just about all tasks of daily living. I could not walk, could not open my apt door, could not breath, had severe POTS, etc. I tried many treatments that either did not help or made me worse. It was not until I started high dose IVIG that I noticed things changing.

My MCAS (allergic reactions) went into remission and have not returned in almost two yrs. My overall stamina improved and I was able to do more w/my arms. I had an insane startle reflex that also disappeared. Then my progress seemed to plateau until I began Rituximab (after already doing a full year of IVIG). I noticed after Ritux that things started moving forward again. I had even more arm muscle strength & stamina, and my breathing improved.

And finally more recently, my POTS improved so I can walk without wheelchair (short distances and no stairs) but enough to go out on short errands without the wheelchair which is life-changing. And now today, I drove my car and was able to move the gear shift and parking break with complete ease (and I had lost the ability to do that pre-treatment). I still have POTS and certain motions can trigger an episode but I try to be careful.

These treatments also allowed me to be at hospital every day for almost three months while my mom was dying of cancer (and if she had gotten sick in 2015, I would have had to stay home, and not only could not have helped her, but someone would have had to stay home and help me).

(random question: but did you ever get massages? I often find these help and then other times I find they worsen my symptoms- especially the chronic soreness in my limbs and overall energy).
I do not get massages (only b/c of lack of time and so much else that I need to do) but when I did get them many years ago, I always enjoyed them and found them helpful. I am not sure how they would be now.
 
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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.

Hi Bdonovan,
I am suffering from ME since 2 yrs after acute dengue infection
I would like to discuss and take inputs from you regarding Complex disease center and Rituximab trial and also take your suggestions regarding the possible treatment
 

Gingergrrl

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Hi Bdonovan, I am suffering from ME since 2 yrs after acute dengue infection I would like to discuss and take inputs from you regarding Complex disease center and Rituximab trial and also take your suggestions regarding the possible treatment
I don't think @bdonovan has posted in a few years and in case he doesn't see your question, I wanted to see if I could help. Dengue is an acute mosquito borne infection (unless I am confused? :xeyes:) and you would not ever do a treatment like Rituximab if you had any active infections. Rituximab (outside of cancer treatment) is used in B-cell driven autoimmunity. Have you had any testing done which showed autoimmunity or auto-antibodies?
 
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Th
I don't think @bdonovan has posted in a few years and in case he doesn't see your question, I wanted to see if I could help. Dengue is an acute mosquito borne infection (unless I am confused? :xeyes:) and you would not ever do a treatment like Rituximab if you had any active infections. Rituximab (outside of cancer treatment) is used in B-cell driven autoimmunity. Have you had any testing done which showed autoimmunity or auto-antibodies?
Thanks for your reply and help.
1. I have done ANA profile test(ANTINUCLEAR AB-IFA, HEP2,SERUM ANTINUCLEAR ANTIBODIES) and it is negative.
Do you suggest any other auto immune or auto antibodies test?
2. Also I have done IgM, IgG for dengue, EBV and PCR for dengue, EBV all are negative.
Natural killer count is also normal. Do you suggest any immune system related workup?
3. Also I am trying to ruleout structural issues like CCI/AAI etc.
I am suffering very severely and completely bedbound. Actually I cannot afford to take treatment of Complex Disease Center but I am thinking to stretch my budget if it can really help me. Plz suggest.
My main symptoms are fatigue, PEM, extreme fatigue after eating, dysapnea,Orthostatic intolerance but no pots and no orthostatic hypotension
Also please feel free to invite anyone who can help me with suggestion.
 

Gingergrrl

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Thanks for your reply and help.
No problem and I am happy to help if I can. I was confused from your post if your doctor (if you have a current doctor?) suspects autoimmunity and if they mentioned Rituximab vs. if you chose Rituximab at random as a possible treatment? The people that I know (including myself) who had significant improvement from Rituximab all had either confirmed autoimmune diagnoses or they had multiple confirmed autoantibodies (but no clear autoimmune diagnosis yet).

I have done ANA profile test(ANTINUCLEAR AB-IFA, HEP2,SERUM ANTINUCLEAR ANTIBODIES) and it is negative. Do you suggest any other auto immune or auto antibodies test?
Was your ANA titer ever positive at any point in your illness? There are many autoimmune panels so it is hard for me to suggest which ones might be relevant for you but the ones that were the most useful for me were Mayo Clinic Panels (and your doctor can order the tests and the blood sent to Mayo and you do not have to go there). I don't recommend Mayo for treatment but their lab is excellent, especially for obscure testing that cannot be done at regular labs.

The panels that were the most helpful for me were the Autoimmune Dysautonomia Panel (DYS1... but I think they changed the name now to DYS2) and the Paraneoplastic Autoantibody Panel (PAVAL). The other panel that was helpful was Cell Trend (in Germany) but this panel is not covered by US insurance and many US doctors will dismiss it outright b/c it is not from a US Lab (vs. the Mayo Panels they will take seriously). I also did some other Mayo Panels to rule out certain conditions that I did not have (but we wanted to be certain).

Also I have done IgM, IgG for dengue, EBV and PCR for dengue, EBV all are negative. Natural killer count is also normal. Do you suggest any immune system related workup?
You said that you had Dengue in the past but now you said that the IgG was negative (so it did not show prior antibodies). Do you know for sure that you had Dengue? I do not know anything about it or how the antibodies for it work. In my case (in the beginning) all of my EBV titers (IgG, IgM, early antigen, etc) were positive for many years after I'd had Mono and my Natural Killer Cell function was very low.

Have you tested your IgG SubClasses or Lymphocyte Subset panel? These would tell you more about the basic functioning of your immune system (more re: immune deficiency vs. autoimmunity).

Also I am trying to ruleout structural issues like CCI/AAI etc.
I know very little about this but there are many, many threads about it on PR if you do a Google Site Search.

I am suffering very severely and completely bedbound. Actually I cannot afford to take treatment of Complex Disease Center but I am thinking to stretch my budget if it can really help me. Plz suggest.
Some of the factors I would take into account is if you are well enough to travel, if it is safe for you to leave home right now in light of COVID, your financial situation, and your insurance situation. I would 100% recommend Center for Complex Diseases without hesitation. When I first went there in 2014 (actually it was OMI back then and CCD did not exist yet), the initial consult was around $350 vs. I believe it is around $1000 for a new patient now so it is not realistic for most patients.

My main symptoms are fatigue, PEM, extreme fatigue after eating, dysapnea,Orthostatic intolerance but no pots and no orthostatic hypotension
The two things that you mentioned that were very severe for me were dyspnea (shortness of breath) and the orthostatic intolerance (but I also had severe POTS and muscle weakness at that time).
 
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No problem and I am happy to help if I can. I was confused from your post if your doctor (if you have a current doctor?) suspects autoimmunity and if they mentioned Rituximab vs. if you chose Rituximab at random as a possible treatment? The people that I know (including myself) who had significant improvement from Rituximab all had either confirmed autoimmune diagnoses or they had multiple confirmed autoantibodies (but no clear autoimmune diagnosis yet).



Was your ANA titer ever positive at any point in your illness? There are many autoimmune panels so it is hard for me to suggest which ones might be relevant for you but the ones that were the most useful for me were Mayo Clinic Panels (and your doctor can order the tests and the blood sent to Mayo and you do not have to go there). I don't recommend Mayo for treatment but their lab is excellent, especially for obscure testing that cannot be done at regular labs.

The panels that were the most helpful for me were the Autoimmune Dysautonomia Panel (DYS1... but I think they changed the name now to DYS2) and the Paraneoplastic Autoantibody Panel (PAVAL). The other panel that was helpful was Cell Trend (in Germany) but this panel is not covered by US insurance and many US doctors will dismiss it outright b/c it is not from a US Lab (vs. the Mayo Panels they will take seriously). I also did some other Mayo Panels to rule out certain conditions that I did not have (but we wanted to be certain).



You said that you had Dengue in the past but now you said that the IgG was negative (so it did not show prior antibodies). Do you know for sure that you had Dengue? I do not know anything about it or how the antibodies for it work. In my case (in the beginning) all of my EBV titers (IgG, IgM, early antigen, etc) were positive for many years after I'd had Mono and my Natural Killer Cell function was very low.

Have you tested your IgG SubClasses or Lymphocyte Subset panel? These would tell you more about the basic functioning of your immune system (more re: immune deficiency vs. autoimmunity).



I know very little about this but there are many, many threads about it on PR if you do a Google Site Search.



Some of the factors I would take into account is if you are well enough to travel, if it is safe for you to leave home right now in light of COVID, your financial situation, and your insurance situation. I would 100% recommend Center for Complex Diseases without hesitation. When I first went there in 2014 (actually it was OMI back then and CCD did not exist yet), the initial consult was around $350 vs. I believe it is around $1000 for a new patient now so it is not realistic for most patients.



The two things that you mentioned that were very severe for me were dyspnea (shortness of breath) and the orthostatic intolerance (but I also had severe POTS and muscle weakness at that time).
Thanks for your inputs.
I have contacted CDC they are not able to give me appointment of Dr. Kaufman currently at least for next six months but they can schedule an appointment with Dr. Bella Chedda. I would like to know reviews of Dr. Bella Chedda. Is she really good as Dr. Kaufman or I should wait for Dr. Kaufman's appointment?
How much does the lab blood workup cost tentatively for CDC and can it be done remotely?
 

Gingergrrl

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Thanks for your inputs. I have contacted CDC they are not able to give me appointment of Dr. Kaufman currently at least for next six months but they can schedule an appointment with Dr. Bella Chedda. I would like to know reviews of Dr. Bella Chedda. Is she really good as Dr. Kaufman or I should wait for Dr. Kaufman's appointment? How much does the lab blood workup cost tentatively for CDC and can it be done remotely?
I've never met Dr. Chheda but I have several friends who have seen her who were very happy with her care. The cost of the lab work completely depends on what your insurance covers. When I first saw Dr. Kaufman in 2014, I had excellent insurance through my former employer and they covered everything. Then in 2015, I switched to an ACA plan and it was endless grief dealing with that insurance plan. And since 2019 I have had another insurance plan which is much better but still not as good as that of my former employer. So it truly depends on your insurance plan. I do all of my tests remotely now but the first 2-3 years, I did everything at their office. I would think due to COVID that you could do everything remotely but I am not sure if you would need to do the first office visit in person. Can you ask them on the phone?
 
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I've never met Dr. Chheda but I have several friends who have seen her who were very happy with her care. The cost of the lab work completely depends on what your insurance covers. When I first saw Dr. Kaufman in 2014, I had excellent insurance through my former employer and they covered everything. Then in 2015, I switched to an ACA plan and it was endless grief dealing with that insurance plan. And since 2019 I have had another insurance plan which is much better but still not as good as that of my former employer. So it truly depends on your insurance plan. I do all of my tests remotely now but the first 2-3 years, I did everything at their office. I would think due to COVID that you could do everything remotely but I am not sure if you would need to do the first office visit in person. Can you ask them on the phone?
Ok Thanks very much for all your information.
 

Hip

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Actually I cannot afford to take treatment of Complex Disease Center but I am thinking to stretch my budget if it can really help me.
On this forum, out of around 30 ME/CFS patients (with no other autoimmune diseases) who tried rituximab, only 1 benefited, but only moderately, she was not cured.

The rest of the 30 did not benefit in any significant way, and quite a few had serious side effects, including one patient who was made permanently worse. One ME/CFS patient (not on this forum) died after a very severe reaction to a rituximab infusion.

Large phase III clinical trial of rituximab for ME/CFS found that rituximab is of no benefit for ME/CFS patients, although earlier smaller trials did show some benefit.



There many ME/CFS treatments which are safer and cheaper. Examples include Valcyte, oxymatrine, vitamin B12 injections, tenofovir, GcMAF, IVIG, interferon, pyridostigmine and LDN. See: list of ME/CFS recovery and improvement stories.
 
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On this forum, out of around 30 ME/CFS patients (with no other autoimmune diseases) who tried rituximab, only 1 benefited, but only moderately, she was not cured.

The rest of the 30 did not benefit in any significant way, and quite a few had serious side effects, including one patient who was made permanently worse. One ME/CFS patient (not on this forum) died after a very severe reaction to a rituximab infusion.

Large phase III clinical trial of rituximab for ME/CFS found that rituximab is of no benefit for ME/CFS patients, although earlier smaller trials did show some benefit.



There many ME/CFS treatments which are safer and cheaper. Examples include Valcyte, oxymatrine, vitamin B12 injections, tenofovir, GcMAF, IVIG, interferon, pyridostigmine and LDN. See: list of ME/CFS recovery and improvement stories.
Thanks for your reply and information.
Do you have any experience with CDC?
Who will be better Dr. Kaufman or Dr Bella Chedda?
 

pogoman

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On this forum, out of around 30 ME/CFS patients (with no other autoimmune diseases) who tried rituximab, only 1 benefited, but only moderately, she was not cured.
Been on rituximab for 2 years now and scheduled to do an infusion next month.

Of course ME isn't a diagnosis in the US, when I joined PR in 2014 I had no diagnosis and no idea of how much the body can be screwed up lol
And now they've found I have myopathy, neuropathy, scoliosis, spondylosis, lipodystrophy, hypogonadism and now osteopenia :D