Rituxan Number Three, Some Improvement, Still Early to Tell

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At Center for Complex Diseases, their experience is that it takes 4-6 months (usually) to see major improvement, if you're going to respond. They say that they've had non-responders, but have not had a patient permanently worsen from Rituxan. I have neuroimmune disease, Lyme/other TBD, neurological autoimmune disease, EDS, PID, NKCF deficiency, and moderate to severe MCAS.

I just did Rituxan infusion number three. I have been doing a little better after my first two Rituxan infusions in mid to late November (2018). It's still early to tell to what degree I will respond. My muscle strength has improved without a doubt, but my steps are about the same. I still get PEM from overdoing it (pain, headaches, and insomnia, mostly), but I do a lot more than I used to, even within the same step count (i.e. packing a large house to move and shuffling heavy boxes up and down stairs). At least for me, Rituxan is one of the easier treatments I've done- I found LDN and marijuana derived CBDs harder to tolerate as well as Dapsone, and many, many psych drugs... Oh, and SubQ IgG was REALLY hard for me, just killed by body and aggravated neuroinflammatory stuff (possibly MCAS related).

After my first two Rituxan infusions, I haven't had any unusual infections, worsening of reactivated pathogens, etc. Got one cold that turned into a sinus infection, but that's par for the course in the winter time. I used to be sick all year with colds and sinus infections before I became moderate to severely ill with neuroimmune disease. I'm not wearing a mask in public except on planes or at hospitals.

With MS, it sometimes takes two years of treatment before things like gray matter volume/lesion counts stabilize (and potentially improve). Hard to know if B cells infiltrate the brain in neuroimmune disease like they do in MS, but Younger, et al., seem to think this is possible. Besides the B-cell/brain problems, Rituxan should help with autoimmune illnesses. I certainly have a good deal of neurological autoimmunity (all positive Cell Trend and Cunningham Panel as well as early Sjogren's ABs and others) as do many other patients. CCD doesn't seem to do Rituxan unless patients test positive/high for autoantibodies of various sorts. Also, my skin punch for SFP was positive, which can sometimes help diagnosis and insurance approval of Rituxan. MCAS was not a reason I was prescribed Rituxan, but perhaps it will improve. Mine's been reasonably under control after I cleared up the TBD to the degree possible (14 mos of IV Rocephin and a lot of oral abx plus Mepron). I do a lot of H1/H2 blockers, Gastrocrom, and quercetin/rutin. Am going to try PEA this week.
 
Messages
41
Likes
105
Location
Sacramento, CA
At Center for Complex Diseases, their experience is that it takes 4-6 months (usually) to see major improvement, if you're going to respond. They say that they've had non-responders, but have not had a patient permanently worsen from Rituxan. I have neuroimmune disease, Lyme/other TBD, neurological autoimmune disease, EDS, PID, NKCF deficiency, and moderate to severe MCAS.

I just did Rituxan infusion number three. I have been doing a little better after my first two Rituxan infusions in mid to late November (2018). It's still early to tell to what degree I will respond. My muscle strength has improved without a doubt, but my steps are about the same. I still get PEM from overdoing it (pain, headaches, and insomnia, mostly), but I do a lot more than I used to, even within the same step count (i.e. packing a large house to move and shuffling heavy boxes up and down stairs). At least for me, Rituxan is one of the easier treatments I've done- I found LDN and marijuana derived CBDs harder to tolerate as well as Dapsone, and many, many psych drugs... Oh, and SubQ IgG was REALLY hard for me, just killed by body and aggravated neuroinflammatory stuff (possibly MCAS related).

After my first two Rituxan infusions, I haven't had any unusual infections, worsening of reactivated pathogens, etc. Got one cold that turned into a sinus infection, but that's par for the course in the winter time. I used to be sick all year with colds and sinus infections before I became moderate to severely ill with neuroimmune disease. I'm not wearing a mask in public except on planes or at hospitals.

With MS, it sometimes takes two years of treatment before things like gray matter volume/lesion counts stabilize (and potentially improve). Hard to know if B cells infiltrate the brain in neuroimmune disease like they do in MS, but Younger, et al., seem to think this is possible. Besides the B-cell/brain problems, Rituxan should help with autoimmune illnesses. I certainly have a good deal of neurological autoimmunity (all positive Cell Trend and Cunningham Panel as well as early Sjogren's ABs and others) as do many other patients. CCD doesn't seem to do Rituxan unless patients test positive/high for autoantibodies of various sorts. Also, my skin punch for SFP was positive, which can sometimes help diagnosis and insurance approval of Rituxan. MCAS was not a reason I was prescribed Rituxan, but perhaps it will improve. Mine's been reasonably under control after I cleared up the TBD to the degree possible (14 mos of IV Rocephin and a lot of oral abx plus Mepron). I do a lot of H1/H2 blockers, Gastrocrom, and quercetin/rutin. Am going to try PEA this week.
I forgot to mention that I've tried many, many other treatments, including about 100 FMTs from a screened donor. Many treatments have helped, as I used to be bed and wheelchair bound, but I'm not back to "normal" which was, in the past, highly athletic and active.
 

valentinelynx

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Thanks for sharing. I'm going for rituximab infusion #2 next week. I, too, have high CellTrend Ab's (haven't done Cunningham), & early Sjögren's Ab's. Also did over a year of ceftriaxone (Rocephin). Right now, I really can't afford to do these infusions, but I'm hoping that this will work, and then I'll be able to work, making it a sound investment ;). IVIG has helped some, but not gangbusters. After 25 years, it's hard to hope, but I'm trying. I really appreciate reading other people's stories, so I don't feel alone in this!
 

Learner1

Administrator
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Yes, thank you for sharing. Please keep us updated. I am in the queue to begin Rituximab as well. My doctor highly encouraged me to talk to other patients about their experiences before deciding to do it. I also got a second opinion from a local immunologist who felt that it was a low risk option and just might work in my situation. I have been on IVIG for 18 months and have gradually improved and it's gotten easier, but I still am on a lot of drugs for MCAS and hyper POTS and am hoping that Rituximab can get me to a point where I'm not so dependent on them.
 
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105
Location
Sacramento, CA
Yes, thank you for sharing. Please keep us updated. I am in the queue to begin Rituximab as well. My doctor highly encouraged me to talk to other patients about their experiences before deciding to do it. I also got a second opinion from a local immunologist who felt that it was a low risk option and just might work in my situation. I have been on IVIG for 18 months and have gradually improved and it's gotten easier, but I still am on a lot of drugs for MCAS and hyper POTS and am hoping that Rituximab can get me to a point where I'm not so dependent on them.
I hope it works for you!! I'm definitely better, but it's still a tad early to know the full extent of how I will feel without the offending ABs. Also, I need to re-test ABs using CellTrend and Cunningham Panel in a few mos- will let you know if they decreased as we have hoped.

Also, I just had a bunch of bloodwork at the three month point of my Rituxan infusions, and my herpes titer ABs went down, a good sign.
 
Messages
41
Likes
105
Location
Sacramento, CA
Thanks for sharing. I'm going for rituximab infusion #2 next week. I, too, have high CellTrend Ab's (haven't done Cunningham), & early Sjögren's Ab's. Also did over a year of ceftriaxone (Rocephin). Right now, I really can't afford to do these infusions, but I'm hoping that this will work, and then I'll be able to work, making it a sound investment ;). IVIG has helped some, but not gangbusters. After 25 years, it's hard to hope, but I'm trying. I really appreciate reading other people's stories, so I don't feel alone in this!
You are not alone :)! I hope the Rituxan helps!!