How I found the underlying cause of my CFS--anti NMDA antibodies

[msf]

Shawn, what has the bortezomib been prescribed for? From a quick google, it wouldn´t seem to have an effect on antibodies.

 

[msf]

If you don´t want to answer that question, it´s fine. I just don´t see the connection with ME. If it has been prescribed for something else, then good luck with the treatment.

 

[msf]

Ah, I see it does deplete plasma cells. Did you already try Rituximab?

 

[msf]

This study seems to suggest that they work in concert (in mice): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529137/

Sorry if everyone else is up to speed on this, I´d just never heard of it before.

 

[Gingergrrl]

If you don´t want to answer that question, it´s fine. I just don´t see the connection with ME. If it has been prescribed for something else, then good luck with the treatment.

He might not have seen your question yet and is in Asia. He has posted re: anti NMDA autoantibodies and shared his story in 3-4 threads but I don't want to speak for him and he could explain it much better than me! I really suspect he has not even seen your questions yet vs. not wanting to answer.

 

[SK2018]

Shawn, what has the bortezomib been prescribed for? From a quick google, it wouldn´t seem to have an effect on antibodies.

It hits antibody secreting plasma cells esp long lived plasma cells which RTX can't and my doc here thinks it's prudent to use it with Rituximab together,luckily
I had no side effects from it.

 

[SK2018]

He might not have seen your question yet and is in Asia. He has posted re: anti NMDA autoantibodies and shared his story in 3-4 threads but I don't want to speak for him and he could explain it much better than me! I really suspect he has not even seen your questions yet vs. not wanting to answer.

Correct I didn't see it I can't always be online and reply so fast ,I also tested positive for a type of ANA antibody

 

[SK2018]

Great article thanks for sharing ,will show to my doc here.

This study seems to suggest that they work in concert (in mice): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529137/

Sorry if everyone else is up to speed on this, I´d just never heard of it before.

 

[msf]

He might not have seen your question yet and is in Asia. He has posted re: anti NMDA autoantibodies and shared his story in 3-4 threads but I don't want to speak for him and he could explain it much better than me! I really suspect he has not even seen your questions yet vs. not wanting to answer.

Actually, I wasn´t being impatient, I said that because Bortezomib is usually used to treat multiple myeloma, and I thought it might be being used for to do that in this case. I am glad to hear that it isn´t, MM has to be one of the worst cancers out there.

 

[Jennifer J]

Finally my quest for the top best treatment and thus hope has paid off ,it was a long tough journey but I hope it inspires you all to never give up and for those of you in the UK the confidence to dump the dismissive NHS and seek respect ,trust and quality care and opportunities elsewhere.
Goodbye antibody secreting plasma cells and yes even you stubborn "long lived ones"

@Shawn, I've been wondering how you are doing. This news brought tears to my eyes. This is wonderful! I'm so happy to hear this.

 

[Gingergrrl]

Great article thanks for sharing ,will show to my doc here.

Agreed and thank you @msf and I just bookmarked the article too and save everything that I think might be useful some day!

Actually, I wasn´t being impatient, I said that because Bortezomib is usually used to treat multiple myeloma, and I thought it might be being used for to do that in this case. I am glad to hear that it isn´t, MM has to be one of the worst cancers out there.

Agreed on this, too, and my step-daughter's biological mom died of MM at age 39, it is a horrible cancer.

 

[SK2018]

http://www.sciencedirect.com/science/article/pii/S1083879113002243
Article showing bortz effects on the immune system.

 

[ivorin]

Correct I didn't see it I can't always be online and reply so fast ,I also tested positive for a type of ANA antibody

I'm glad for you Shawn, no one deserves this shit. Hope I hit some good luck while I can still think. All the best in your healthy life )

 

[SK2018]

2nd phase of treatment begins now which is 500mg Rituximab with good Corticosteroid pre meds,The first time I took RTX I blacked out after 10 minutes and 10mg,it has been 7 hours now and 200mg and so far no reactions,not sure why I man I longer allergic to it it's beyond my understanding.Fingers Crossed.

 

[Gingergrrl]

2nd phase of treatment begins now which is 500mg Rituximab with good Corticosteroid pre meds,The first time I took RTX I blacked out after 10 minutes and 10mg,it has been 7 hours now and 200mg and so far no reactions,not sure why I man I longer allergic to it it's beyond my understanding.Fingers Crossed.

Hi Shawn, I am so glad you are getting the Rituximab and that it is going well this time. So your dose is 500 mg and the infusion is now at 7 hrs for the first 200 mg? Does this mean you are in the hospital and the infusion will take 21 hours total (if my math is correct)? Or are you dividing the infusion into a two or three day split dose?

Rituximab was approved by my insurance (I will have it later in July) but my dose is 600 mg based on the 375 mg/BSA formula and my understanding is that it is a 1:1 ratio so it will be mixed with approx 600 ml of saline. I will be doing it at the outpatient infusion center where I have done 11 months of IVIG with the plan to complete the infusion in 8 hours (the nurse I will be working with will be doing a ten hour shift which allows time for IV Benadryl pre-med and if we should need to stop the infusion due to allergic reaction, etc).

From your experience, is this plan realistic?

Edit: I just noticed from your photo that your infusion speed is 12.5 and was curious, will they be speeding it up or will that be your speed for the entire infusion? I do IVIG at a speed of 40 (which is very slow and some do it at 300!) but it works for me and takes about 7 hrs. But I do the IVIG in a 3-day split dose which I will not be able to do with Rituximab.

 

[SK2018]

Your estimate is more or less correct yes roughly one day,it's to try and avoid cytokine storms,I'm now 13 hours in at the time of writing this comment and so far so good ,it's not over til the fat lady sings though they will speed it up to a meagre 15ML/hr soon that's it,they wanna keep it slow.One time full 500mg then maybe 10mg into the CSF later by lumbar injection to boost CSF and behind BBB depletion.
I Have a secondary A typical style ANA antibody that was discovered via rat brain tissue assay before which is the main culprit now for me more than the NMDA r ABs.

My pre med was a steroid called "rinderol" or something ,it's a form of "betamethasone" and is combined with an antibiotic ,it has a low mineral cortico content so is one of the most side effect free steroids..

Your plan sounds good if your doctor had laid it out i trust it's the best

I'm frankly worried about my immune compromised state after this B cell depletion.

Hi Shawn, I am so glad you are getting the Rituximab and that it is going well this time. So your dose is 500 mg and the infusion is now at 7 hrs for the first 200 mg? Does this mean you are in the hospital and the infusion will take 21 hours total (if my math is correct)? Or are you dividing the infusion into a two or three day split dose?

Rituximab was approved by my insurance (I will have it later in July) but my dose is 600 mg based on the 375 mg/BSA formula and my understanding is that it is a 1:1 ratio so it will be mixed with approx 600 ml of saline. I will be doing it at the outpatient infusion center where I have done 11 months of IVIG with the plan to complete the infusion in 8 hours (the nurse I will be working with will be doing a ten hour shift which allows time for IV Benadryl pre-med and if we should need to stop the infusion due to allergic reaction, etc).

From your experience, is this plan realistic?

Edit: I just noticed from your photo that your infusion speed is 12.5 and was curious, will they be speeding it up or will that be your speed for the entire infusion? I do IVIG at a speed of 40 (which is very slow and some do it at 300!) but it works for me and takes about 7 hrs. But I do the IVIG in a 3-day split dose which I will not be able to do with Rituximab.

 

[ErdemX]

@Shawn I am glad that this time you seem to tolerate Rituximab infusion. I hope everything goes smoothly.

Although I am a bit confused because I think you recently had a Bortezomib infusion. And this drug was supposed to be an alternative to Rituximab?

What was the reason to get Rituximab after Bortezomib?

 

[Gingergrrl]

Your estimate is more or less correct yes roughly one day, it's to try and avoid cytokine storms,I'm now 13 hours in at the time of writing this comment and so far so good ,it's not over til the fat lady sings though

@Shawn, how did it go?!!! Were you able to complete the Ritux infusion? I was so curious last night but did not want to disturb you. I'm hoping it all went perfectly for you

It sounds like you were able to do the infusion in the hospital based on your initial adverse reaction to it? I was able to book my two Ritux infusions for July but they will be in the outpatient infusion center where I do my IVIG. With my insurance, they want you to try it as an outpatient first (to save of course) and if you have a problem, then you might be granted permission to try it in the hospital. But not the other way around. So I'll be doing it as an outpatient and hoping for the best! And luckily the infusion center is only 5 min from the ER.

One time full 500mg then maybe 10mg into the CSF later by lumbar injection to boost CSF and behind BBB depletion.

Do you know how much saline was mixed with your 500 mg? I am still working on clarifying the amount of saline I will receive (even though I have the insurance Auth and Doctor's order and was able to book my infusions). Was yours a 1:1 ratio meaning that your 500 mg of Ritux was mixed with 500 ml of saline? I was also curious if you received additional saline before the Ritux infusion. (No worries if you do not know)!

I have never heard of Ritux being injected into the CSF! Can you explain more about that?

I Have a secondary A typical style ANA antibody that was discovered via rat brain tissue assay before which is the main culprit now for me more than the NMDA r ABs

So you have another auto-antibody, besides the anti NMDA, that they think is the main culprit? Does this change your treatment? In my case b/c we have identified 11 autoantibodies, we stopped looking for more b/c my doctor said it would not change my treatment plan of high dose IVIG and Rituximab (even though it would still be very interesting info to have and measure).

My pre med was a steroid called "rinderol" or something ,it's a form of "betamethasone" and is combined with an antibiotic ,it has a low mineral cortico content so is one of the most side effect free steroids..

I have never heard of this steroid before. Did it work well for you? My main pre-med will be IV Benadryl (plus Tylenol and the standard stuff). If I have an allergic reaction that does not stop with stopping the Ritux, doing plain saline, and adding more Benadryl, then I would have Solumedrol (but am hoping this does not happen)!

Your plan sounds good if your doctor had laid it out i trust it's the best

I feel about as confident with my plan as possible and there is truly no way to predict in advance if I will be allergic. We will start at a super slow speed (like 10) but will have to bump it up each 30 to 60 min in order to finish it on time. But my doctor wrote that the infusion must be an eight hour minimum (regardless how well I might be tolerating it).

I'm frankly worried about my immune compromised state after this B cell depletion.

My understanding is that we should not be near someone who has had a "live vaccine" (like in the same household, obviously we cannot know who in public has had one!) and my family, caregiver, friends, etc, know that I won't be around them if they get sick w/something contagious. But in general, I don't think there are too many precautions we can take. I know that prior TB and Hepatitis can reactivate from Rituximab but I have never had either so I am okay.

What was the reason to get Rituximab after Bortezomib?

This last question is @ErdemX's but I am curious re: the answer as well!

 

[SK2018]

One word: .... COST

@Shawn I am glad that this time you seem to tolerate Rituximab infusion. I hope everything goes smoothly.

Although I am a bit confused because I think you recently had a Bortezomib infusion. And this drug was supposed to be an alternative to Rituximab?

What was the reason to get Rituximab after Bortezomib?

 

[SK2018]

@Shawn, how did it go?!!! Were you able to complete the Ritux infusion? I was so curious last night but did not want to disturb you. I'm hoping it all went perfectly for you

SHAWN: Completed yes.

It sounds like you were able to do the infusion in the hospital based on your initial adverse reaction to it? I was able to book my two Ritux infusions for July but they will be in the outpatient infusion center where I do my IVIG. With my insurance, they want you to try it as an outpatient first (to save of course) and if you have a problem, then you might be granted permission to try it in the hospital. But not the other way around. So I'll be doing it as an outpatient and hoping for the best! And luckily the infusion center is only 5 min from the ER.

SHAWN:no initial reaction they prefer do it as an inpatient here.


Do you know how much saline was mixed with your 500 mg? I am still working on clarifying the amount of saline I will receive (even though I have the insurance Auth and Doctor's order and was able to book my infusions). Was yours a 1:1 ratio meaning that your 500 mg of Ritux was mixed with 500 ml of saline? I was also curious if you received additional saline before the Ritux infusion. (No worries if you do not know)!


SHAWN: roughly 600ml

I have never heard of Ritux being injected into the CSF! Can you explain more about that?

SHAWN: yes it is done for B cell cancer of the cns and some MS cases ,dose is around 10/25mg usually well tolerated safer than intrathecal methotrexate ,sometimes works sometimes does not but it's into the target area.
ARTICLE LINK
https://www.ncbi.nlm.nih.gov/m/pubmed/25745637/


So you have another auto-antibody, besides the anti NMDA, that they think is the main culprit? Does this change your treatment? In my case b/c we have identified 11 autoantibodies, we stopped looking for more b/c my doctor said it would not change my treatment plan of high dose IVIG and Rituximab (even though it would still be very interesting info to have and measure).

SHAWN: yes the main culprit it inflames neural blood vessels and causes more swelling its worse,but treatment won't change so I don't pay much attention to names of antibodies.


I have never heard of this steroid before. Did it work well for you? My main pre-med will be IV Benadryl (plus Tylenol and the standard stuff). If I have an allergic reaction that does not stop with stopping the Ritux, doing plain saline, and adding more Benadryl, then I would have Solumedrol (but am hoping this does not happen)!

SHAWN: It's a synthetic form of BETAMETAHSONE ,i would ask for at least 200mg methyl pred before RTX as most of RTX issues are immune reactions or Cytokine related steroids are best for dampening that.
But we still need some immune support to activate complement so that RTX can do it's job and recruit NK cells to kill B cells.


I feel about as confident with my plan as possible and there is truly no way to predict in advance if I will be allergic. We will start at a super slow speed (like 10) but will have to bump it up each 30 to 60 min in order to finish it on time. But my doctor wrote that the infusion must be an eight hour minimum (regardless how well I might be tolerating it).

SHAWN: my doc was patient my infusion was spread over one day at a constant 20.their main aim was to keep me safe.

My understanding is that we should not be near someone who has had a "live vaccine" (like in the same household, obviously we cannot know who in public has had one!) and my family, caregiver, friends, etc, know that I won't be around them if they get sick w/something contagious. But in general, I don't think there are too many precautions we can take. I know that prior TB and Hepatitis can reactivate from Rituximab but I have never had either so I am okay.

SHAWN: correct ,they will put me on stable valcyclovir antivirals and broad spectrum daily ABX for a month I'll be wearing a mask and taking many precautions.


This last question is @ErdemX's but I am curious re: the answer as well!