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

[SK2018]

thanks mate ,it's a struggle for sure but we don't go down without a fight and every small gain is appreciated.

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 )

 

[Gingergrrl]

@Shawn Your post (#220) was inside of a yellow quote box so I copy & pasted the parts I wanted to respond to (and I really appreciate all of your thorough answers)! I hope you are recovering nicely from the Ritux and no negative side effects.

SHAWN: Completed yes.

Yay! Am so glad that you completed it! That is great news

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

I had thought you had a bad reaction the first time you tried it and that is why they slowed down the speed and are doing it in a hospital? Sorry for my confusion. I wish they preferred for everyone to try the first dose inpatient here but they don't. I could challenge this issue but it would take months and my entire approval could end up getting denied so I am going to attempt it as an outpatient. The reason I feel comfortable is b/c the infusion center has done my IVIG for eleven months and really knows me well and understands the issues I may encounter vs. a random nurse in a hospital who might not (in my case).

SHAWN: roughly 600ml

Thank you and that is extremely helpful info. I am going to be doing 600 mg Ritux and am going to clarify further re: the amount of saline w/both my docs and my infusion nurse (b/c I will have one more cycle of IVIG before I do Ritux mid-July). My understanding is that it should be a 1:1 ratio, and often patients do extra saline before and after, but my preference is to skip that part.

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/

Thanks and I will look at the article but not sure it will apply to me b/c I do not have cancer? Is it being done for autoimmunity in your case?

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.

This is my understanding, too. (That even if I have 100 more autoantibodies that we have not identified yet, the treatment will not change).

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 do not do well with steroids at all so am hoping to just have the IV Benadryl and other pre-meds and we'll save the steroid (Solumedrol) for if I have a reaction. What do you mean re: the sentence that I bolded in your quote (re: activating complement so RTX can do it's job?)

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.

That is interesting and I will not be put on antivirals or antibiotics or wearing a mask. I asked both of my doctors but they said it is not necessary. I am not sure if this is b/c I will be having six more months of high dose IVIG (which is protective to the immune system) or if they just do not do this with RTX in the US? But I am to avoid being in the same household w/anyone who has had a "live vaccine". Am a little concerned now hearing this and wonder if I am missing something?!! I didn't see anything in the prescribing info about this. Are you considered immuno-compromised b/c you also did the Bortezomib and prior steroids or is it purely from the RTX?

Thanks again!

 

[flitza]

@Shawn Your post (#220) was inside of a yellow quote box so I copy & pasted the parts I wanted to respond to (and I really appreciate all of your thorough answers)! I hope you are recovering nicely from the Ritux and no negative side effects.



Yay! Am so glad that you completed it! That is great news



I had thought you had a bad reaction the first time you tried it and that is why they slowed down the speed and are doing it in a hospital? Sorry for my confusion. I wish they preferred for everyone to try the first dose inpatient here but they don't. I could challenge this issue but it would take months and my entire approval could end up getting denied so I am going to attempt it as an outpatient. The reason I feel comfortable is b/c the infusion center has done my IVIG for eleven months and really knows me well and understands the issues I may encounter vs. a random nurse in a hospital who might not (in my case).



Thank you and that is extremely helpful info. I am going to be doing 600 mg Ritux and am going to clarify further re: the amount of saline w/both my docs and my infusion nurse (b/c I will have one more cycle of IVIG before I do Ritux mid-July). My understanding is that it should be a 1:1 ratio, and often patients do extra saline before and after, but my preference is to skip that part.



Thanks and I will look at the article but not sure it will apply to me b/c I do not have cancer? Is it being done for autoimmunity in your case?



This is my understanding, too. (That even if I have 100 more autoantibodies that we have not identified yet, the treatment will not change).



I do not do well with steroids at all so am hoping to just have the IV Benadryl and other pre-meds and we'll save the steroid (Solumedrol) for if I have a reaction. What do you mean re: the sentence that I bolded in your quote (re: activating complement so RTX can do it's job?)



That is interesting and I will not be put on antivirals or antibiotics or wearing a mask. I asked both of my doctors but they said it is not necessary. I am not sure if this is b/c I will be having six more months of high dose IVIG (which is protective to the immune system) or if they just do not do this with RTX in the US? But I am to avoid being in the same household w/anyone who has had a "live vaccine". Am a little concerned now hearing this and wonder if I am missing something?!! I didn't see anything in the prescribing info about this. Are you considered immuno-compromised b/c you also did the Bortezomib and prior steroids or is it purely from the RTX?

Thanks again!

Just wanted to bring attention to the fact that FDA just approved a Rituximab combo with a hyaluronidase, from Genentech called Rituxan Hycela which can be administered subcutaneously, thus avoiding the intravenous risks/issues. This was approved about a week ago and is thought to be primarily for oncologic issues but I would consider asking for it for our purposes as well.

 

[Gingergrrl]

Just wanted to bring attention to the fact that FDA just approved a Rituximab combo with a hyaluronidase, from Genentech called Rituxan Hycela which can be administered subcutaneously, thus avoiding the intravenous risks/issues. This was approved about a week ago and is thought to be primarily for oncologic issues but I would consider asking for it for our purposes as well.

That is interesting and I have never heard of Rituxan Hycela and plan to Google it to see what it is. I wonder if Genentech/Roche are trying to re-market it since it will go off patent to jack up the price? Or maybe this is truly something new and different? In my case, I am approved for regular Rituxan and will have first infusion in approx 2.5 wks so it would not apply to me but would still like to learn more about it.

Edit: I'd also be concerned about allergic reaction with an injection b/c once given, it cannot be reversed vs. with an infusion, you can start at a super tiny micro speed and stop the infusion the minute there is even a sign of allergy.

 

[flitza]

That is interesting and I have never heard of Rituxan Hycela and plan to Google it to see what it is. I wonder if Genentech/Roche are trying to re-market it since it will go off patent to jack up the price? Or maybe this is truly something new and different? In my case, I am approved for regular Rituxan and will have first infusion in approx 2.5 wks so it would not apply to me but would still like to learn more about it.

Edit: I'd also be concerned about allergic reaction with an injection b/c once given, it cannot be reversed vs. with an infusion, you can start at a super tiny micro speed and stop the infusion the minute there is even a sign of allergy.

No. It's a new thing. Just approved less than a week ago by the FDA. The hyaluronidase part has been used with lots of other drugs, but this combo is new.

I guess one could get a small subcutaneous skin test before with it.

I think in general, it's advantageous to have a subcutaneous application.

 

[Gingergrrl]

I think in general, it's advantageous to have a subcutaneous application.

Why? I am just curious and do not know the answer! I know with my high dose IVIG, it is not possible to do sub-q b/c we would never be able to get the dose high enough. I wonder if that would be the same with this new Ritux combo?

 

[Gingergrrl]

No. It's a new thing. Just approved less than a week ago by the FDA. The hyaluronidase part has been used with lots of other drugs, but this combo is new.

https://www.gene.com/media/press-releases/14670/2017-06-22/fda-approves-rituxan-hycela-rituximab-an

@flitza I found some info re: this new med Rituxan Hycela (link above) in case anyone is interested. Not sure if it would apply to @Shawn or anyone following this thread but after you mentioned it, I wanted to find more info. It sounds like it is only for three types of lymphoma and not FDA approved for any autoimmune conditions at this point.

 

[justy]

@Shawn - glad to hear you are doing OK. I am really struck by how well you are being looked after, medically speaking by your team and the knowledge they have. I react to prednisolone, but here in the good old UK, and when I was in Brussels they had no other steroid to offer me (or wouldn't), when I needed one.

Im really impressed by how seriously they take possible reactions, especially after my recent debacle with a reaction to IV antibiotics. Hoping it works for you.

 

[SK2018]

Why? I am just curious and do not know the answer! I know with my high dose IVIG, it is not possible to do sub-q b/c we would never be able to get the dose high enough. I wonder if that would be the same with this new Ritux combo?

Ritux is available here at least , via SC infusion

 

[SK2018]

That is interesting and I have never heard of Rituxan Hycela and plan to Google it to see what it is. I wonder if Genentech/Roche are trying to re-market it since it will go off patent to jack up the price? Or maybe this is truly something new and different? In my case, I am approved for regular Rituxan and will have first infusion in approx 2.5 wks so it would not apply to me but would still like to learn more about it.

Edit: I'd also be concerned about allergic reaction with an injection b/c once given, it cannot be reversed vs. with an infusion, you can start at a super tiny micro speed and stop the infusion the minute there is even a sign of allergy.

Agree I would feel safer via IV actually for the reversal reasons

 

[flitza]

Ritux is available here at least , via SC infusion

Well, I think there are lots of factors involved. As you suggested the amount of the substance that has to be administered is one. But this is a bit more complex as well. On the one hand, the sheer volume required may dictate the necessity of intravenous administration, but on the other hand, that might be determined by local toxicity factors.


In other words, not a physical characteristic of the drug and it's suspension, for example but of the way the drug could act on local tissues. If it's a very caustic substance it could not be administered directly subcutaneously or intramuscularly but would have to be diluted and then, because of the volume be administered intravenously. I believe that was an issue with many oncologic agents.


So it seems that this new formulation of Rituximab to combine it with a hyaluronidase allows larger volumes to be administered subcutaneously.


It is better to avoid intravenous when possible for a number of reasons. There are more inherent risks which then also means more technical demands on the staff doing the administration. Intravenous administration requires much more time. Then naturally comes the expense involved with these factors. And, of course avoiding the discomfort of an IV stick for the patient.


I have no idea if it's approved for use in any conditions other than cancer.


These are just a few thoughts on the matter. I haven't really delved into it.

Agree I would feel safer via IV actually for the reversal reasons

About the allergy issue, I guess one could get a small test dose first..

 

[flitza]

Why? I am just curious and do not know the answer! I know with my high dose IVIG, it is not possible to do sub-q b/c we would never be able to get the dose high enough. I wonder if that would be the same with this new Ritux combo?

I replied below, by mistake to a post of Shawn's I think.

 

[Gingergrrl]

@Shawn - glad to hear you are doing OK. I am really struck by how well you are being looked after, medically speaking by your team and the knowledge they have.

@justy I totally agree and am so impressed with the level of care that @Shawn received for the Rituximab as well as the knowledge of the medical team.

I react to prednisolone, but here in the good old UK, and when I was in Brussels they had no other steroid to offer me (or wouldn't), when I needed one.

I remember that and what a horrible ordeal you went through. I am still confused if prednisolone and solumedrol are exactly the same but if I have a reaction to the Ritux, I will be getting solumedrol in the IV.

Im really impressed by how seriously they take possible reactions, especially after my recent debacle with a reaction to IV antibiotics. Hoping it works for you.

Agreed 100%!

On the one hand, the sheer volume required may dictate the necessity of intravenous administration, but on the other hand, that might be determined by local toxicity factors.

I think it is a combination of the sheer volume, the slow infusion speed that many of us require, and potential toxicity factors. My doctor said Ritux is not toxic on the veins like other chemos but I still can't imagine it being injected directly into the muscle.

About the allergy issue, I guess one could get a small test dose first..

Rituximab can have fatal infusion reactions for up to 24 (or 48?) hours after the infusion even in someone who does not have any mast cell disease. So in my own case, I would not feel comfortable with a small test dose being adequate. Anaphylaxis can occur hours into the infusion (although the most severe would occur immediately).

So starting at a super slow speed is absolutely crucial (like just a few drops!) and then being able to stop the infusion completely and give saline, IV benadryl, solumedrol, etc, if needed. I think this is much too risky of a med to give by injection IMO.

 

[SK2018]

B cells depleted and IGG low. all else strong and good ,infection risk is minimally increased but not by much ,plenty of strong T cells remaining.

 

[ErdemX]

@Shawn

I guess it looks perfect so far.

Now will you repeat Rituximab in a similar fashion as the Norway studies? Or the doctors over there have a different pattern for your case?

 

[SK2018]

@Shawn

I guess it looks perfect so far.

Now will you repeat Rituximab in a similar fashion as the Norway studies? Or the doctors over there have a different pattern for your case?

One more infusion

 

[Gingergrrl]

B cells depleted and IGG low. all else strong and good ,infection risk is minimally increased but not by much ,plenty of strong T cells remaining.

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Absolute great news @Shawn! Have you had any side effects from the Ritux? Is your next infusion being done two weeks from the first infusion? My first is one week from today... so am following your thread carefully!

 

[SK2018]

Absolute great news @Shawn! Have you had any side effects from the Ritux? Is your next infusion being done two weeks from the first infusion? My first is one week from today... so am following your thread carefully!

No side effects at all ,huge surprise,next infusion is 2 weeks later.

 

[Gingergrrl]

No side effects at all ,huge surprise,next infusion is 2 weeks later.

That is great to hear that you have had no side effects!

 

[Gingergrrl]

@Shawn I forgot to ask, did you end up taking anti-virals and wearing mask, etc, after Ritux or did your doctor feel this was unucessary after all?