How to get prescribed Rituxan?

[Blake2e]

Thanks for explaining and that makes sense. I was curious, what reaction did you get to the saline? Do you think it was infused too quickly?

I got a light reaction from the saline, slight increase in severity of migraine and a bit more brain fog. Dont think it was because it was infused to fast, just that I'm so reactive.

It definitely cannot hurt to check B cell levels now although it is possible that they are not at zero from the first infusion alone (but they very well might be).

I'm gonna see what the dr says about that. I dont want to draw blood if the Rituxan is still in my system working -meaning

How strange re: the finger infection although it does say that Ritux can cause skin reactions in the prescribing info. I am wondering if the combination of the high dose steroids with the Ritux caused it? I do not do well with steroids although I have been on a low/moderate dose of Cortef for 3.5 years and currently in the process of tapering off. Which steroid do you take?

Seeing as I didnt devvelop any new infections in the 5 months I've been on steroids, I'm inclined to say that it was the Rituxan that made it happen. The immune suppressing effects of steroids and Rituxan together must've made that happen. I alternate b/w 6 different steroids every 5-8 days. I take dosages equivalent to 20mg prednisone. The only reason I am able to do this is thanks to Xolair. If I take Xolair while on steroids the the Xolair does work for me at least somewhat and that in turn helps me tolerate and allow steroids to work somewhat well enough for me. If I had to say how much of my steroids dosage actually gets past my immune system and is actually made used by my body then I would say about half.

That is tricky having both MCAS and immunodeficiency. Do you have CVID? I would think that the IVIG would be protective (in general) if you have CVID but even more so if you are now doing Ritux. Will you be able to overlap the two for the entire course of treatment? I would also tend to agree w/you that tapering down the steroid would be protective (but of course it has to be done slowly and with your doctor's advice). Is the steroid for MCAS or another autoimmune condition?

Best wishes and glad your finger is improving.

Edit: If the steroid is stopping anaphylaxis than of course this is a different story and makes it much more complex.

Dont have CVID. My next IVIG infusion is the day after my next Rituxan infusion. The steroids are for the MCAS. As far a I'm aware I dont have any autoimmunes. Docs searched for it (Im aware they do miss a lot of things) and I dont suspect I have it, all my symptoms fit in with MCAS caused by excess IgE production. The reason I need the steroids is b/c I've become allergic to all my clothes (even the organic dye-free ones). And I dont know if you had a sun allergy with your MCAS but I also have an EMF allergy that is triggered non-stop and it is the equivalent to standing out in the sun. Very fortunately, anaphylaxis is not one of my symptoms.

Thanks! I'm glad the finger is doing better too. Just need to taper of the steroids so my immune system isnt so open.

 

[Gingergrrl]

I dont want to draw blood if the Rituxan is still in my system working -meaning

I don't think having a blood draw would affect the Rituxan working or not working (unless I am not understanding what you mean)?

The immune suppressing effects of steroids and Rituxan together must've made that happen.

That makes sense.

My next IVIG infusion is the day after my next Rituxan infusion.

Wow, that is hardcore and I have never done them back to back like that.

The reason I need the steroids is b/c I've become allergic to all my clothes (even the organic dye-free ones). And I dont know if you had a sun allergy with your MCAS but I also have an EMF allergy that is triggered non-stop and it is the equivalent to standing out in the sun. Very fortunately, anaphylaxis is not one of my symptoms.

There was never any point that I was allergic to my clothes or to EMF but I was allergic to the sun and would get a red/burning skin rash from the sun (even through my clothing). Luckily this does not happen any more. The severe allergic reactions (in 2015 and early 2016) were from food, artificial dyes used in both food or medications, and from smells/odors. All of this is gone now although I still have not been brave enough to test the dyes that caused me anaphylaxis and my meds remain dye-free (and two are compounded) to be safe.

 

[Blake2e]

I don't think having a blood draw would affect the Rituxan working or not working (unless I am not understanding what you mean)?

Really? I was thinking it would be like the IVIG and you wouldnt want to remove any blood from yourself lest you just be taking out the expensive medication.

Wow, that is hardcore and I have never done them back to back like that.

Is it bad to do them back to back?

There was never any point that I was allergic to my clothes or to EMF but I was allergic to the sun and would get a red/burning skin rash from the sun (even through my clothing). Luckily this does not happen any more. The severe allergic reactions (in 2015 and early 2016) were from food, artificial dyes used in both food or medications, and from smells/odors. All of this is gone now although I still have not been brave enough to test the dyes that caused me anaphylaxis and my meds remain dye-free (and two are compounded) to be safe.

I have noticed that my MCAS seems to be leaps and bounds worse than anyone else I've read about, in terms of number of sensitivities and degree of sensitivity. I guess the silver lining for me is no anaphylaxis (cant imagine how terrible this would be to have all the time) and moderate/minimal skin stuff. In terms of number of sensitivities I literally am allergic to every food (but non-fortified white rice and lean chicken/turkey) and drug I've ever tried and almost everything in my environment. Meh. Hopefully Rituxan pulls through for me and I dont need to try some real heavy duty chemo drugs.

 

[Gingergrrl]

Really? I was thinking it would be like the IVIG and you wouldnt want to remove any blood from yourself lest you just be taking out the expensive medication.

Honestly, it never even occurred to me that doing a blood test could remove the drug from your system! I did fairly constant blood work throughout the 2 yrs of IVIG and one year of Rituximab and never noticed it having any impact. My understanding is that the first infusion of Ritux kills the B-cells in the majority of people (for autoimmunity, probably not for cancer) and if it didn't, than the second infusion (14 days later) kills the remaining B cells. But please check w/your doctor and nothing I ever say is meant as medical advice!

Is it bad to do them back to back?

I don't know that it is "bad" or dangerous but it would be extremely difficult on the body and I would not have been able to tolerate the sheer amount of fluid in such a short amount of time b/c I got third spacing (from MCAS). The closest interval I ever had between IVIG and Rituximab was about 2 weeks.

I have noticed that my MCAS seems to be leaps and bounds worse than anyone else I've read about, in terms of number of sensitivities and degree of sensitivity. I guess the silver lining for me is no anaphylaxis (cant imagine how terrible this would be to have all the time) and moderate/minimal skin stuff.

The anaphylaxis was horrible but my skin reactions were very infrequent and minimal. The only anaphylaxis reaction in which my entire body turned bright red and I got hives was to Yellow food dye #5 (Tartrazine) which I will avoid for the rest of my life. In every restaurant, I still have to ask if they use dye-free butter (and all my close friends and family know to ask as well).

In terms of number of sensitivities I literally am allergic to every food (but non-fortified white rice and lean chicken/turkey) and drug I've ever tried and almost everything in my environment. Meh.

I reached that point in 2015 (that I had no safe foods left) and then slowly was able to eat rice, lamb, and sweet potatoes. I have no limitations now except that I continue to avoid all artificial food dyes.

Hopefully Rituxan pulls through for me and I dont need to try some real heavy duty chemo drugs.

I hope so, too, and keep us posted. I am in the process of figuring out when my first maintenance infusion of Ritux will be (and the very latest will be early Dec but it might be sooner). I did the blood work yesterday morning to see if my B-cells are still at zero.

 

[Blake2e]

I don't know that it is "bad" or dangerous but it would be extremely difficult on the body and I would not have been able to tolerate the sheer amount of fluid in such a short amount of time b/c I got third spacing (from MCAS). The closest interval I ever had between IVIG and Rituximab was about 2 weeks.

I think it should be fine. Rituxan is mostly saline in the bag and they say to drink a lot of water before IVIG so I think that should help. And if I find out its too rough I'll avoid making infusions days so close together in the future.
EDIT: Also I'm on a much lower dose than what you were on. I was doing 25g though my doc will be slowly increasing my dose with every month starting with my next one.

The anaphylaxis was horrible but my skin reactions were very infrequent and minimal. The only anaphylaxis reaction in which my entire body turned bright red and I got hives was to Yellow food dye #5 (Tartrazine) which I will avoid for the rest of my life. In every restaurant, I still have to ask if they use dye-free butter (and all my close friends and family know to ask as well).

I reached that point in 2015 (that I had no safe foods left) and then slowly was able to eat rice, lamb, and sweet potatoes. I have no limitations now except that I continue to avoid all artificial food dyes.

Really glad to hear stories of improvement and glad that things are going much more smoothly for you.

I hope so, too, and keep us posted. I am in the process of figuring out when my first maintenance infusion of Ritux will be (and the very latest will be early Dec but it might be sooner). I did the blood work yesterday morning to see if my B-cells are still at zero.

Thanks I'm considering starting a log on this forum.

So you said you had your 1st two infusions 14 days apart then you had infusions done once every 3 months for 12 months. How come the drs decided to have you have the Rituxan infusions every 3 months rather than the typical every 4-6 months? Were your B cells repopulating that fast?

 

[Gingergrrl]

EDIT: Also I'm on a much lower dose than what you were on. I was doing 25g though my doc will be slowly increasing my dose with every month starting with my next one.

My very first dose of IVIG (in July 2016) was only 24 grams and I slowly built up as well. My final dose where we stayed was 82 grams divided into a 3-day split dose (of 27.3 grams per day).

Really glad to hear stories of improvement and glad that things are going much more smoothly for you.

Thank you so much, Blake.

Thanks I'm considering starting a log on this forum.

I just saw your log and I think it will be very helpful (both for you to track things and for others to read in the future).

So you said you had your 1st two infusions 14 days apart then you had infusions done once every 3 months for 12 months. How come the drs decided to have you have the Rituxan infusions every 3 months rather than the typical every 4-6 months? Were your B cells repopulating that fast?

My doctor said that the Autoimmune Protocol involved doing the Ritux infusions every three months (after the initial starting dose which was Day 0 and Day 14) for the first year. I know there are many different protocols out there but this is the one that he felt was best for me. Whenever we checked my B cells they were always at zero. I recently did the Lymphocyte Subset Panel (to check B cells) and should have the results very soon. They will help to determine the interval for my first maintenance infusion (which at present is scheduled for exactly the 4-month interval).

 

[Blake2e]

My very first dose of IVIG (in July 2016) was only 24 grams and I slowly built up as well. My final dose where we stayed was 82 grams divided into a 3-day split dose (of 27.3 grams per day).

So you went up slowly too. How long did it take before you reached 82 grams? And at what dosage did it start to feel like it was helping your MCAS?

 

[Gingergrrl]

So you went up slowly too. How long did it take before you reached 82 grams? And at what dosage did it start to feel like it was helping your MCAS?

I did go up slowly and I started with 24 grams (in one infusion) in July 2016. If I remember correctly, we went as high as 36 grams in one infusion and then by Oct 2016 we began 55 grams (in a 2-day split dose). Then somewhere around Dec 2016, or possibly Jan 2017, we began the 82 grams in a 3-day split dose which I continued until we started to taper down in 2018.

I'd have to check my records for precise info but in 2018 we started stretching out the interval from every 3-wks to 4 wks, then 5, 6, 7 and ultimately every 8-wks. We also tapered it down from 82 grams back down to 55 grams. My final IVIG cycle (in July 2018) was 55 grams in a 2-day cycle at an 8-wk interval.

It helped my MCAS immediately although my very first IVIG infusion was an epic disaster b/c it was infused too quickly by the nurse, against doctor's orders. He had written that it was not to go above an infusion speed of 40 under any circumstances but she bumped it up to 105 without my knowledge. I ended up with the worst headache and intracranial pressure of my life that lasted for ten days until my ex-husband took me to the ER to see if I had aseptic meningitis (which they said I did not but I'll never know for sure). They did a cat scan of my brain (which was normal) and I was given IV Fentanyl and Decadron.

It is hard to remember anything positive from that first infusion but after that I NEVER went above a speed of 40 and never had that problem again. My MCAS reactions improved immediately and I never again had anaphylaxis or angiodema. I began adding foods until I no longer needed to follow the SIGHI (ultra low histamine diet) that I had religiously followed for 1.5 years prior to IVIG. It soon reached the point that I could eat (almost) anything and could eat in restaurants again after 1.5 yrs of not being able to eat in a restaurant! I could also tolerate perfume and smells again without any reaction. The improvement to MCAS was almost instant (whereas the improvements to my other medical problems took another 1-2 years and the addition of Rituximab to see a difference).

 

[ClaireKnowles]

My insurance approved Rituxan immediately. I had been on SubIgG for almost a year with initial improvement, then aggravation of my illness. I have 15 unconventional autoantibodies, CVID, neuroimmune disease, MCAS, Lyme, and basically AE (adult PANS/PANDAS with all positive Cunningham Panel).

I have Medicare with supplemental BC. I'm sure they were tired of paying for IgG. And, I'm hopeful that if I respond to Rituxan, it will be a cheaper, and longer term solution .

 

[Gingergrrl]

My insurance approved Rituxan immediately.

@ClaireKnowles I am still very behind with e-mails but was so curious if you ended up deciding to do Ritux and now I know the answer! I want to hear all about it soon.

I'm sure they were tired of paying for IgG. And, I'm hopeful that if I respond to Rituxan, it will be a cheaper, and longer term solution .

This was the philosophy that we used with my insurance, too, in mid 2017 (that IVIG was expensive and endless vs. Ritux was much cheaper and could potentially be a longer term solution and it worked)! It worked both with the insurance and put me into remission (the combo of IVIG & Ritux). I am going to write a summary of my most recent phone call w/our doc in my Ritux thread and will tag you there when I do (and do not want to take Blake's thread off track)!