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Is Anyone Else Scared of Rituxan?

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Interesting thread. As I mentioned above, I wanted RTX because I was on deaths door, on feeding tube, complete autonomic failure - bedridden etc.. The last 5 years were horrid and getting worse almost by the minute. I have a very informed doctor at Stanford, he felt I had nothing to loose and everything to gain, that being said he (we) didn't know for sure this would do anything and for how long.

As far as making me worse, well that just couldn't happen, I was as bad as a person could be and still be alive. I wouldn't have done RTX 5 years ago, I had some quality of life at that time and I wouldn't risk getting worse.

The actual RTX infusion was easy peasy for me, especially the last 3. The first one I felt some gum burning, redness on chest and my throat got a bit tight feeling. They stopped the infusion right away. You are monitored through the whole thing.

The risk of PML, scared me ( still scares me ) the most in regards to having RTX. (Up to 92% of the adult population is JCV-seropositive) But I don't have HIV and 80% of reported PML patients have AIDS. I do have inflammatory issues, but not sure they are what you would call 'diseases' - ( Only 2% who have chronic inflammatory diseases get PML.) I was on myfortic for 2 years and it also has the risk for PML, I suppose there are many biologics that carry this risk.
The fact that PML is not easily treated and your a gonner in 2 months is scary. Plus I worry that I would be a even bigger burden for my husband. This all being said ~ I don't dwell on PML ~ as part of me believes that you can focus on things to the point that they actually manifest. Just wanted to let you know I did have some strong considerations in choosing to do RTX or not, mostly because of the risk of PML.

The other side effects didn't worry me so much because when you place them next to the kind of life I have been having they didn't look so bad .

Lets face it there needs to be a lot more research, before someone with ME would/should do this.

It's a good discussion to have !
 
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JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
@Rebecca2z, Thanks, as one of the few people on the forum that has actually undergone this treatment, your input is very valuable. The condition of your health sounds so dire that it makes sense to consider a treatment that might be seen as a drastic by some, including myself. Glad to see that it's been a positive experience for you.

Sounds like you were well informed before going through with it. I think this is a wise approach for anyone considering doing the same. Hopefully a pro-and-con public discussion, such as what we're having in this thread, can act in such a capacity.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Yes, thank you @Rebecca2z for your input. I'm not sure I would've made the same decision, but who knows. Anyway, I'm glad to hear the treatment has helped you.

Call me stupid, but what is PLM or PML? :)
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@JPV , I agree being informed is helpful, but I have to admit as I dug deeper into it things got pretty scary ! lol

I do question my future, talk about Uncharted Waters ! and I do have moments of wondering about future treatments and long term problems with short term benefits ect...
But my future was pretty 'ify' before RTX so I feel I am lucky to even have a future to worry about.

I am glad my point is clear about the quality of my life and the decision to do RTX. I think this is what each person has to figure out for themselves, at least until more research is done.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Yes, thank you @Rebecca2z for your input. I'm not sure I would've made the same decision, but who knows. Anyway, I'm glad to hear the treatment has helped you.

Call me stupid, but what is PLM or PML? :)


Hi @dannybex , not stupid question at all ! and it might help if I got the initials right every time ! lol

PML = Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin--the material that insulates nerve cells (neurons). Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses. The disease is rare and occurs in patients undergoing chronic corticosteroid or immunosuppressive therapy for organ transplant, or individuals with cancer (such as Hodgkin’s disease or lymphoma). Individuals with autoimmune conditions such as multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosis -- some of whom are treated with biological therapies that allow JC virus reactivation -- are at risk for PML as well.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Right, but how would you know that? Are the patients thoroughly screened for known infections? Many of us can't even get tested for these by our own doctors.
Yeah, I asked a similar question. Seems to me that I've also read a lot of discussions, on this forum, about how some infections are very difficult, if not impossible, to properly detect.

Also, wouldn't some sort of infection or pathogen be a component of any autoimmune condition? This must factor into all of this somehow, either as a chronic infection or a trigger event. Sounds like it could be awfully tricky to sort out.

Maybe Rituximab is just masking the autoimmune response while leaving a low grade chronic infection intact. If so, sounds like it could be a serious issue over the long term.

Does the part of the immune system that Rituximab shuts down ever become fully functional again? What sorts of things does it make you vulnerable to? If you get an infection, do you compensate with other drugs to make up for the part of your immune system that no longer functions? That's one of the biggest concerns that I have, even more than the (albeit rare) instances of PML or death.

With doctor's at a loss to explain how it even works, it all sounds very worrying to me.
 
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Misfit Toy

Senior Member
Messages
4,178
Location
USA
That is exactly the words I spoke "I'm dying, can't function at ALL" I was not scared to try it all, I jumped at it! I begged my doctor to hurry up get the treatment lined up. If he thought for one second this could improve my crappy little life I wanted it asap. But would I have done this drug before I got this bad ? NO !

Rebecca, I want you to know....I am so happy you have improved from Rituxan. I read your story and honestly, I would have tried it to. I think it's great and we all hope to learn so much through your journey with this medicine. Long may it last!
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
If you get an infection, do you compensate with other drugs to make up for the part of your immune system that no longer functions? That's one of the biggest concerns that I have, even more than the (albeit rare) instances of PML or death.

With doctor's at a loss to explain how it even works, it all sounds very worrying to me.

@JPV , Just a reminder, In my case I am currently on and have be on IVIG for 7-8 years, this has been life saving for infections. ( Except in the case of my chronic candida. ) I used to be on antibiotics all the time, I haven't had any since being on IVIG. This might be something for doctors to consider.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@JPV - I was just on Enbrel which is also a biologic like RTX, but not a chemo drug. However, all over the pamphlet or "book" that the doc gave me there were skull and crossbones (kidding) but yes, the black box of info on it and how it can cause lupus, cancer, active TB, MS, and infections to bacteria and yeast. Deadly infections. It was an extremely hard decision for me to make because I have CVID which means, I don't make enough igg which I should have IVIG, but IVIG and IGG makes me super sick. People with CVID shouldn't have enbrel without the IGG.

I did it anyway because my numbers are low normal, but not completely out of range, but still not good.

IF one gets an infection on the RTX or Enbrel, or Humira, or Methotrexate....they are supposed to stop the drug until the infection is cleared and then restart. The problem is...some infections don't go away on these drugs because they lower the immune system that much. In a person like me, that is a big issue. For Rebecca, she is on IVIG successfully, or SubQ and doing well.

So, yes. They do just what you said...they give you other meds to counteract what it is doing to you. Whether it be antibiotics, constant antifungals, etc. But many people are on a barrage of meds to counteract what could go wrong with these type of meds.

With Enbrel, some people develop Lupus from it and some develop MS. For some...it goes away, for others it doesn't. It's really quite scary.

And...yet I just took it. Just one shot. And now I have serum sickness and I almost think...maybe it was a blessing in disguise because I have found no one that can stay on Enbrel for more than a few years without some kind of "major downfall" or infection issue. Or...hair loss. Major hair loss, colds, bladder infections are huge and horrible pneumonia infections. Also, there are countless law suits against Enbrel because many develop cancer on it, or have lost a lung due to pneumonia.

But...they've got that black box to protect them and it helps many....until it doesn't help anymore.
 
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Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Rebecca2z ---which makes me so sad because I so couldn't take IVIG. UGH. I had serum sickness from that too and it affected my kidneys. Gosh, what is wrong with my messed up body! :grumpy:

You are able to handle more and I am so jealous and yet so happy it's working. I wanted it to work for me, but I haven't had an infection in a year, knock on wood. My numbers for now are in the upper 700's.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@Misfit Toy, thank you for your post. I plan on reporting the good, bad & the ugly. lol

If I die my husband has been instructed to come in here and let you all know. I truly hope I have a few years before
something like that happens, but I do want to keep it real.

I know for now I am enjoying life so much more.
We have a 3 day trip planned to the coast and I can't wait to hear the ocean and run in the sand with my golden ret.

This is something I have been waiting to do for 5 years ! I have been listening to the ocean on my computer and now I will be able to see it, taste it, smell it and touch it ~ I am really enjoying this second chance at being out and about ...how ever long it lasts !
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Rebecca2z -my friend...I am rejoicing for you! I really am. Take a picture and put it up on PR with your dog. I am so happy. You are a remarkable person and you, we all deserve this.

Also, I think the same thing..if anything happens to me, I will need to let people know on here that something is up. I have been thinking about that...that if I should die, or whatever, I need a person to let others know.

What a horrible thing to think about, but like you said...REAL. Keeping it real.

Enjoy those waves...I am excited for you. I think the ocean heals me. I will try and make it to the Jersey shore this summer for the sand and surf. Love it. :fish::fish::fish:
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@Misfit Toy , yes I think I remember you saying you couldn't do IVIG. A lot of people experience the problems you had, many can't tolerate IVIG, I had major issues for the first year but stuck with it and now I don't have any issues. Did you try the different brands ? I went through 3 different brands until I found one that was agreeable. I use Gamunex C.

I am thrilled to hear you have been infection free for a year though, awesome ! What are you contributing that to ?
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@Misfit Toy,

Thanks for your kind post and being excited for me. That really means a lot. We are going for 3 days only, (TPN is still part of my life, although I do have one day off now and a lower dose, thank you RTX ! ) We leave on June 8th, come back on the 10th .

I hope you can make the Jersey shore. I will take pics, and you do the same ok ? ;)
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Rebecca2z -the first thing I tried was privigen. I had horrible non stop diarrhea and I was dehydrated, sweating and migraine. Then, Hizentra...OMG. Just shoot me on that one. I was so sick I had to go to the ER. I could not even breathe. My heart was at 130 beats per minute. They had to give me heart meds and saline.

I then tried Gammaguard. First time...a charm. 2nd time...not too bad. 3rd time...major allergic reaction and hives everywhere. This was with IV fluids and benadryl. 4th time, throat closed up and I couldn't even take all of it. I had delayed reactions and I was totally bedridden.

My kidneys were really high in their numbers. I had an all over body rash and I was living on prednisone and benadryl. It was hard for me to take a shower.

I went to a specialist and he said..."so in five months you didn't feel better at all?" Nope, was my answer and 4 months on it, I had walking pneumonia.

I have thought about trying subq or gammunex C. But...since I have not had an infection and I also have been around sick people...I have said, why bother?

But with these rheumatic meds, which I need due to my connective tissue disease....I sort of feel like at some point, I will need to pursue it again.

SubQ has been brought up again. I have lymphopenia, too. Which is even worse than the igg problem. My numbers are baffling and I think I may go to another immuno who will get in touch with the NIH.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@Rebecca2z -I will!! What is TPN?

TPN = total parenteral nutrition or AKA The dreaded feeding tube.
Wow what an awful time you have had with IVIG. I agree shoot me on the Hizentra, I did just awful on that one too. I can't do sub q - but tried it for a about a year.

I now have a port for the IVIG and I have a second central line in my arm for TPN, I have a stomach that has no motility so the central line delivers the TPN in a vein in my arm, (picc line)

I have to say the RTX has made some noticeable changes in my motility issues. I hope to get off the TPN or at the very least cut it down to 3 days a week. I have gained 10 pounds since the RTX kicked in. ( so happy about this )

I think in your case IVIG is not for you, that is pretty scary what you went through. Wow your IGG #'s are pretty low. I am happy to hear you have been infection free, but with that low IGG, RTX would be pretty risky in your case.

You have a great attitude considering the hell you have been through.
It's great you are willing to share, this is helpful for many people I am sure.

I am very happy you are here !
 
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deleder2k

Senior Member
Messages
1,129
Yeah, I asked a similar question. Seems to me that I've also read a lot of discussions, on this forum, about how some infections are very difficult, if not impossible, to properly detect.

Also, wouldn't some sort of infection or pathogen be a component of any autoimmune condition? This must factor into all of this somehow, either as a chronic infection or a trigger event. Sounds like it could be awfully tricky to sort out.

Maybe Rituximab is just masking the autoimmune response while leaving a low grade chronic infection intact. If so, sounds like it could be a serious issue over the long term.

Does the part of the immune system that Rituximab shuts down ever become fully functional again? What sorts of things does it make you vulnerable to? If you get an infection, do you compensate with other drugs to make up for the part of your immune system that no longer functions? That's one of the biggest concerns that I have, even more than the (albeit rare) instances of PML or death.

With doctor's at a loss to explain how it even works, it all sounds very worrying to me.


If you stop Rituximab, B-cells will return within months.


This baffles me. Being one so skeptical against it I thought you had read something about what Rituximab is and what it really does. If you would then I guess your view on it would change.

In fact we do have an excellent doctor here that has written numerous of posts about Rituximab works - and I am sure he gladly will answer your questions. Tag professor @Jonathan Edwards from UCL, UK, with your questions.