I had Rituxan and I feel amazing

[Rebecca2z]

Yeah, that's the trick, the very thing I am unable to take...IVIG. I know it's a lifesaver for most and the very thing that put my life in danger.

@Misfit Toy , Hi again, Sorry to hear IVIG was a nightmare for you. I think many have experienced that. I was on many brands and tried sub . I have had Aseptic meningitis at least 4 times with it. This is one of the worst headaches you could ever have. I had a spinal leak once and the AM is the exact same kind of pain. So I hear you on how nasty this stuff can be.
What works for me in regards to the AM is that I must hydrate 2 days in advance and during the infusion. I had hives all over my body on and off for years from IVIG.
IVIG used to made me so sleepy for weeks on end. I just kept switching until I found what had the least side effects. I actually went through a lot of hell getting my body to accept this stuff. Now I don't even pre-med with it. I am truly sorry it wasn't right for you. I don't think the IVIG makes the Rituxan work, and maybe it even counters it in some. So I truly hope you can get something to help you. But not IVIG !!

 

[Misfit Toy]

@Rebecca2z -I can't believe you went through all of that and stuck it out with IVIG. I was better before the IVIG. I was like you. I had hives and a rash everywhere. Like you, all I wanted to do was sleep. I would read these posts of people feeling energized and I couldn't get out of bed to go to the bathroom. That is not like me. At all. When my blood tests came out nutso, I went to an immunologist who used to be the head CVID doctor in Philadelphia. He was a spokesperson for CVID and he was the one who pulled me off it. He saw the rash, the bloodwork, etc and was like...no, this shouldn't be doing this. You should feel somewhat better not worse. Igg made me so depressed. I felt delirious on it. Mental. I would react to everything and sit in bed for hours and cry. My pain went through the roof on it.

Anyway, my IGG levels are in the 700's. I failed the vaccine challenge, but I have not had a major infection in awhile. Since last June. I had an infection in December but it was tolerable.

He is actually more concerned because my lympocytes are so low. I have idiopathic lymphopenia. He is worried about that. I used to live in San Francisco and I would go to a hematologist at Stanford and she was upset about my lymphocytes years ago.

Since by the grace of God I have not had a major infection, I am to stay off of it for now. Maybe that will have to change, but honestly, I am so scared of doing it again. If I have that kind of fatigue, migraines and pain...the pain...and "psycho" like effect....just shoot me. I will take the infections! I think it's great though, the new way. We had talked of doing it every day at one point instead of just once a month. That whole month I would be sick.

I know about the aseptic meningitis because many have that from IVIG.

Anyway, to you staying better and getting back to a life! I will be following this and please keep us posted.

 

[Daffodil]

@Rebecca2z
Thank you for bringing your story here regarding treatment that is working for you. I hope you have continued good health.
Do you have insurance to help pay for this? Bob is in the UK and he and others would likely have to go out of the country to find someone who could do this treatment. Kenny DeMeirleir in Belgium offers treatments but I don't know if he offers Rituximab.

I'm in Canada and even with insurance there is (presently) no where to go for this type of treatment. Hopefully that will change as stories like yours become known and as others with access try it along with the clinical trials perhaps it will be seen as an effective option among the general medical providers.

hi snow. there is a woman in british columbia (i think) who got the government to pay for her rituxan. she traveled to the USA to get it and was seeing kogelnik.

i understand that it didn't help her. she used to write a blog but i think stopped because i think some people were harassing dr. kogelnik and saying he should lose his license for trying these things on CFS patients, etc.

rebecca...i really feel your joy when i read your post and i share in it. how awesome! and love what you said about living in the moment and not looking back. that is very hard but must be done.

 

[Misfit Toy]

@Daffodil -I remember that. Her pain was so much worse from the drug. A major argument took place on that thread. It was a shame.

 

[Snowdrop]

hi snow. there is a woman in british columbia (i think) who got the government to pay for her rituxan.

If only I'd known and understood these things a decade ago. I lived in BC for a decade and when I was still able to get out.
Since government health payments are by province it's of course not clear that Ontario would ante up but I also would not be able to travel that far either. Not getting any benefits from the treatment would be a real bummer given the effort it would take.

 

[Daffodil]

If only I'd known and understood these things a decade ago. I lived in BC for a decade and when I was still able to get out.
Since government health payments are by province it's of course not clear that Ontario would ante up but I also would not be able to travel that far either. Not getting any benefits from the treatment would be a real bummer given the effort it would take.

hi snow. i am not sure anyone was doing rituxan a decade ago.

i am in ontario and i can tell you that its worse here than in BC...i can't see them paying for it here.