Still doing great since Rituxan !

[Rebecca2z]

Rebecca....can't thank you enough for sharing your experience with Rituxan....so many of us are waiting for any good news with this treatment....so very happy that it is working for you....keep praying for your continued recovery.

Is this treatment anyway connected to what OMI is doing ? And who are eligible for this treatment and how much it cost ? Thank you

@ghosalb, Thank you for the prayers ! I hope my experience can help someone ! My treatment was not connected to OMI and what they are doing. I believe the cost to my insurance was 45 grand, but I am not sure if all the bills have even come in yet.

My share 30 bucks !! I know it's a whole different ballgame when the doctors orders this up ! That is why I am so hoping the research shows this helps and insurance can cover it for those who need it.

 

[Rebecca2z]

Hi @Gingergrrl,
Well I am very shocked and confused about the state of my autonomic system, which was pretty compromised. I had 2-3 hours of neurology tests and they were all abnormal, couldn't sweat, very low BP, small fiber neuropathy, erythromelagia, tachycardia and breathing problems. All of that is much much better.

I could hardly walk due to the pain in my feet, I could sit and stand after getting the Northera and I am still on 6 pills a day but I am pretty sure I need to cut that dose in half or even go off it. (I need to see my neurologist.) BP too high now.

My burning in the feet has stopped. :0 In fact now my feet are freezing cold. I am scared to make changes as I wonder if the RTX is going to wear off in Dec and will I get a positive response to it again, so I have been hesitant to make changes. I just kind of put myself in a holding pattern. But seriously the improvement in my autonomic system is just amazing.

I am also seeing some improvements in my dysmotility but I am still on a feeding tube, which makes me think the Ehlers Danlos is responsible for the GI issues and not so much the autonomic system. Kinda still trying to figure this all out. But for sure there are improvements and less drugs are required.

Thank you for being happy for me, I need to catch up and see how YOU are doing - hopefully holding your own at the very least.

 

[geraldt52]

I'd like to add my thanks to all the others', for all you have shared with us @Rebecca2z. It truly helps just to imagine that there is light somewhere in the tunnel.

My memory (not good) is that some time ago you said that you were going to share your information, or maybe even your files, with either the OMI or the CFS group at Stanford. Am I right in that, and did whoever it was ever respond to you? You are such a wealth of information that I just can't imagine that all that has transpired with you wouldn't be of great use to someone. I would hope that your doctors are sharing it, but I don't know that you/we can count on that.

 

[Rebecca2z]

Hi @Raines,
Oh I would have a hard time with that one for sure ! But seriously the treatment needs to be done with the right team in place.
Kinda a risky drug.

I say that and then I read all the side effects of the RA drugs my sister is on and the ones they have already tried on her and
I am so surprised there is not much hesitation on the part of her doctors to try her on all these new and very dangerous RA drugs.

Wow have you read the side effects of those things. Pretty scary. But she has been tried on about 5 different ones and each one
scarier than the last one. Bewildering !

Anyway hang on to that hope, I am sure your day is coming !

 

[Rebecca2z]

Congratulations! I am really happy that it worked for you, it´s great that Ritux can help those who are bedbound. I hope the next one will help you improve further.

Thank You so much @msf - hopefully I won't be the only bedridden person to have a response !

 

[Rebecca2z]

I'd like to add my thanks to all the others', for all you have shared with us @Rebecca2z. It truly helps just to imagine that there is light somewhere in the tunnel.

My memory (not good) is that some time ago you said that you were going to share your information, or maybe even your files, with either the OMI or the CFS group at Stanford. Am I right in that, and did whoever it was ever respond to you? You are such a wealth of information that I just can't imagine that all that has transpired with you wouldn't be of great use to someone. I would hope that your doctors are sharing it, but I don't know that you/we can count on that.

Yes @geraldt52 you have a pretty good memory, I was going to send some info to Dr. Montoya, I didn't because at that time I realized all the benefits were from all those steroids and wanted to wait to be sure the RTX actually did help me. Thank you for bringing this up, I think I should do it now ! Not sure it will be worth much but I think I should do it for sure.

 

[Rebecca2z]

@funkyqueen , I am so happy to hear from you and that you have gotten a positive response. That is just excellent news !!

I don't know about you but some of my joy is drowned out because so many of our friends in here are suffering, scared and worried. I feel a responsibility to share my experience and the positive benefits I feel from RTX.

I am better, I have the strength to be their voice and when they are better they will add their voice to ours and so it goes until everyone is getting some help.

I haven't had any ill effects ( I already have very thin skin anyway due to Eherls Danlos) from the RTX, this is not say I can't or won't have them down the road.

Like my sister who is on a hard core RA infusion every 30 days, she could have ill effects down the road too, but the trade off is she having a pain free life.

I am just so thrilled you are feeling better and happy you are sharing your journey on any level.
Keep us posted !

 

[geraldt52]

Yes @geraldt52 you have a pretty good memory, I was going to send some info to Dr. Montoya, I didn't because at that time I realized all the benefits were from all those steroids and wanted to wait to be sure the RTX actually did help me. Thank you for bringing this up, I think I should do it now ! Not sure it will be worth much but I think I should do it for sure.

I think Dr. Montoya is a very good choice. He seems to be a curious person, in a good way, and seems to be in contact with all the main players, so could sort out what might be of interest to whom. I would think he would be ecstatic to have such a wealth of information fall in his lap.

 

[Rebecca2z]

@geraldt52 , thanks for the encouragement ! I picked Dr. Montoya because he came to see me while I was in hospital and he was very kind, I remember he said , My gosh you really have been down a long and rough road" he asked me how have you done it.

First doctor to EVER treat me this kindly while taking about CFS !

 

[Gingergrrl]

Hi @Gingergrrl,
Well I am very shocked and confused about the state of my autonomic system, which was pretty compromised. I had 2-3 hours of neurology tests and they were all abnormal, couldn't sweat, very low BP, small fiber neuropathy, erythromelagia, tachycardia and breathing problems. All of that is much much better.

I could hardly walk due to the pain in my feet, I could sit and stand after getting the Northera and I am still on 6 pills a day but I am pretty sure I need to cut that dose in half or even go off it. (I need to see my neurologist.) BP too high now.

My burning in the feet has stopped. :0 In fact now my feet are freezing cold. I am scared to make changes as I wonder if the RTX is going to wear off in Dec and will I get a positive response to it again, so I have been hesitant to make changes. I just kind of put myself in a holding pattern. But seriously the improvement in my autonomic system is just amazing.

I am also seeing some improvements in my dysmotility but I am still on a feeding tube, which makes me think the Ehlers Danlos is responsible for the GI issues and not so much the autonomic system. Kinda still trying to figure this all out. But for sure there are improvements and less drugs are required.

Thank you for being happy for me, I need to catch up and see how YOU are doing - hopefully holding your own at the very least.

Thank you, @Rebecca2z for your detailed responses to me and everyone else and I really appreciate it. I admire that you never gave up for 30 years and it is a true inspiration. My situation is a little different than yours and I am wavering every day whether there is a treatment that can help me or if I need to stop going in circles with things that are not working or making me worse. I had many different triggers of my illness and hard for me to sort out what is due to what. Thank you for asking!

 

[Rebecca2z]

Thank you, @Rebecca2z for your detailed responses to me and everyone else and I really appreciate it. I admire that you never gave up for 30 years and it is a true inspiration. My situation is a little different than yours and I am wavering every day whether there is a treatment that can help me or if I need to stop going in circles with things that are not working or making me worse. I had many different triggers of my illness and hard for me to sort out what is due to what. Thank you for asking!

@Gingergrrl I am sorry you haven't found something to calm down the MC issues you are having and really I hope you continue to search for something that would at the very least calm things down. You are such a great support here at PR, and I am grateful to your help on my path to recovery. I remain hopeful there are treatments that will address your issues.

 

[Gingergrrl]

@Gingergrrl I am sorry you haven't found something to calm down the MC issues you are having and really I hope you continue to search for something that would at the very least calm things down. You are such a great support here at PR, and I am grateful to your help on my path to recovery. I remain hopeful there are treatments that will address your issues.

Thanks @Rebecca2z and actually my MCAS is about the only thing that is better and other stuff is much worse (breathing, autonomic dysfunction, muscle weakness, pinched nerve and increased pain, etc.) plus dealing with the aftermath of living with toxic mold for 2-3 yrs. It's a long story and I wanted to reply b/c you asked and you are such a kind soul but I don't want to derail your thread which is about YOU.

 

[Rebecca2z]

@Gingergrrl, Don't worry about "derailing" this thread, it isn't about me it's about all of us. I don't get upset in the least and we are comparing our health issues.

I am really sorry to hear about all that is going on with you. If you haven't gone through autonomic dysfunction you don't know what real suffering is about, in MHO. I thought I knew suffering but when that autonomic stuff came on board I was devastated, it sucks the life right out of you.

OMG now you're dealing with toxic mold, I know you must be about as low as a person can go. For this I am very sorry, I hope you can find something to at the very least take away the pain.

I wish I had something that would take you out of the nightmare, I hope you have a neurologist helping with the autonomic issues - like something for BP. Just getting a BP with Northera brought me out of a very dark place.
My BIL is very ill from black mold and is having a hard time getting treatment. He is living rural and not many doctors know what to do with him.

Sending hugs - keep fighting- keep swimming !!

 

[Gingergrrl]

Thanks Rebecca and you are truly so kind to respond to all our questions (and if I ever find anything that gets me better, I will do the same!)

And yes the autonomic dysfunction and mold toxicity have been hell but we are in a new place as of 3-4 weeks ago and hoping as my MCAS improves that I can actually tolerate some of the mold treatments.

I don't take Northera but Midodrine is the only thing so far that helps my extreme shortness of breath.

Am very sorry to hear about your bro-in-law and black mold exposure. It was bad and we were displaced for six months and lost everything we owned.

Sending hugs back at you

 

[Rebecca2z]

@Gingergrrl, I just wanted to say I know it must be hard to post when feeling so awful but thanks for explaining what is going on. Glad you are in a new place and I just know things are going to get better for you and your family now.

 

[Gingergrrl]

@Gingergrrl, I just wanted to say I know it must be hard to post when feeling so awful but thanks for explaining what is going on. Glad you are in a new place and I just know things are going to get better for you and your family now.

From your mouth to God's ears LOL. Thank you and you, too!

 

[bthompsonjr1993]

I posted this response to a question from @Hip - just not sure where that post went ...lol

I am very happy to say I am still feeling amazing, I am able to do many things I couldn't do before. Like getting dressed everyday ! I am not perfect but I am so much better. I would do RTX again. In fact when my blood work shows that the B-cells have returned I will do one round of RTX. We check my B-cells every 3 months.

The improvement in my mental clarity, fatigue, joint pain and functioning of my autonomic system I would say are the most notable. I have issues with Ehlers Danlos and the RTX can't fix those but I am very grateful to have this level of quality of life back.

I am still on a feeding tube which I wish wasn't the case, it is believed the EDS is causing the GI issues. I do feel though the RTX has helped my stomach, bowel and swallowing to some degree. I remain hopeful I can get off the feeding tube, and will be attempting to do so in the coming days.

Hi Rebecca, congratulations on your progress, I am so happy for you, and your story gives me so much hope. Just out of curiosity, how long has it been since your first infusion of rituximab, and how long have you been experiencing these positive results for? Thanks for your time, and good luck with your treatment, I wish you continued good health!

 

[bthompsonjr1993]

@geraldt52 , thanks for the encouragement ! I picked Dr. Montoya because he came to see me while I was in hospital and he was very kind, I remember he said , My gosh you really have been down a long and rough road" he asked me how have you done it.

First doctor to EVER treat me this kindly while taking about CFS !

Hi Rebecca, I was lucky enough to get in to see Dr. Montoya a month ago and he was so kind, it was as if I was his own child. Never have I met anyone with so much sympathy or understanding for what I am going through. At one point when describing my symptoms I got emotional and teared up and he literally hugged me and got me a box of tissues and just told me he was so sorry for what I have to go through and will do everything he can to fix me. The man is a saint, and one of the greatest advocates for PWME in the world. Which is why I think you should DEFINITELY send him that info about your recovery on rituximab. I am sure he would love to read about it, both because he would love to hear about a patient recovering and because he is one of the most influential CFS researchers in the world. If you could even just make it so treatment with rituximab is something that is on his radar I think that could do a lot of good for a lot of people!

 

[Rebecca2z]

@bctjr1993 - Thank you for your kind wishes ! My first dose of RTX was given on Feb 23 ,2015.

On April 30,2015 I began to feel some little improvements.

By May 7, 2015 I really felt a relief in my joint pain, fatigue and brain fog. In June and July of this year I felt even way more improvements, the brain fog and fatigue is much much better and I especially noticed I have less burning in my feet and my ability to have a decent blood pressure has improved. (I am on less medications ) !

I don't have notes all over the house to remind me of things anymore, I am actually doing my own cleaning and organizing, my poor cleaning lady is out of a job !

I still struggle with being able to do several things in one day without feeling drained. I compare myself with my peers that are my age or are a bit older and I see they can do more without feeling wiped out. So I am not perfect but I am not bedridden as I was so you see any tiny improvement for me is pretty huge.

Like getting dressed everyday and fixing my hair, doing make up and having the desire put on my earrings are all very big markers of improvements for me. I don't think I got dressed in real jeans or put on earrings for years and now I am doing those things. I used to get dressed up for photo's when my family came to visit and I would be so wiped out from doing that I would have to go back to bed after the photo.

This year when my family came and we did photo's I was laughing and had lots of energy! (See attached photo, my brother said he was fat and I had to show he wasn't. My siblings come every year and this was the first year in a very long time I actually had fun !

Of course I wonder how long will this last, when do I get a maintenance dose and will it work again. I wonder will I have bad side effects down the road, but I am just taking each day as it comes.

Thank you for sharing your experience with Dr. Montoya, that is awesome you got to see him and thanks to you I am even more committed to contacting him. ( putting something together this week. )

 

[Rebecca2z]

Just a side note here about my health situation, I was dx in the 80 with CFS and I was bedridden for 10 years. I had slight improvements in the CFS after the ten years, but still had all the struggles that anyone with CFS has.

Five years ago some autoimmune issues like discoid lupus popped up, with some doctors thinking that maybe I have systemic lupus but that the IVIG I do every 2 weeks skews the blood work.

I believe that the autonomic issues and the discoid lupus on top of the CFS is what put me on deaths door. It was just too much, too much inflammation or something. The RTX addressed this and viola I feel better.