Still doing great since Rituxan !

[Rebecca2z]

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.

 

[snowathlete]

thanks for updating us. So pleased to hear you are stil doing great!

 

[Marky90]

Wonderful! How many infusions have you had? Are you following the haukeland-protocol?

 

[Rebecca2z]

Hi @Marky90 , I had 4 rounds of RTX - once every week. Sorry I don't know what the haukeland-protocol is, so I can't answer that. ( I will google it ) My case is complicated, I was dx with CFS in the 80's and suffered with all the typical symptoms for over 30 years. In the last 5 years I presented with auto immune issues and we found out I have severe Ehlers Danlos, so which came first the EDS or CFS ...

I just know the RTX has allowed me to get out of bed and I am having a quality life with hardly any fatigue. My 'people', doctors and nurses are just shocked over my renewed health. I have been given a second chance at life.

I can't stress enough how important it is to me that others suffering with CFS will have the opportunity to get this or something like it. I believe so strongly that more can be done help people with CFS and I feel I am living proof.

 

[Marky90]

Hi @Marky90 , I had 4 rounds of RTX - once every week. Sorry I don't know what the haukeland-protocol is, so I can't answer that. ( I will google it ) My case is complicated, I was dx with CFS in the 80's and suffered with all the typical symptoms for over 30 years. In the last 5 years I presented with auto immune issues and we found out I have severe Ehlers Danlos, so which came first the EDS or CFS ...

I just know the RTX has allowed me to get out of bed and I am having a quality life with hardly any fatigue. My 'people', doctors and nurses are just shocked over my renewed health. I have been given a second chance at life.

I can't stress enough how important it is to me that others suffering with CFS will have the opportunity to get this or something like it. I believe so strongly that more can be done help people with CFS and I feel I am living proof.

I see Couldnt agree more! Im paying for it myself early 2016. Ive had it for only 2 years, but I dont see it curing itself, so really stoked to get rtx and hopefulle get well again!

 

[Riley]

I'm so happy for you that you have improved!

Thanks for keeping us updated!

 

[Rebecca2z]

Thank @Marky90 & @Riley , Glad you are going for it Marky90, I would pay for it if I had too to !
I will keep you updated. Everyday and I mean everyday and sometimes several times a day I say "I just can't believe how good I feel !" Don't give up !

 

[Sushi]

Don't give up !

Rebecca, you are an example to us--would you mind sharing how you kept your spirits up (or at least not too far down!) during some of the dark periods you have lived through with this illness?

 

[msf]

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.

 

[5150]

So good to hear a story about someone improving. Really hope it continues for you.

Re Rituximab: have heard it can affect kidneys / liver, due to its' powerful action.
Have you had those two followed by lab tests? Were your kidneys&liver functioning well prior to starting ?Did you stay the same or go up/down in functionality?

Thanks for taking the time to report on your program. I really appreciate that.

 

[shannah]

@Rebecca2z

Think about you from time to time and was wondering how you were doing. Happy to hear you're still doing well. Thanks for posting an update.

Blessings,
shannah

 

[ghosalb]

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

 

[Gingergrrl]

I had been thinking of you @Rebecca2z often and wondered how you were doing. So happy to hear the update!

Was curious about the changes to your autonomic system if you could share more in that regard? I think you had low BP and OI but can't remember if you had POTS or shortness of breath or used a wheelchair (prior to RTX.) What have you noticed autonomically (if you don't mind sharing of course!)

So happy to hear from you!!!

 

[Raines]

Thank you @Rebecca2z for keeping us updated and sharing your story. Rituximab is giving me real hope for the future.

My sister (who is a nurse) offered to steal me some, she was of course joking, but how I wish that wasn't a joke!

 

[funkyqueen]

@Rebecca2z I'm really happy for you , thanks for keeping us updated !

As for me, Rituximab still working,even if i do not answer as well as you , far of that..
The phrase of Professor @Jonathan Edwards resonates in my head: "... although we noticed that the Ritux worked less well on severe / very severe MEers " ...

However, for nothing in the world I do not regret having the incredible chance to follow this protocol
(you ask about what was the Haukeland's protocol, i do not remember exactly the study, but, i'm pretty sure, i have the same as Haukeland - i'm sure i receive 1gr for each infusions, but not sure for the time between each ones), so :
1gr at day O
1gr at day 14
1gr at week 12
1gr at week 24
1gr at week 40
and the last one at week 60

.and....i know i really do not want to talk publicly about what kind of symptoms are improved to me, thanks to Ritux, but i can say.. i share with you the sames ones that you told us ;-)

Like you, my greatest wish is that this drug can be accessible to all MEers...

Did you note any side effects to Rtx? In my case, thank God/or chance, very little: just my skin has become finer, (you know, like those who are under high doses of corticosteroids? but much less than tem) and I guess i can impute it to Ritux but is very light, and my doctor told me that was not an early dermatoporosis, so all is ok

@Raines , i'm really sad for you that you sister was joking :'(

 

[Raines]

@Raines , i'm really sad for you that you sister was joking :'(

No it was all in good fun, don't feel sad for me. I was talking about the drug she asked what it's name was, and then said oh I use that at work! And then we had a silly conversation about stealing it.

 

[funkyqueen]

I make no apology for steal, lol, far from it, but ... let's just say that ... in a case like this one, I'll should understand it

 

[Rebecca2z]

@Sushi,
I bet everyone is going 'ah jeez ....really sushi, you are asking queen of the long posts a question like that' !!! lol

When this CFS was first dx at UCLA and about 2 years down the road from that I was pretty angry. I punched my head through the wall, (twice) my hands and arms were too weak to punch so I used my head. (Losing control over my fate was freaking me out )

I was really pissed off that my life was now in bed, skinny ,fatigued, dazed and confused and even more furious that doctors didn't believe in this dx. It was all so overwhelming, I was only 30 years old and I wanted children
( thankfully I didn't have them) a career and I couldn't figure out how to get out of this mess. The more doctors I saw the more anguish it caused. So I stopped seeing doctors and if I did see one I sure as heck didn't mention CFS.

I watched the news as the Tahoe thing unfolded and I watched the 20/20 segment on CFS and was hopeful there would be an answer, help would be coming. Instead it just triggered even more scathing comments about "yuppie disease" .

I realized there was no support from doctors for what UCLA said I had, so I never mentioned it again. I never spoke of it with a doctor and still haven't 30 years later. (except here) I find that nothing makes me sicker then having a doctor dismiss me and my obvious condition.

( I have to add a little edit here, I did have few words with Dr. Montoya while at Stanford Hosp, about CFS, 2 years ago- I guess he some how knew a CFS patient was there )

I also learned telling a doctor I had CFS just stopped them from even looking into any other possibilities for my problems. Doctors are trained that if they hear hoofs they are horses not zebra's and that they will probably never see a zebra in their life. Oh Yah that really works for me... NOT !

All this realization just fortified my thinking about not seeing doctors and I became stronger mentally and learned chasing around some kind of dx for some weird designer disease was depressing, so I just stopped chasing it and I became accepting and happier.

Family and friends have been amazingly supportive, they could see I wasn't well and really helped me all through the years. Being sick has made me a horrible friend but I haven't lost any which is amazing to me.

All the struggles I have had since 30 years old just toughed me up I guess and with my current health issues I have the support of doctors so I don't feel tormented, and I have come to accept this is what it is. I appreciate the good days and don't worry about the bad ones. ( only because now I have some good days)

 

[Rebecca2z]

Hi @5150,
Thank you for your kind wishes.

I had my AST & ALT's checked once a week, all through the RTX treatment but not because of RTX, I was on a drug called Methotrexate, and this medication is famous for causing liver/kidney problems. Which it did and I am now off it. Right after the RTX treatments my doctor raised up the dose of MTX and my liver/ kidney values went through the roof. But the RTX did not raise my liver/kidney values.

( I had been on MTX over a year ago and it did the same thing to my liver/kidney values, doctor was hoping if we raised the dose up very very slowly I wouldn't have that problem but as soon as I go to 8 pills a week up they go.

On 6 pills I am fine- just can't do 8 and with 6 I wasn't getting relief from the joint pain- kind of a moot point now because the RTX took care of the joint pain !)

 

[Rebecca2z]

@shannah, thank you for this thoughtful post !