Rituxan Update

[Rebecca2z]

@EtherSpin, thank you for your comments about my post about "raving about my new found health"
I guess I was thinking back when I was crawling around on the floor because I had no BP , and I was unable to hold myself up when it so hot out and i was on a feeding tube going down hill fast and I would read in forums how someone was doing better and sometimes those posts would make me whine, depressed and just wonder why I couldn't get help. So I am always aware that there might be others like that.. I am always happy when others feel better but sometimes it could make me feel both hope and feelings of hopelessness.
But I feel my sharing (without over sharing) my progress could help others decide if Rituxan is right for rhem.

 

[Sushi]

I am always happy when others feel better but sometimes it could make me feel both hope and feelings of hopelessness.
But I feel my sharing (without over sharing) my progress could help others decide if Rituxan is right for rhem.

I find that your posts give a lot of hope. Whether or not we are good candidates for Rituxan, just knowing that "one of the gang" is doing so much better is inspiring--it shows that there are answers, they just have to be found. I don't think of it not as "Oh, why not me?" but rather, "Me next!"

 

[Rebecca2z]

I for sure @Sushi should have been chatting with you when I got all cry baby about 'why not me" your head is on straight for sure... I like it
"Me Next". Lol

 

[geraldt52]

...I feel my sharing (without over sharing) my progress could help others decide if Rituxan is right for them...

Exactly, Rebecca2z. You are in a quite unique position to shed light on things that many of us are wondering about, as we sit and wait for results out of Mella and Fluge. I'm always excited when I first see that you've posted again. I honestly can't imagine that you're annoying anyone by sharing.

I'm very happy that you've rebounded with follow-up Rituxan infusions. That would seem to leave little doubt of the mechanism at work.

 

[Ecoclimber]

I for sure @Sushi should have been chatting with you when I got all cry baby about 'why not me" your head is on straight for sure... I like it
"Me Next". Lol

I can say and prrobably on behalf of the patient community as well that I have always appreciated when you take the time to come back on here to give us an update on your progress!

Please don't overdue which we all have done. Stay within your energy envelope. There is still a a lot to learned concerning Rituxan in treating ME/CFS. Much apprecitated!

Thx,
Eco

edited: for sp mistakes..sheesh

 

[Rebecca2z]

Awe- thank you @geraldt52 !!!

 

[Rebecca2z]

@Ecoclimber thank you for your kind post!
I appreciate the support you all give.
I am so bad about not over doing it- it is so hard to rein myself in after being bedridden for so many years.. I appreciate the reminder!

 

[daisybell]

That's great about having monthly bloods to check your B cell levels... So pleased for you that the rituximab is working so well!

 

[Rebecca2z]

@daisybell thank you for your kind post. I am very pleased that I will have monthly checks so I don't bottom out again.

 

[IreneF]

It's so wonderful to hear this.

 

[Rebecca2z]

Awesome!! Had been thinking of you after your last thread - wonderful to hear youre better again.

Aren't you getting RTX sometime in the near future? Or am I thinking of someone else .. I need to spend time in catching up with what you all are doing!!

 

[Sallyagerharris]

Hi Rebecca. So so happy to see your update and progress. I'm lucky in that I just have ME and have massive admiration in you coping with so much more. Fantastic that you will be able to see your parents, they must be excited as well.

It must be huge coming off the feeding tube, as I cannot imagine how difficult it must have been. Although it is certainly amazing in how far you have come. I like others am extremely grateful for your updates.

I'm lucky enough to be on a very slightly better level. Bed bound 3-4 days a week but able to do just a bit more so enjoying those moments.

Take great care and I'll look forward to your future updates.

Sally xx

 

[Rebecca2z]

Hello @Sallyagerharris - My hope for you and others is to not have any bed bound days- I know how hard it is to live like that. Thank you for your kind post.

Yes my parents are thrilled that I am going to come see them, they are in their middle 80's, I wanted to see them 5 years ago but that is when my health took a downward turn. But it seems that is all in the past and I am able to move forward.

Oh happy days are here again !!

 

[kangaSue]

I'm a non-CFS member just looking for answers to my chronic G.I.dysmotility problems which is starting to look like an autoimmune thing and I have had reason to get my hopes up that there might be an effective treatment in rituximab after seeing several accounts similar to yours where RTX was able to restore a lot of the G.I. function impairment.

I share a lot of g.i.symptoms with you, slow stomach emptying and lower g.i. motility which required a feeding tube along with low b.p. and several failings in a recent Autonomic Function Test panel. Mine has been slowly progressive starting out as Idiopathic Gastroparesis 15 years ago which I'm now looking into being caused by Autoimmune Gastrointestinal Dysmotility or, as can occur with a rapid onset, Autoimmune Autonomic Ganglionopathy and that is known to occur in some with EDS.

You didn't sound sure in your answer to the POTS question, I was wondering if you get tachycardia on standing or do you just have the same problem as I do, a low b.p. problem and it is hard to get the b.p. up.

Have you tried prednisone or hydrocortisone along the way, what effect do they have on your b.p. It's supposed to increase your b.p. but even a small dose drops mine down to a level of feeling faint with it.

 

[Gingergrrl]

Oh happy days are here again !!

Rebecca, I am so happy you will get to visit your parents and am so sorry I missed you at Stanford. I plan to respond to PM's tomorrow but am hoping I will get to meet you at a future trip. Am glad the feeding tube infection is fixed and from catching up on this thread it sounds like you don't need it any more which is more great news! You deserve all these great things coming your way and more!

 

[perrier]

Rebecca, my heart flutters when I see you've posted. My dearest daughter is very ill with Me/cfs. Things arę not going well, despite all sorts of attempts. Hearing your story gives me great hope. Thanks

 

[Marky90]

Aren't you getting RTX sometime in the near future? Or am I thinking of someone else .. I need to spend time in catching up with what you all are doing!!

Thats right! In 1 month.. I`ll keep you posted

 

[bertiedog]

@rebecca1995 Congratulations on your great response to Rutuxi. I was wondering as somebody who also has had orthostatic intolerance for the past 10 years or so, did you ever try Fludrocortisone and/or a low dose beta blocker and if so did you gain any benefits? I also have poor motility and bowel issues but they have improved after a course of Rimfaxamin and taking my own Kefir daily. I haven't noticed any other benefits in my health though from this just that my gut is a lot more comfortable.

Generally I don't need Fludro just from time to time but do need the beta blocker daily especially before getting out of bed and doing anything much. I have had the bp on the floor, it was very frightening but mine was so bad I needed a daily steroid and that has helped me hugely but I still have lots of other ME symptoms. It's great that you are getting such O I benefits from the treatment. I hope you have a great time with your parents.

Pam

 

[Rebecca2z]

@kangaSue, So sorry to read about your issues which are very similar to mine. The GI problems are life changing. I didn't expect to see all the positive changes in my autonomic system that I have seen from the Rituxan. I still struggle with eating, but I am off that feeding tube and hope to never get back on it. I know I have to work very hard at eating many times every day. I can take in liquids pretty good and mostly survive on Orgain ( similar to Ensure)

As far at POTS, yes I believe I have that but for some reason Stanford doesn't use that name, they called my problem autonomic failure. But it is POTS. Yes I have been on prednisone for years and maybe without that my BP would have been even worse.

I do have tachycardia and when I go to the ER they always make a big deal out of that. I take a drug called Northera for low BP and it works fantastic.
BUT now with the RTX on board I hardly need it. Before RTX my BP dropped upon standing, sitting and laying down it is low but standing was the problem. It drops and keeps dropping until I fall to the floor. I struggled with that not knowing what it was for 4 years.

I also had terrible small fiber neuropathy and very disabling Erythromelalgia ( burning of the feet) All that burning and numbness in my feet and hands is gone since doing RTX. The burning in my feet had me almost wheelchair bound. So life is amazing now that I can walk and wear shoes & socks again. See attached photo of my burning feet.

The RTX is a total miracle for neuopathy- at least for me. All the neuropathy and GI issues started 4 years ago and hit me out of the blue. I have never had any of those kinds of problems before.

The Northera is amazing for low blood pressure, it totally changed my life, but now with RTX I am 1/2 of what I have been taking and I believe I could go without it but will tall to my doctor about that first. Have you tried anything other than prednisone for low BP ?

I hope you can address your GI issues, I couldn't take any of the motility drugs for which there are only 2 or 3. Reglan is a great motility drug but has a side effect of seizures and I can't take it. Erythromycin is also a good motility drug but only works for about 3 months. Other than those there isn't anything else. The bowel motility is a problem but I am having pretty good luck with magnesium supplements helping in that area. The one natural remedy that seems to work !!

Wishing you the best and I am here if I can help !

 

[Rebecca2z]

@rebecca1995 Congratulations on your great response to Rutuxi. I was wondering as somebody who also has had orthostatic intolerance for the past 10 years or so, did you ever try Fludrocortisone and/or a low dose beta blocker and if so did you gain any benefits? I also have poor motility and bowel issues but they have improved after a course of Rimfaxamin and taking my own Kefir daily. I haven't noticed any other benefits in my health though from this just that my gut is a lot more comfortable.

Generally I don't need Fludro just from time to time but do need the beta blocker daily especially before getting out of bed and doing anything much. I have had the bp on the floor, it was very frightening but mine was so bad I needed a daily steroid and that has helped me hugely but I still have lots of other ME symptoms. It's great that you are getting such O I benefits from the treatment. I hope you have a great time with your parents.

Pam

Aww thanks @bertiedog for your thoughtful post ! Yes I was on Fludrocortisone and I had terrible side effects so the doctor put me on something called Northera for low BP and it works awesome with no side effects. Very expensive drug, 200 hundred bucks a pill and I had to take 6 pills a day ! Now I am on 1/2 that and will speaking to my doctor about getting off it. The RTX had improved this low BP dramatically.
That is great you are having improvements in your motility from Rimfaxamin and the kefir. I have luck with taking Magnesium supplements for the bowel motility problems. So great when something natural actually works huh !

Sorry about all your ME struggles, I have my fingers crossed ( and toes too) that some of the new research comes up with treatments that can at the very least make improvements in the lives of people with ME. (Of course a cure would be awesome but I am sure everyone would be thrilled with just improvements.)