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Is there any way I can be treated with rituximab privately?

Gingergrrl

Senior Member
Messages
16,171
Agreed. If there's one thing I've learned from this illness it's that things can always get worse. Sometimes horribly, unimaginably worse.

@Rebecca2z, I'm curious, as part of your illness before RTX, did you struggle with allergies or hypersensitivities to foods, supplements, meds, odours etc.? I ask because many of us here have mast cell activation issues and multiple chemical sensitivity which can make us react to even simple OTC meds so it's hard to imagine ever being able to tolerate RTX or other potential treatments of serious nature.

Agree on all points and questions in this post by @Sidereal and looking forward to @Rebecca2z answers. I can't imagine how those of us with MCAS would tolerate RTX (or even the pre meds and amount of saline) and am fascinated to learn more about this aspect!
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Hi @Sidereal - Most of my allergies are to pain meds like Morphine and those types of drugs. I have struggled with
with interstitial cystitis for years and I think some think of mast cell with that, I myself don't know anything about mast cell.
My whole system seems to be in a massive state of inflammation and when that is addressed I do feel better. Like when I did the RTX I was on massive doses of steroids for 4 weeks and boy did I feel good with those on board. I believe those steroids and benadryl were beneficial in allowing me to tolerate the RTX.

Rituxan is or can be hard on anyone, it is used for some pretty sick people ( thinking of RA & Lymphoma) People who get this are not well so with the proper team in place it can be done .....IMHO
 

Gingergrrl

Senior Member
Messages
16,171
@Rebecca2z I may have already asked you this several months back but forgot the answer! Do you know how much saline is given with each infusion and also what dose of Benadryl?
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Hi @Sallyagerharris, Get some coffee it's a long one !

First I want to thank you for your kind wishes ! I am happy you are feeling a little more level for now and I understand the anxiety and worry about feeling worse.
This is such an awful way to live. Having our power and health taken from us is just infuriating and the struggle to make the medical community understand is just more salt in the wound.

I had to learn a lot of 'tricks' to get me through life for the last 30 years. I was bedridden for almost 10 years when I was first hit with CSF . I kind of leveled out too and could go to work, life was still hard, lots of fatigue and funky brain fog but I could function with some thoughtful planning.

Now jump forward... I went back to being bedridden 5 years ago to now after the RTX being pretty active, I walk in the forest for about 2 miles.
I try to do this everyday. I am very pleased that I can get dressed, put on jewelry, and makeup. Before I was so sick I didn't care how I looked and even if I did I couldn't lift my hairbrush, I could hardly shower.

I know I am feeling better because I was able to muck my closet out ! ....this has always been my marker for how I am doing. lol (Sorry guys, it's the little things like hair , make up and clothes I am enjoying.)

I notice I don't have to prioritize like I did before, I can actually get up and go without 3 days of preparing for that outing. In my book this is huge because I have had that barrier for 30 years.

The brain fog used to be such a problem that it was beyond difficult to even pour a cup of coffee in the morning, putting the cream and sugar in it was hard. The brain fog was so debilitating. I don't miss that at all !!

My fatigue is almost gone, I think actually it is gone, I am 61 years old and I believe this is how a 61 year old feels. Unfortunately I am not going to feel like I did when I got CFS in my 30's. Too bad I lost all those years, I think part of me thought when the CFS went away I would feel like I did in my 30's, I thought I might pick up where I left off !
Another big improvement is I don't NAP ANYMORE :woot:

I noticed I am not strong enough to go to 3 stores in the same day and after shopping I am pretty tired, this may or may not improve. But hey at least I am going to the store ! To look at me now you would not know I have anything wrong with me.

I am able to take many calls everyday. Like when I was first hit with CFS I could not talk on the phone and this started up again two years ago, one my voice was so weak and two after one call I was half dead for days. I have never been depressed or on any meds for that so emotionally I feel the same.

I am currently struggling with GI dysmotility, and on a feeding tube using a central line. My autonomic system crashed but even that has improved, I am on less medications now. I was getting IVIG every two weeks NOW I get them every 3 weeks !!!! (insert happy dance)

I think my health issues that began when I was 27 years old has been 1. just bad luck and 2. a perfect storm if you will - Autoimmune diseases run in my family. :(

I am hopeful you can remain at your current level or better yet that you wake up one morning and feel normal.
I am here and happy to share my journey........... Wishing you much better health !
Big Hugs,
Rebecca
 
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Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl Hi, nice hear from you !

If I recall it was a teeny tiny bag and I believe it was used more for priming and flushing the line. You don't want one drop of the RTX wasted !

Nice to hear from you, too! So it sounds like it was a tiny amount of saline and not a whole liter bag? Was the Ritux itself a full liter bag (or more?) and how fast do they infuse it? Also curious if you know how much Benadryl they used? No worries whatsoever if you do not remember.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
@Gingergrrl I have the print out the hospital gave me, the last info I had and wrote on here a few months ago was from my nurse, I believe this is more exact.
I noticed on the page it says that the 3rd dose of RTX was 562.5 mg, not much different from the other treatments of 560 mg, just wanted to be accurate.
Ok here is some info you :

Benadryl 25 mg over 16 min

Rituxan 560 mg over 5 hours ( I think in the past I thought the dose was 580 mg, but I have the print out from the hospital, what I had for info before
was from what the nurse wrote down)

Acetaminophen 2 tablets ( of 325 mg)

Sol-u-medrol IV 125mg ( first RTX I had a reaction and was given more of this)

Dexamethasone IV 20 mg

No saline is listed on the info sheet, As I mentioned in a previous post -I believe because it was used only for priming and flushing the line.

My weight at the time I started RTX was 47kg (104 lb) Height 5' 6 1/2"


Actually my immune doctor at Stanford said I didn't need to have all the steroids, but my local doctor felt I should and since he was signing his name to this it was done.
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
I had emailed Dr. Kaufmann sometime ago about Rituxan treatment at OMI and he recently responded with an "yes".
He asked for medical records etc.. However, if I look at the Norway data, it appears that for older people with moderate-severe condition, there is high likelihood of relapse after 12 months. Therefore, at age 62, I am having second thoughts if it is cost effective and /or worth it. Any suggestions from anyone ? thanks.
 

Gingergrrl

Senior Member
Messages
16,171
@Rebecca2z Thank you so much for posting all of that detailed info and I really appreciate it. I know someone else asked this question and you did not know the answer but does anyone know how these doses compare to Fluge & Mella's or OMI's? TIA for any info.
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
You're welcome @Gingergrrl !

Hi @ghosalb, I wish I could answer that question but I can't, maybe others know. I am currently 61 years old and had my treatments of RTX in Feb & March of this year, I was 60 years old at that time. My doctor at Stanford is expecting me to have a maintenance treatment around Dec. But it will depend on my blood work/B cells.

I hope the benefits I am having continue to work well into my 70's ( or longer ;) but I am not sure if this info is known. I am not looking forward and I am not looking back. I am living in the moment - which is easier said, I work on this message to myself daily !

Hopefully with more research we will have these types of answers.
( I will for sure be posting about my condition every couple of months )

Wishing you wellness !
Rebecca
 
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nandixon

Senior Member
Messages
1,092
@Rebecca2z Thank you so much for posting all of that detailed info and I really appreciate it. I know someone else asked this question and you did not know the answer but does anyone know how these doses compare to Fluge & Mella's or OMI's? TIA for any info.
I think the main difference, with respect to the rituximab, is that for the loading doses Rebecca was given 375mg/m2 once a week for 4 weeks, versus the Norwegians giving 500mg/m2 (max. 1000mg) twice two weeks apart. (In other words, 4 x 375 for Rebecca and 2 x 500 in Norway.)

Also see this post:
http://forums.phoenixrising.me/index.php?threads/rituxan-has-helped-me.37541/#post-596888
 
Messages
15,786
Nice to hear from you, too! So it sounds like it was a tiny amount of saline and not a whole liter bag?
This is done with IV antibiotics as well. A very small bag is often used to fill the line before starting the antibiotics running down the line, then used to push the last of the IV antibiotics out of the line and into the body when the bag is empty.

When nurses were doing it for me, they wouldn't even use the entire bag of saline - just enough to fill or flush the line. But when I was shutting down and disconnecting everything myself once they taught me how to do it, I let the entire saline bag run so that I'd have a bit of extra fluids.

I think the saline was 250mL.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@Rebecca2z - so happy to hear how much better you are feeling. Could you please just remind us of the other serious diagnosis you acquired that you discussed in your original postings - im afraid im not feeling well enough to trawl back to find it. I only mention this because I am concerned that PWME, who don't have your other health problems may not respond in the same way to Ritux and may think they will by reading your posts.

Thanks
Justy
 

Rebecca2z

Paradise, Ca
Messages
248
Location
Paradise Ca
Hi @justy, Glad you brought this up as it is important to know the differences, My CFS is not my only dx. ( Well it was until 5 years ago)

I was dx with CFS in 1980 ( doctors at UCLA called it Epstein Barr Virus)

In 2000 I was dx with 2 genetic diseases, and a couple of other immune problems 1. APECED (autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy) 2. Ehlers Danlos 3. Discoid Lupus 4. Autoimmune dysmotility of the GI with autonomic failure.
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
Rebecca2z
Should I assume that there are now two locations/doctors (OMI/Dr. Kaufmann and Stanford/your doctor) in California for Rituxan treatment ? If so, is it ok for you to share your doctor's name and will he be willing to treat additional CFS patients ? Also, you mentioned before that you received RTX from Genentech at a discount. I was wondering what was your total cost so far (if it is ok for you to share) ? As you are probably aware, few more would like to use this treatment if it was more affordable. Since you are having such good results, it will be really helpful if you could please explain how you convinced your doctor, appeal to Genentech, what other costs etc. ? If I calculate cost at OMI from comments in other threads on this site, it is like 30K for rituxan, another 10k for other tests and 10-30k for travel and/or staying in California for 12 months (total 50-70K dollars). Is your cost comparable ? Thanks in advance.
Really appreciate that you are willing to donate some of your time to answer our questions and share your progress.
 

greeneagledown

Senior Member
Messages
213
it appears that for older people with moderate-severe condition, there is high likelihood of relapse after 12 months. Therefore, at age 62, I am having second thoughts if it is cost effective and /or worth it. Any suggestions from anyone ? thanks.

Can I ask how old you were when your ME/CFS started?

I think you might be right that age matters based on the preliminary data, although we obviously can't draw firm conclusions from that small sample set. But based on that data, I also suspect it's age at the time of onset that matters, not age at the time of treatment. Again, it's impossible to draw conclusions based on a small open-label study, but I'm thinking that if your ME/CFS began before age 35, you might have a much better chance of being a "mega-responder."

I think the explanation for the above is this: It's probably not the case that simply being older makes you less likely to respond to the drug. Rather, it might be the case that people with onset early in their lives tend to have a different subtype of ME/CFS and that subtype might be one for which Rituximab is more likely to lead to remission.

Again, it's so early that all of this is borderline speculation. But the relationship between remission and age of onset in the phase 2 trial is pretty striking.
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
Can I ask how old you were when your ME/CFS started?

I think you might be right that age matters based on the preliminary data, although we obviously can't draw firm conclusions from that small sample set. But based on that data, I also suspect it's age at the time of onset that matters, not age at the time of treatment. Again, it's impossible to draw conclusions based on a small open-label study, but I'm thinking that if your ME/CFS began before age 35, you might have a much better chance of being a "mega-responder."

I think the explanation for the above is this: It's probably not the case that simply being older makes you less likely to respond to the drug. Rather, it might be the case that people with onset early in their lives tend to have a different subtype of ME/CFS and that subtype might be one for which Rituximab is more likely to lead to remission.

Again, it's so early that all of this is borderline speculation. But the relationship between remission and age of onset in the phase 2 trial is pretty striking.

I used to get cold and sore throat very easily starting in teens and then started getting mono in my twenties.....but real CFS symptoms (balance, real fatigue, brain fog etc.) in early thirties. I did not know what it was, so kept working and playing sport....making it worse.....crashed in late 40's...officially dxd at age 53 (2006) by Dr. Enlander....had major relapse in 2010 (in bed fulltime).....little better since 2013 (mostly homebound, can drive upto 10 miles once a week). Since I had recoveries after relapses...I feel I may respond positively to rituxan...but will it last ? By the way.....my mother had CFS symptoms and my elder sister clearly have it now.