Rituximab Discussion

[Jacque]

[Well....That is pretty depressing.... to say the least.... this waiting stuff sucks... I ain't gettin any younger... lol I had a pretty amazzzzing day today.. Took the usual one hour to wake up after getting up at 11 but I have been vertical and "going" for the last 10 hours???? WTH???? Did the planets line up or what???? Still hurting like a bi*&%...but am up and productive ... today anyhow. Yah they sent me home with all the zyrtec etc also... I think I had the infusion machine too... I noticed a lot of new faces too... They are all pretty nice!!! Irene I am soooo sorry you got a taste of feeling half way decent but now back to same ol CRAP... But you did have some improvement and in the long run it is us guinnea pigs that are gonna help conquer this nasty beast.... I feel like I am offering up my body do you? Geez it is the least I can do for future generations. Hang in there...
Hey have you noticed increased sugar and carb cravings since you went on the Rituxan? I am having BAD sugar cravings...like get in between me and my peanut MnMs ...and I will kill you cravings...I have gained 4 lbs due to sugar cravings out of control... weird???

 

[Jacque]

HI Kati...are you online... ? I just spent more time in your blog... Girl you can write... you brain must be working to be able to write like that... and it also seems very cathartic for you... I am wondering if I should do the same...? The more web presence ... and stirrin the shit the better? Have you noticed a dramatic increase in Sugar and Carb cravings since starting R? I have gained 4 lbs and can't stay away from Choc MnMs and Starburst... Keep in mind I am one that views sugar as poision!! I stay away from it!! But lately I don't care it is like crack or something.. I gotta have it... Just wondering if you have noticed that!!! Also... in regard to your toe ... Melaleuca Oil would be a miracle for it!!! It you give me your address I will send you a bottle..no charge.. It will HELP!!! XO

 

[Kati]

Hi Jacque, well craving sugar I don't see it as poison nor do I restrict it for me. We all need sugar. That's what I think.
Thanks for whatever oil you are suggesting me- the toe is doing just fine now- and I view natural medicine as poison... LOL. Don't get me going on that, and no need to say more (please) as I am not interested.

I am after medical treatment and that explain my choice for Rituxan.

Thanks for good comments about my blog. I have been writing since I was a little girl. Cathartic, absolutely.

 

[Jacque]

Wow...... ok.

 

[Snow Leopard]

To all of those recieving the treatment, I wish you luck. To me hearing about improvement from real patients is more meaningful than just studies that apparently found a statistical difference in questionnaire answers.
I won't really be 'convinced' of the efficacy of the drug until I hear that patients like you have improved.

 

[Jacque]

Yes...and the key will be how "long" we maintain our improvement. That is what Dr Kogelnick is very concerned about as well... But we are all like the Canary in the coal mine at the present moment... Tweet tweet

 

[IreneF]

The worse I feel, the more I crave comfort foods and junk food in general. I don't think it has anything to do with the Rituxan.

It really sucked to start feeling better and then go back to bed for three weeks, going on four now. I did manage to brush and floss last night! I think I'm going to hang with the cats today and indulge in gardening fantasies.

 

[Jacque]

I did read online that Rituxan can mess with glucose somewhat...but Dr. K doesn't think it is connected either... Just so unusual for me to eat sugar... knowing it FEEDS everything bad... I usually just resist but lately dang, I can't... Hey did you see Rianna's art work of the Terrible B Cells and the new healthy B cells? We had fun doing that... Oh no an only brush and floss day after good weeks...that SUCKS... But you got a "taste" of what somewhat normal feels like..and now we are the guinnea pigs that are gonna help Dr. K figure out how to KEEP us there... And even harder I am sure is to explain it to others... Like WHY AREN'T YOU BETTER? They just don't understand how damn complex this is...and if you are like me it has made me somewhat of a recluse... it is just easier that way... You have your cats and I have my Shihtzus.. Thank God... they SAVE me sometimes!!!

 

[IreneF]

Yes! We were admiring Rianna's artwork.

I didn't really expect to feel any better until October at the earliest. But waiting is hard.

 

[Jacque]

She is such a cutie... I am gonna miss seein her in Oct...cuz school will be back in session. I didn't expect to be better till Oct either... but I am definately better... in the regard that I am vertical most of the time now instead of completely layed out.. I have read a lot of your posts...and I think geeeze did I write that? We sound identical in the way you describe things. Do you have severe neck burning and burning of entire spine down to tailbone also? My pain level has not decreased any but my fatigue, weakness, light headedness definately has...and I am gaining my wt all back...dang it I liked bein skinny! I guess the thing I am more confused about than anything is how we get the new B cells to stay "un" infected........??:thumbdown: Hope you had a decent weekend...

 

[currer]

Thanks everybody for reporting your rituximab trial reactions.
keep going!

 

[Sherlock]

and I am gaining my wt all back...dang it I liked bein skinny!

Offhand, I'd interpret that as the return of a healthy appetite, being a good sign. Are you eating more?

Also, the reduction of light headedness might mean that you have some water weight gain, which is correcting the problems from previously being effectively dehydrated (low circulatory volume).

I'm going to study all your posts, since you are a pioneer and all The order of symptoms disappearing is interesting. They don't publish that info in the studies.

 

[dsdmom]

Irene, you said you just had your 4th infusion. So how many weeks/months out are you? And how many weeks out were you when you had your very good few weeks? Could you elaborate on what that really means and also what types of side effects, if any, that you have had? Thanks in advance!

 

[IreneF]

I had my first infusion at the end of March, so I'm using April 1 as my start date for convenience. Six months out would be October, which is when I was hoping to see improvement. I started noticing a distinct improvement on July 5, and it lasted off and on--mostly on--for about two or three weeks, but it was followed by three weeks of worse than normal. Many days of staying in bed with my iPad.

By improvement I mean more energy, more focus, and the ability to rest and recover. My POTS symptoms did not improve. I took a couple of baths and learned that the hard way, so I'm back to sponge baths and washing my hair leaning over the edge of the bathtub.

I had a mild reaction after the first infusion. Other than that no problems. Most of the time I'm not exposed to anyone other than my immediate family, so I'm not too concerned about picking up infections.

I don't know what it means. I hope it means that I will respond for longer and longer periods.

Irene

 

[Jacque]

Sherlock.... now that I know you are studying my posts I will try to be more detailed...and I LOVE it! Today I am 2 weeks post 2nd infusion. I was really hoping for my first change to be a reduction of PAIN in my spine from neck to tailbone,muscles, and bones. I am taking 5-6 Norco a day and sometimes takes 2 to get me to settle down, so I can sleep bc of the BURNING in neck/spine.
What I HAVE noticed, after looking at my notes of when I started is actually quite significant! I wrote down how bad I really was so I wouldn't forget, cuz I am one those who just wants to shake things and GET ON with my life as if itnever happened. I am still VERTICAL most of the day... Occasionally I will lay down in the afternoon and watch some TV..but that was ALL I did prior to the beginning of Rituxan. I grocery shopped last week, House is fairly clean and picked up, I cooked 3x last week, appetite HAS returned (with sugar/carb cravings) n have gained 5 lbs,find myself saying YES to doing little things where before Rituxan it was ALWAYS NOOOO!, been taking care of my 2 mo old grandson a LOT, making some plans for the Holidays...WHAT?, more positive and optimistic, feeling somewhat stronger - pulled out my 10lb wt for my arms and dusted it off - WHAT? Did 15 reps on each arm for 3 days now... Before I would look at the weight under my coffee table and just think - uhhhh no way!
So CHANGES ARE HAPPENING... in regard to energy and couch time. Not gettin too excited cuz it is so depressing when you hit rock bottom again... My girlfriends got together on Sat night for wine n snacks. I said YES to going... they were all SHOCKED.... I really enjoyed myself... but of course payed the next day. But I WENT... and that is BIG...
My analytical brain is concerned about this:
I am certain that Lyme is what has caused the ultimate destruction of my immune system. Have never had a definate positive test on it. Igenex said 6 positive bands...but still said negative... But I KNOW I have it cuz anytime I take any bacteria killing substance or Abx. I go into absolute ORBIT... and literally feel catatonic...with pain uncontrollable.
So .... I am killing the hidden viruses in my B Cells and over time that has to make me feel better... BUT.... what about the bacteria that is there that caused the disfunction to begin with..? ? Will I just end up back at square 1 in time because I didn't deal with real culprit??? Like filling a glass back up with water that has hidden cracks, without repairing the invisible cracks?

ANALYZE THAT SHERLOCK!!! And have you ever had accurate Lyme Testing? Honestly I wonder if all of those people who responded in the Norway Rituxan study had UNDIAGNOSED LYME!!!! And maybe it "hides" in the B cells also??? And that is why many relapsed??? I brought up this theory from my analytical brain ... to Dr K and he said it is quite possible.

 

[Daffodil]

isnt the lyme bacteria mainly in the B cells too?

i never heard of rituxan being a cure for CFS..i thought it just allowed temporary relief...?

 

[IreneF]

No one knows if Rituxan is going to be a cure for CFS, but several people in Norway have had long-term remissions. It's been only a couple of years.

 

[Jacque]

I have never heard or read if Lyme hides in the B cells as well??? But I suspect so.. and Irene is correct...it all just in the research phase... New song...always in my head "I live my life like a Canary in a coal mine"... All I know is I respect Dr. K like NO other ... in 35 years of giving ever dime I have to doctors... And he gave me my options and told me that at this place and time Rituxan holds the most "promise"... so at age 51 with a brand new Grandson...I liked the word ... "promise"... and if I just get a few good days or months...it will be better than NONE... until someone comes up with an answer for this. Can you imagine if someday they realize that MS, Lupus, RA, ALS, FM, CFS, ME, ETC... are all REALLY LYME?? Have you all watched the documentary UNDER OUR SKIN? It is on Netflix and available to rent everywhere... I suggest everyone no matter what your diag to watch it... You will see what a HUGE hidden epidemic Lyme is and how it relates to our illness. It is just like ME/CFS... Not properly diagnosed, Ignored by Govts, and a political disease!!! I just can't help but hope all big time Govt officals or family members GET this... As sad as it is it is the ONLY way any of this is gonna get proper attention... Of course I would wish that they wouldnt have to suffer 35 years of torture, humiliation, judgement as I and so many of you have...

 

[Jacque]

Offhand, I'd interpret that as the return of a healthy appetite, being a good sign. Are you eating more?

Also, the reduction of light headedness might mean that you have some water weight gain, which is correcting the problems from previously being effectively dehydrated (low circulatory volume).

I'm going to study all your posts, since you are a pioneer and all The order of symptoms disappearing is interesting. They don't publish that info in the studies.

 

[Jacque]

Well I wish I could figure out how to start a new discussion ... but for some reason I am not making my way around easily on this site.... grrrr..
Question on BONE PAIN and BURNING.... I want to know how many of you have it? I was doing better after the Rituxan as I reported and last night a monster was unleashed in my body... I took 4 vicoden within a period of 5 hours I was just racked in pain ... in my BONES... (like I feel when I kill off Lyme bacteria Herx's) So something is NOT HAPPY! Been horizontal most of the day today and just can't get pain under control. I am just wondering how many of you have bone tenderness, burning, and stabbing pains? Just curious... I think Lyme is what is infecting my bones...but who knows?