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Throwin up White Flag on Rituxan Also! :(

Discussion in 'Rituximab: News and Research' started by Jacque, May 25, 2013.

  1. Jacque

    Jacque Senior Member

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    Well..... not theDsdmom is not the only one that has done some heavy duty soul searching and bank account searching and made the decision to throw up the white flag on Rituxan, now that I am due for my 5th infusion. I am about a year into this and the similarities are AMAZING to hers.

    I was desperate as well and took the very scarey decision to have a chemical dripped through my veins on the slim hope that I would be in the responding group.... well NOT!! My main complaint is PAIN... and I will do damn near anything to reduce it....but to my dismay my PAIN has INCREASED and my pain med intake has DOUBLED since starting on the Rituxan.... ;( ;( ;(

    I also had a slight improvement in the OI symptoms and a few days of better energy...but looking back I had those normally.... I also have a bladder that is sooooo inflammed that I now that I have to take the OTC bladder product to keep the pain under control..it keeps me awake at night... So I have literally ADDED a new PAIN... Ohhhhhh yipppppeeee...

    And the real insult to injury??? About $7,000 k from infusion fees, bloodwork, travel and hotel - POOF GONE!!!! Just POOF!!! I have had a lot of FRIKKIN POOFS!!!!!

    So,,,,then I decided to try Valcyte and that was like eating RAT POISION... Spent almost 3 weeks on the couch in a semi catatonic state.... SCREW THAT... I am DONE DONE stick a fork in me DONE....

    NO MORE DRUGS for now...and I too am now going to focus on rebuilding what I have destroyed with the chemo and clean OUT... and try to settle in and try to enjoy a little of the life I have left.

    I bought a new rebounder which does not have metal springs..has bungee cords which is much easier on the spine and knees.. Google THE MANY BENEFITS OF REBOUNDING...and you will see how powerful it is for building the immune system and cleaning out the lymphatic system. www.jumpsport.com And it is an exercise that us sickos can DO!!! Even if you just do the health bounce where your feet don't leave the mat.

    I also tried a new product called Immunocal and it made me feel about the same as the Valcyte, and it is natural and not all of the scarey side effects or risks. I read an article by Cheney from a few years back where he states that Immunocal can kill the viruses inside the cell. So what hey...it is natural and gonna do about the same thing from what I can see...but what the hell do I know? Immunocal increases Glutithione levels which we all know is a good thing.

    Also as a side note... I took the Rituxan because the theory is that the B Cells are infected and by wiping them out over and over the immune system may reboot!!! Sooo I have wiped my B cells out now 4 times they don't even register... Then I go on Valcyte and get deathly sick on ONE stinkin pill a day!!! Now.....I ain't no scientist but if the infection is in the B Cells and those are gone...then why the heck did the Valcyte make me so sick? Just a thought to ponder...

    Sometimes I feel like we are playing that game where you take a mallet and wack the head that pops up...then a new one pops up... These viruses, bacteria, fungus all trive together and work together...and we go after one of them and the others surface.... After 40 years of this Fn insanity I am feeling pretty defeated....

    Another plan is I am going to Interview Dr. Madill in Sebastabol California. He is VERY up on the BRAIN and its involvement in this illness as written about in Dr. Goldsteins book BETRAYAL of the BRAIN... His theory is that the infections have damaged the Limbic system of the brain....causing it to misfire and send out inaccurate signals in regard to pain, autonomic dysfunction, etc etc... The idea will NOT go away and Dr. Madill is the only doc who I have found that is up on Goldsteins work. If you know anyone else let me know of if you have any info on Madill let me know... I will post here after my appt which I will make in the next month and let u know his thoughts!! I often wonder why all of us have symptoms all over the map....??? could it be because different areas of the brain have been hit, damaged, and disregulated??? Pfffft like I said, what do I know?

    I am also working on Methylation with the supplements.

    Sooooo REBOUNDING, Immunocal, Methylation, Detoxing, and possible brain tuning are my focus until I hear of something that makes SENSE...

    I am with you Dsdmom.... I am OVER bein a guinnea pig!!!! For 6 mo anyway.... lol

    Thank you for posting... makes me feel like I am not such a "quitter"! I gave it damn near a year and my inner voice said STOP... oh and btw so did my boyfriend!!! He is gettin pretty much OVER this crap too!!

    What are you doing for your bladder pain...??

    Hugs to all.....

    * Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are experiencing this".... Wish I would have known that before throwing 7K out the window! Guess I get to be rich in my next life.... ;(
    Jacque, A moment agoEditDeleteReport
     
    Wayne, snowathlete, maryb and 6 others like this.
  2. Gypsy

    Gypsy Senior Member

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    Hi Jacque!
    I don't have much to say, except I'm so sorry the rituxan did not help!! I just want to give you a hug! Damn it sucks putting so much time and effort and not to mention physical suffering into enduring a treatment that ends up not helping at all!

    I really hope your appointment with Dr. Madill leads to some treatment that will ease your suffering AND improve your health/life! I find Dr Goldsteins theory on the brain connection fascinating and wish there were Drs who he trained to carry on his work.

    Best of luck Jacque....You were and are very brave to even try this treatment!
     
    beaker and heapsreal like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its shows how complicated this disease is:confused: . Some with just ebv can be sorted with 6 months of valtrex others it gets more complicated. I think it also shows how important it is to treat this illness as early as possible as the longer one has cfs/me the more hpa axis dysfunction, more infections etc are going on.

    Hey chick, i hope your pain settles soon and that u can improve your quality of life.;)

    Dr mariano's site, not as active as it once was but good to search through the old posts http://www.definitivemind.com/forums/index.php
     
    August59, Valentijn and Jacque like this.
  4. Jacque

    Jacque Senior Member

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    PS...does anyone know what happened to Katy??? She took down her blog and I wonder how she is doing? Just wondering...
     
    beaker likes this.
  5. lnester7

    lnester7 Seven

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    Jacque I am sorry it didn't work out. Best of lucks, hugs and best of wishes.
     
  6. Misfit Toy

    Misfit Toy Senior Member

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    So sorry, Jacque. That kind of money is so hard to lose. I see people on here doing Valcyte and I think it's interesting. My doc said it is AWFUL on the liver. My liver isn't working to well and I bet yours isn't either. I would give yourself a break and let things calm down. I have IC a bladder condition. It gets better by stopping a shit ton of treatments. Get the inflammation down. The meth protocol may be the ticket for that.
     
  7. sianrecovery

    sianrecovery Senior Member

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    At least you tried - you would never have known without trying. And at least you know when to stop. Both of those things are tributes to your intelligence and courage. Good luck with the next bit.
     
    maryb, Jacque, SOC and 3 others like this.
  8. IreneF

    IreneF Senior Member

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    Kati's around. She posts here occasionally.
     
    ukxmrv likes this.
  9. rebar

    rebar

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    I'm sorry it's been so difficult and didn't work, I think you are wise to discontinue, you gave it a fair shot.
    I would try it if given the chance.
     
  10. JAH

    JAH Senior Member

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    I'm so sorry you had this experience. I faced the exact same thing with ampligen- watching thousands of dollars go down the drain, while being made worse.

    I wish you all the best in whatever you decide to try next. It's hard to find the strength to try yet another thing...so give yourself plenty of time.

    JAH
     
    redrachel76 and Jacque like this.
  11. SOC

    SOC Senior Member

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    It's these kinds of stories -- "I dumped xxxx thousand dollars on yyyy treatment and it only made me worse" -- that are causing doctors and regulators to refuse access to those treatments for all patients. We desperately need better research to help us figure out which therapies are most likely to work for any given patient. At the moment the only way we have of knowing is to try it on lots of patients and work out who it worked for, and perhaps why, after the fact. It would be more tolerable if the treatments were paid for by research funds, not the patients.

    Sorry for you guys who have been made worse by expensive treatments. That seriously stinks. Insult to injury and all that.

    I guess the important thing is to go into these treatments understanding that there is a risk you will not get better, or even get worse. Not everyone is willing to take that gamble.

    This disease seriously sucks, doesn't it?
     
  12. Jacque

    Jacque Senior Member

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    SUCKS beyond words!!!!!!!! SOC!! And yes I agree the patient should have expense when offering up our flesh and immune systems to be experimented on.... You want to know the REALLY disgusting thing????? All of that $$ I coughed up was NOT for the TREATMENT!! It was for the infusion fees, travel, and blood work. The damn Rituxan was covered!! It is PURE insanity...............................................
     
  13. Jacque

    Jacque Senior Member

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    I think I have IC now....and yes prob from a shit ton of treatments!!! Thanks for the smile!!!
     
    The Spitfire likes this.
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I would expect that infusion fees, blood work, and the like would be covered for experimental treatment. In sanity indeed!
     
  15. SOC

    SOC Senior Member

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    If the Rituxan is paid for, wouldn't insurance cover things like infusion costs and lab tests?

    Many of us are just stuck with travel costs because there are no specialists anywhere near us. Medical insurance doesn't consider that (sometimes substantial) cost.

    I spent my money on Valcyte for two of us. It was definitely worth it -- remission for daughter and big improvement for me. If I had the money and the access (no one anywhere near me prescribing it), I think I'd try Rituxan, even knowing it might not work.
     
  16. Kati

    Kati Patient in training

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    One thing people needs to know is that the patients who are trying these treatments are doing so voluntarily, knowing the physical, emotional and monetary costs, and risks to said treatments.

    I am very, very thankful to have had a go and I am also VERY thankful for the foundation who has granted me that chance to get treatments. These treatments are not accepted by FDA. Those who accept these treatment sign consent- and we all know there is a chance that the treatment will not work for us, and that adverse effects happens. We are even quoted a chance of death.

    What is the acceptable risk for you? What are you willing to pay for a chance at getting better?
    These are questions that you asked yourself before entering treatments. I would suggest that there are no one to blame into not responding to treatments. No one was forced into taking said treatments.

    We all know there are no quick fixes with this disease, and there are patients willing to take a chance at serious treatments for a serious disease. Results will vary. No promises were made.
     
    IreneF, maryb, beaker and 2 others like this.
  17. IreneF

    IreneF Senior Member

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    I second Kati. I just had my final Rituxan infusion. Even if won't help me in the long run, I hope my experience can help someone else. That was one of the reasons I decided to go this route. I don't regret a thing.
     
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  18. SOC

    SOC Senior Member

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    Thank you, Kati and IreneF. Your experience is invaluable to the rest of the patient community.

    As the parent of a child with ME/CFS, I understand how critical it is to those coming behind us that some of us undertake experimental treatments that may not help us but will add to the knowledge base.
     
    beaker and Valentijn like this.
  19. Kati

    Kati Patient in training

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    The understanding of ME depends on patients participation to controled and non-controled trials of drugs. i know that for myself, I made the right decision regrdless of personal outcome.

    This makes me wonder whether the illness is ready for clinical trials, since there seem to be different subsets in our disease. The last thing we need for our clinical trials is a heterogenous population. Of course, I am a patient and not a scientist.

    What I know is i chose the right physician for my needs.
     
    SOC and Blue like this.
  20. IreneF

    IreneF Senior Member

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    ("Reply" isn't working for me right now.)

    What Kati said about a heterogenous population is true. There is no way of telling whether Patient A has the same condition as Patient B when the diagnostic criteria are "four from column X, three from column Y". But we still need clinical trials!
     
    Little Bluestem, Blue and Kati like this.

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