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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Rituximab Discussion

Discussion in 'Rituximab: News and Research' started by Bob, Jun 17, 2012.

  1. jimells

    jimells Senior Member

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    Hi Kati, I miss my little Sammi bird. They so smart, and sassy! I have to say, I like parrots much better than most people.

    Yes, *everything* has to be approved by some bean-counting gatekeeper - it must be some Law of Nature, right? So the question is, why are none of these drugs approved for us? It's not like we have some rare, orphan illness wth only a few hundred patients. Seems like a few million potential customers for these drugs should stimulate somebody's greed gland. Or are the drug companies only interested when they can sell hundreds of millions of doses?

    Meanwhile there are boatloads of drugs prescribed off-label, marketed off-label, sometimes with fatal results, *somebody* pays for those drugs, and the fines for illegal marketing are just another cost of doing business.

    Once again, what is different about this illness that we are considered trash to be thrown away, while other diseases are 'in'?
  2. Kati

    Kati Patient in training

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    Jimells, I will give you my explanation as of why none of these drugs are approved for us. the answer reside in the history of this illness.

    The historical moment was when Peterson and Cheney alerted the CDC that they had a epidemics,the CDC came and investigated, and deemed both patients and psysicians hysterical. Osler's Web by Hillary Johnson got that history covered in fine details.

    From there, our disease has been discounted by most. "If the CDC says it is what it is, it must be true. " Stephen Straus has been a major player in that story, and not in a good way.

    Me/CFS does not belong to any medical speciality (orphan disease) making it even harder to get competent care. Moreover, the physicians who care for us are not well respected by their peers in conventional speciality.

    And then came in Simon Wessely, the prominent psychiatrist who has been saying for decades nowtht we patients with ME/CFS have false illness beliefs, have been abused as children and need CBT to cure us. This communist empire is sadly very strong, and the effect of theirpublication always reach a world audience, just like propaganda.

    This has prevented most physicians to care for us, to accept this disease as serious and severe and the name is certainly ot helping our case. Scientists have been told it would be a career suicide to research ME/CFS and in fact at least one scientist is a victim of that in the name of Jonathan Kerr. Governments are not in any hurry to bail us out, in fact they are too busy finding a cure for cancer and HIV/AIDS. Which makes them earn votes each and every time they give money for these causes. Ultra conservative med schools are not teaching the disease, or perhaps the wrong things.

    As you know patients with ME are very much subdued and cannot act up the same way the HIV patients walked out and blocked off the Golden Gate Bridge. We have not been heard for all these years! It's like the perfect storm.

    Fortunately there are some very good doctors helping us at the moment, and a very generous donor to fund real research. Help is coming.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I heard on the radio today that the US has spent several Billion dollars on AIDS in South Africa, yet they can't even pretend to do anything for people in this country with ME/CFS.
  4. Jacque

    Jacque Senior Member

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    Hi Again,
    Got through my 2nd Rituxan infusion with no problems at all. And this one only took 5 hours.
    After my 1st infusion the symptoms came on that day. Just an increase in all of my symptoms and skin pain. This time I kicked in the next day.
    Now, what I find interesting is that I drove myself there (4 hours) and drove myself home the next day after the infusion. It wasn't recommended but I didn't feel any worse than usual. Slept 12 hours and then symptoms really ramped up today. Which I am happy about...cuz we have obviously pissed of something!
    I have had a definate "shift" since my first infusion. Feeling more optomistic and staying vertical more of the time. Will keep you all posted on what happens now. Is it the Rituxan or an upswing? Dunno...
    Dr. K and his crew are AMAZING... I have never been treated so well in 35 years of seeing doctors... Feels SO good to have my DR SHOPPING days OVER!!
    Next infusion in October.
    In regard to the cost of the drug... I am equally as confused and frustrated as we are the sickest bunch of peeps on the planet. I am not having to pay for the drug bc I qualified for the patient assistance program, but the next 15 mo of Rituxan therapy will be another $6,500out of pocket for me, not including travel and lodging. They did tell me my insurance should reimburse me for the infusions. I will keep you posted on that...
    I just feel happy to be moving forward and proactive. Been feeling so hopeless lately.
    Take care all of you!!!
    currer and Xandoff like this.
  5. Jacque

    Jacque Senior Member

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    Well Oddly Alex I have no stomach issues...just always constipated from pain meds. After infusion my lymphnodes did not hurt either??? Just an increase in BURNING muscles, bones, joints and more neck/pain and pressure with light headedness... Honestly I am not sure how this whole B cell thing works...its all so complicated - esp when your brain is MUSH...
  6. alex3619

    alex3619 Senior Member

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    I am just glad that things seem to be working out Jacque. You are one of those pioneering the way in which we all may follow. Take care, Alex

    PS I wonder if the pattern and distribution of symptoms might help us understand the disease better?
  7. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I became rather well acquainted a few years ago with rituximab when I had a relative with lymphoma. There are two OTC adjuncts which were thought to maybe possibly increase the killing power:

    1) beta glucans, which might rev up the immune system, since immune cells and fungus are like lions and hyenas. That might result in greater killing via ADCC (antibody dependent cellular cytotoxicity). Maybe killing via CDC (complement dependent cytotoxicity) also.

    2) fish oil, which might act on gated calcium channels and enhance apoptotic cell death - though I don't know if that would apply outside of cancer treatment or not. Rituximab binds to CD20 which is said to be the ligand for gated Ca++ channels.

    Personally, I'd wonder if those two things did actually help much. But they might and they are relatively cheap and probably wouldn't hurt.
  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, Jacque. The time for infusion can really be extended when they have to periodically slow the drip, whenever your blood pressure gets too low. So once upon a time, I had the following idea: whenever the nurse takes BP, ask what the numbers are. If you see them getting low, ask for coffee or anything with caffeine right away. That should keep BP from getting too low and so they don't have to slow the drip. In practice, that did work out very well.

    As you know, the first infusion typically takes the longest. Yet you never know when a subsequent infusion might take longer than expected.

    Btw, BP goes low because the B-cells are being ripped open (lysed), and so their contents get spilled into the bloodstream. That results in a cascade of signalling molecules, one of which is histamine which dilates arteries and lowers BP.

    Good luck with your future trips.
    alex3619 likes this.
  9. jimells

    jimells Senior Member

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    Kati, thankyou for the explanation. I can certainly identify with the 'orphan disease' idea. I have been to more doctors than I can shake a stick at. I get two kinds of 'treatment':

    1. "You're not sick"
    2. "We can't help you, we don't know who can, and we don't know anybody anywhere who treats ME/CFS"

    Recently I asked the neuro about testing NK cells, etc. Of course he said to talk to rheumatology about that.

    Earlier this week I saw the rheumatologist. They absolutely refused to test for NK cells. They said their initial testing did not point in that direction, or something like that. But the chest Xray supposedly shows I have COPD, so that's what might be causing my illness. And with that they hussled me out of the office, and refused to give me a copy of the lab tests (which of course I have a legal right to have). I was so exhausted from trying to get something useful out of the rhuemy I didn't even have the strength to pitch a fit about getting my records.

    BTW, the COPD stuff is nonsense, regardless of what is on the Xray. I played saxophone for the past 15 years, including baritone, until last winter it was just too exhausting. But I never had a problem getting enough air. And it takes a lot of air to run a bari.
    justy likes this.
  10. Kati

    Kati Patient in training

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    Yeah Jimells that kind of treatment is familiar to me in Canada. That is why I have started the petition (seen on each one of my post and irritate the government through Twitter asking them to explain why zero funding for 411 000 of us, but hundreds of millions for 70 000 patients with HIV.

    I think that this BS treatment will shift soon with all the good research happening now in many places with many different teams. Looking forward to the papers. And you can be sure I will send each one of them to my GP and government entities.
  11. alex3619

    alex3619 Senior Member

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    On issues of non-approval of drugs, psychobabble etc., I posted a new blog: Here we go round the Merry-go-round. This is about the Helicobacter pylori story and how history is repeating itself, repeating itself, repeating ...
  12. Jacque

    Jacque Senior Member

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    Thank you for that explanation... Now I know why they are always in there taking my BP... But mine is soooo low anyhow... It was 75/60 last visit and they were wondering why it was so low... I said it is alwayslike that... The walking DEAD... No real changes... just more of the SOS!! SEVERE burning in neck/spine - nerves everywhere. Is it the Rituxan or just flare up? Am needing to take Norco a lot more during day it seems... Soooo I guess time will tell.. Just read about the Mast Cell theory? My head is spinning... I really don't want to know about all of this complex immune crazzzziness... I just want to find a way to get this fire out in my body... What are you doing for treatment? Are you doing Rituxan as well?
  13. Jacque

    Jacque Senior Member

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    Sherlock...are you like a doctor or what??? lol Sheeeesh very scientific stuffffff....
  14. Kati

    Kati Patient in training

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    Jacque,
    Am at week 19 post Rituxan, and also experiencing lots of pain from neck to tailbone but I believe it was there before Rituximab too.
    I am not taking any pain killer for that, I don't feel it would help me in any way but that's just me.
  15. Jacque

    Jacque Senior Member

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    Kati...sooo infuriating...and so much wasted wonderful lives. I do know my doc has the ear of the CDC ... I have been filling out all of their questionairres... what ever that means... Will probably take another 10 years to get that done...Disgusted...
  16. Jacque

    Jacque Senior Member

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    Well....that is depressing Kati... as that is one of my biggest complaints!! Doesn't appear that you are a Rituxan responder? did you have the 6 infusions? If I didn't take Norco I would be OUT of HERE... The pain is unbearable...and neck, back or head, to tailbone...glutes...shit the only thing that doesn't hurt when I think about it is my HAIR.... I would NEVER sleep without Norco... I have been dealing with this crrrrap for 35 years and didn't get on pain killers until about 5 yrs ago. Wish I would have sooner so I could have enjoyed my kids more and not missed so much of their lives :(
    Where did you do the Rituxan?
    GcMAF Australia likes this.
  17. Kati

    Kati Patient in training

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    Rituxan is done in Mtn View. I have a blog about my experience if you're interested. www.bikechick06.blogspot.com
    I have had 3 infusions so far, my next month at the end of September. I was told I am not an early responder- however there are still chance for being a late responder! I am sure Andy K has more tricks in his bag. Looking forward to my visit to SFO.
    Hanna likes this.
  18. Jacque

    Jacque Senior Member

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    Oh... that is YOU... Kati... I spent a whole night in your site reading your posts! I also see the wonderful Dr. K... My doc shoppin days are OVER... I honestly feel if he can't help me no one can. Have you discussed taking antivirals in addition to the Rituxan. I asked him and he was open to it. I just want my new B cells to stay healthy... I am two weeks post my 2nd infusion... so right behind ya girl. I go in the beginning of Oct... Too bad we can't get out treatments together... It would be fun to get to know you.
  19. Kati

    Kati Patient in training

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    I have asked him couple weeks ago in a moment of despair. He said I was still early in the f
    Game, must wait. So I do just that. I very much trust his judgement. IF you haven't done so, buy the DVD set of Invest in ME and watch his talk. Very uplifting and worth it.
  20. IreneF

    IreneF Senior Member

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    I had my fourth infusion yesterday. Dr. K. doesn't want to start antivirals. He gave a couple of reasons,but it could be that he thinks I may respond w/ out additional drugs, or because he thinks it's riskier. I had about 3 weeks in July of feeling much better, plus improvement in the bloodwork I had done at Stanford. Then back to the usual crappiness.

    They also gave me a bunch of meds to take at home--phenergan, tylenol, zofran, benadryl. Seems like they are being extra-cautious. I am not having any after-effects, tho, I just feel my usual icky self.

    The office has lost that we-just-moved-in look, and there are new people. I was hooked up to an actual infusion pump instead of just a drip, and things went a little faster. They also gave me zyrtec instead of benadryl, so I was more conscious.

    Now back to waiting.

    Irene
    merylg likes this.

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