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Cyclophosphamide

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Badpack, Oct 22, 2017.

  1. Badpack

    Badpack

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    Hey guys,

    after reading about the good outcomes after Rituximab treatment, i started a Rituximab therapy myself. Sadly it did nothing for me and im now thinking about testing Cyclophosphamide. I saw the CycloME study and that the follow-up period is over.


    "Status, CycloME part A

    The treatment and follow-up phases were completed in August 2017."


    They said they want to publish the result some day in 2018, but honestly, i dont want to wait that long anymore. I wrote Fluge an eMail some time ago, but sadly he didnt respond. Does anyone know anything about the cycloME study ? Do they maybe talk about some of the results like they did last year with Retuximab any time soon ?


    Im asking myself, is there a good indication that Cyclophosphamide can help Rituximab non-responders ? ( They included 40 ppl about 20 of them who didnt benefit from Rituximab )

    Also very interested in any news regarding Filgotinib. Seems very promising for other autoimmune diseases.


    Any help is appreciated :) thanks
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    Anecdotally Fluge / Mella are seeing results from cyclophosphamide in non-responders to rituximab. I believe around half benefited. They have publically said the temporary side effects are worse than cancer patients experience.

    In a talk Fluge gave an example of a cyclophosphamide responder who went from ~200 steps a day to over 10k. That said, if I were personally considering cyclo, I'd wait until the pilot study was published so I could have verifiable data to act on
     
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  3. Badpack

    Badpack

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    Thanks, yeah i saw the video from Fluge talking about what you said. That was the reason for me trying Rituximab. But these informations are nearly 1 year old now. I hope they do the same thing again this year now, talking about new stuff.

    I mean they used "very low" doses. So the side effects should be tolerable. (500mg vs around 3g for chemo where the hearth failure rate begins to rise) Atm im also walking around 300 steps a day in my home. And i was a marathon runner before this...My situation is bad enough for me to try everything that may help.
     
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  4. Hip

    Hip Senior Member

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    May I ask how many rituximab infusions you had, and over what time period? Were you following the Fluge and Mella protocol? It's just that I like to keep track of the rituximab successes and failures on this forum (and so far, this forum's rituximab success rate looks worse than the phase II study by Fluge and Mella).
     
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  5. Badpack

    Badpack

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    Hey, no problem. I followed the Fluge and Mella protocol. But i didnt do the full 15months because i needed to pay for it myself. So i stopped after 9 months. Because looking at the study, its very unlikely to response after 1/2 year.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Badpack I was curious what your main symptoms were and if you tested positive for any auto-antibodies prior to doing Rituximab? Thanks in advance!
     
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  7. Badpack

    Badpack

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    Main symptoms: brain fog, PEM, POTS, a lot of cardiac problems. 90% house bound, 50% bed bound.
    Positive antibodies from celltrend : ß1 - 20 U/ml ; ß2 - 10 U/ml
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for explaining more about your symptoms/autoantibodies and I appreciate it! What type of cardiac problems did you have besides POTS?
     
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  9. Badpack

    Badpack

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    @Gingergrrl

    extrasystoles, angina pectoris, palpitations,presyncopes and so on
     
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  10. Badpack

    Badpack

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    @Gingergrrl

    Dont pay to much attention to those Celltrend antibodies, in the norway study they where irrelevant for the outcome. Also only a 1/3 showed benefits from removing them via immune absorption.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Badpack, in addition to the POTS and symptoms above, I was curious if you ever had shortness of breath and if you had to use a wheelchair b/c of the entire cluster of symptoms? I am trying to find patients who are/were similar in presentation to myself (both re: autoantibodies and symptoms).

    I am so sorry you are dealing with all of that. Does anything help the angina or irregular heartbeats?

    I know this has been an issue for debate in the past on PR, but my understanding of the Norway study is that in the patients who were responders to Rituximab who also had the Cell Trend autoantibodies, that the autoantibodies decreased with treatment. I still can't figure out where I am wrong in this interpretation. (I have no idea re: the statistics re: immuno-adsorption).

    In my case, I also have some other auto-antibodies (besides being positive for 7 of the 9 Cell Trend Abs) including one that attacks the calcium channel, and it is so challenging to figure out what is causing what. So far, I am a responder to Rituximab.
     
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  12. cyclamen

    cyclamen

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    Hi badback - as a doctor, besides having a try on all kinds of treatments, you had probably all kinds of tests. Did nothing show up on the event recorder (heart) or skin biopsies or xxx? Maybe you have one of the structural damages leading to POTS, taking a longer time to heal before you will be able to feel a positive result.
     
    Last edited: Oct 23, 2017
  13. Gingergrrl

    Gingergrrl Senior Member

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    This is a good point and my understanding is that there are many different sub-types of POTS and "Autoimmune POTS" (which my doctor diagnosed me with) is only one type.
     
  14. Badpack

    Badpack

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    Hard to say if you are short of breath if you only can walk for like 10mins max a day. But in rest, no, not really a feeling of short breath. Even when walking a bit uphill i dont have the feeling of short breath. I never used a wheelchair because i dont have the feeling it would benefit my situation in any way. Its not only the walking that breaks me, also a busy surrounding can often be enough to start the brain fog and other symptoms after a while.

    My observation is, what needs the most energy in a human body goes down first for me. Its Brain, Hearth, Muscles.
    It always starts with brain symptoms: brain fog, blurred vision, nausea, tinnitus, sometimes migraine then, if i dont stop going over my small limit. Hearth symptoms: extrasystoles, palpitations. And finally muscles: fasciculation, pain.

    The thing that helps me a bit for the heath problem is Ivabradin / Procoralan. The angina comes and goes just like a lot of symptoms. Sometimes its around 5 times a month other times im free of it for months. I tried Nitro, but the Nitro Headaches were unbearable.

    Rituximab is used to destroy the Cd20 B-cells. So your autoantibodies go down after a while. Thats the hole purpose of using it. (for now, because maybe there is more to it what Rituximab can do) You are exactly right. And in the norway study everyones antibody count went down.

    But! Here comes the big but, if you had the Celltrend antibodies to begin with or not didnt tells anything about a positive outcome on Rituximab or not. There was no scientific significance. People without Celltrend antibodies got better. And people with Celltrend antibodies before Rituximab, and none after therapy, stayed the same. So that tells you that the Celltrend antibodies are irrelevant for now. Still, i think Cfs is an autoimmune disease, but i think especially those celltrend antibodies are not worth anything for now.

    Hope i explained it well enough so that ppl can understand what i mean, with my bad english and heavy brain fog atm haha..

    And im very happy that Rituximab helps you!
     
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  15. Badpack

    Badpack

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    Event recorder showed hearth breaks for 4s to 10s at night. heart echo/MRT showed a normal "healthy" hearth. A hearth biopsy showed random small inflammations and random t-cells without any clue why they are there. Some studies about Cfs and hearth biopsy show a part of them have the exact same showings that i do, but no one knows the reason for now.

    I think it has to do with my cause of Cfs. It started with an old broken lead water pipe and i was showering in sewage. So i got a medium lead poisoning and 2 weeks later i got an cold and legionella p. antibodies were found. ( so in hindsight you could say it was a pontiac fever). So i was breathing in a lot legionella p. during my shower. And maybe some of them reached my hearth and started a small infection. But as i said, i made a PCR and legionella pneumophilia is long gone but still t-cells in my hearth. So my immune system must be the cause of it.

    Skin biopsy showed small fiber neuropathy but its not clear to say why its there. Not sole metabolic nor autoimmune, more like a mixture of both. I know it takes about 1 year to heal when the cause of it is found and treaded but still, Rituximab should at least better the symptoms at rest, even with POTS and damaged small fibers. But it did not do anything good whatsoever. Its now 1 year after i started it.
     
  16. cyclamen

    cyclamen

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  17. Badpack

    Badpack

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    No one offered me Rituximab, i asked and payed for it. These inconclusive hearth results are indeed very concerning and unsatisfying but not that uncommon in CFS i think if everyone would do a biopsy. Also SFN seems not that uncommon in CFS because of the bad blood circulation. No controls yet for SFN. Yes my numbers are very low you are right but still i don't think they matter much looking at the Norway study.
     
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  18. Badpack

    Badpack

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    I can post my lab results in a new thread if you are interested.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @Badpack Thank you for explaining further and our symptoms are definitely different in that I was short of breath within 30 to 60 seconds of standing/walking. I was physically incapable of walking for ten minutes per day for the last 3 yrs until very recently from IVIG & Rituximab. I have not yet attempted to walk on a hill/gradient and have only walked on completely flat surfaces.

    I was just curious b/c the wheelchair was the single biggest help of anything that I tried and made the difference between me being homebound vs. being able to go outside and participate in life. But I do not have brain fog or some of the other classic ME/CFS symptoms. (When I had severe MCAS episodes in 2015, combined with the lack of food at that time, it without question affected me cognitively but that part is now over, hopefully forever).

    If you or anyone know the answer to this, I would love to understand... are "CD20" and "CD19" the exact same thing re: B cells? My blood tests (the lymphocyte subset panel) which measures T cells & B cells, always refers to the B cells as "CD19" but I see it written in other places as "CD20" and I wondered what this means?

    In my own case, I do not feel that the Cell Trend autoantibodies are irrelevant and neither does my doctor (who has no connection to Cell Trend labs). I do not know if I believe that CFS is an autoimmune disease but I believe that my own illness (whatever it will ultimately be called) is an autoimmune disease.

    Thank you so much!

    I don't understand what this means but was hoping you could explain it further. When you say "hearth" do you mean "heart" or is this another term that I don't know? Also what are "breaks for 4s to 10s"?

    Do you mean that you had an actual biopsy of your heart?!!! They do not do this in the US and I had heard that it is really only done in Germany. Sorry if you said this and I missed it but do you live in Germany? In the US if someone is already having heart surgery for another reason they will do a biopsy but otherwise, they really are not done. Did your heart biopsy test for viruses? I think some of the common heart viruses are parvo, coxsackie, and maybe HHV-6 but I am not sure? I am not sure what it means re: the T cells that they found in your heart (and hoping some of the science people can step in)!

    Wow, that is horrible! I am so sorry. Mold played a big role in my case along with other factors.

    My understanding is that Rituximab would only help if the cause is autoantibody mediated and since you had possibly active infections, you might have needed a different treatment?
     
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  20. Badpack

    Badpack

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    Sorry thats probable my bad english haha (dont know why i keep using the word hearth instead of heart), i meant that my heart doesn't beat for about 4s to max 10s when i sleep.

    Here is a picture (in german language, sorry, and yes im from germany :) for you how B-cells are "made" from bone marrow / stem cell to final form. Cells are categorized via cell lineage markers. So CD19 and CD20 are different markers, both from B-cells so its both used to talk about B-cells in the end.

    https://www.deutsche-apotheker-zeit...Ocrelizumab_Pfade_7413569-700x551-660x520.png


    Yes im from germany, yes an actual biopsy from the heart haha. Sounds spooky i know, but isnt that big of a problem. It isnt done in the US because of your nice law system and recourse receivables haha.. test for virus and bacteria done, nothing. Its classified as autoimmune carditis of unknown reason.

    Thats right and wrong. I heard that Rituximab in higher doses does other things to besides destroying B-cells. Also the problems are long living plasma cells which produce antibodies and don't die by Rituximab. (Because no cd20 marker) So you never can really tell if you dont have autoantibodies or they are still produced by long living plasma cells. So if Rituximab doesnt work, you still dont know (without a sufficient blood test like in CFS) if its an autoantibody or not.
     
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