Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New drug patent for ME treatment - Trimetazidine, Ranexa and other drugs

Discussion in 'General Treatment' started by redrachel76, Dec 16, 2011.

  1. redrachel76

    redrachel76 Senior Member

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    In the Fall 2011 edition of the National Forum from the NCF there was an article named "Forgotton CFIDS/ME marker Resurfaces Again".
    I couldn't understand much of the article except that it was mostly about Carnitine and complex biology BUT ...

    It reported that some people in group had chatted to some women with ME got breast cancer and had their symptoms resolve when on a drug called ADRIAMYCIN AKA Doxorubicin.

    Could this be a new Rixmatub? Like the scientists in Norway who noticed that some patients with ME were getting better on that Cancer drug.

    As if that wasn't enough, there was also other news that I strangely can't find on the net:

    A patent was issues to "Dr Paul Jenkins" from England for a drug called "TRIMETAZIDINE " aka "Vastarel MR modified release. for use in CFS/ME to reduce mitochondria fatty acid oxidation. Jenkins also mentioned "Ranolazine" aka "Ranexa" as well.
    He used 35mg of oral trimetazine twice a day for relief of symptoms.
    The article then went into long Biology connecting this to Carnitine use and something in the chemistry of cells and mitochondria that I don't understand.

    I once tried carnitine as a supplement and found no help therefore I don't know what to make of this.

    I was wondering what others here think of this.
    From a google search I notice Ranolazine and Vastaral are both drugs used for angina.

    How the hell do we get doctors to conduct a proper trial of these things like they did with Rixamatub?
     
  2. *GG*

    *GG* Senior Member

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    I recently read that one should take Acetyl L-carnitine along with Carnitine.

    GG
     
  3. taniaaust1

    taniaaust1

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    Hi. I was one of the 44 participants in the CFS group in the carnitine/acylcarnitine studies. After the study was published in the journal of Internal medicine they sent us our results (along with the original published article).

    From what I can see it appears to be a very complex area. There is a big list of different L-carnitines and it was only certain ones of these, the CFS group was found to be deficient in compared with the matched age/sex healthy control group.

    Im hoping they will do further studies in this area, one of the two researchers is very young so right at the start of her career, so hopefully she will continue with ME/CFS studies.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is supplementing with carnitine or similar helping cfs/me patients significantly??

    cheers!!!
     
  5. redo

    redo Senior Member

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    In one word, YES. I read the wikipedia entry on this, and it sounds like it could be a wonder drug. It's very effective against hodkins and non hodkins lymphoma (RTX is against non hodkins lymphoma). It is an anthracycline antibiotic, closely related to the natural product daunomycin. When Adriamycin was given together with a monoclonal antibody it was able to eliminate HIV-1 infection in mice.

    So, yes, I think it could be. Can't you take a photo of the artice and upload it? I'd like to see it for myself. Having their symptoms resolve sould amazing.

    It would be interesting to know which dose breast cancer patients normally use. It says here that with high doses there is a 99% or better chance that the patient will not get a serious heart condition called CHF http://lymphoma.about.com/od/livingwithlymphoma/p/cardiotoxicity.htm But with low doses it's different. If it would be a cure, I'd accept a 25% death risk without doubt. Anyways, can you scan or take a picture of the article? It sounds like they are onto something!
     
  6. redrachel76

    redrachel76 Senior Member

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    There was no article or paper about Adriamycin.
    I was just a quick mention that:
    "...While chatting with patients several women alluded to the fact that their CFIDS/ME disease symptoms resolved when on adriamycin also known as doxorubicin, taken for the breast cancer treatment."

    It did not say anything about resolving permanently. It did not say anything about a paper published on adriamycin.

    Most of the article was about complex Biology.
    I can try to scan and download the long NCF article later on tonight.

    Does anyone know how to download to this forum a scanned image from computer files?- do you use the attachment button?

    If it does not succeed perhaps I could send it to an email of someone here.
     
  7. redrachel76

    redrachel76 Senior Member

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    Like I said there was not much about the breast cancer drug. There was a patent issued to "Dr Paul Jenkins" from England for a drug called "TRIMETAZIDINE " aka "Vastarel MR modified release. for use in CFS/ME to reduce mitochondria fatty acid.
    He used 35mg of oral trimetazine twice a day for relief of symptoms.

    A patent is completely different to published research which properly shares the information. I do not know how to search patents online. A google search only comes out with how to give trimetazidine for heart problems.

    Like I said I'll try to scan and download the NCF article tonight.
     
  8. baccarat

    baccarat Senior Member

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    It's highly unlikely that a single drug will do anything for cfs, it's a too complex illness to hope a magic bullet will cure it.

    Regarding carnitine, I tried l-carnitine, acetyl carnitine, carnitine fumarate and all made me worse. When I tried the acetyl one I was unable to sleep for a couple of days. It seemed to work like a very strong stimulant. Last time I experienced such a kick was when I took something to get me going on the bike...
     
  9. redrachel76

    redrachel76 Senior Member

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    I've scanned the document but have just noticed that it says on it "written permission required for reprinting". I don't want to do anything illegal.

    Therefore I suggest that anyone wanting to see it contact the CFIDS foundation at their website at http://www.ncf-net.org/

    Or try to send me a personal message. I assume that me sharing the article on a one to one basis through email is legal and not the same as reprinting on this forum.

    It says the patent for TRIMETAZIDINE in ME is "compounds and methods for pharmaceutical use US patent #20100286073 Inventor: Jenkins P; 11/11/10 "
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    If you PM SnowLeopard, he/she may be able to help you make this available to others legally.

    Sushi
     
  11. voner

    voner Senior Member

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    here is a website where you can read the whole patent:

    http://www.faqs.org/patents/app/20100286073

    to my knowledge -- a patent application is public information -- you can post whatever you want from this patent application.

    from my search, I think this may be the patent author:

    http://www2.le.ac.uk/departments/chemistry/people/academic-staff/dr-paul-r-jenkins

    I love you see somebody check up on my search on the author -- and see if they agree if this is the author....

    ///////////////////////////
     
  12. ukxmrv

    ukxmrv Senior Member

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  13. redo

    redo Senior Member

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    Errhhmm. Unlikely that a single drug "will do anything"... Have you read the (Norwegian ME treatment) news lately? It's not a cure, but it sure does something.
     
  14. gu3vara

    gu3vara Senior Member

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    Sounds promising, almost too good to be true in fact, relatively cheap moreover!
     
  15. redo

    redo Senior Member

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    I dug up some more info. It's not often you hear about symptom resolvement, so although anecdotal I find it very interesting if Adriamycin is able to do it on it's own.

    Mella & Fluge spesifically mentioned Adriamycin (generic name doxorubicin) in their patent:
    "Synergy between RITUXAN and chemotherapies and toxins has also been observed experimentally. In particular, RITUXAN sensitizes drug-resistant human B cell lymphoma cell lines to the cytotoxic effects of doxorubicin"

    Just like adriamycin + a monoclonal antibody was able to eliminate HIV-1 in mice, I think it's likely that a synery could occour between adriamycin + the monoclonal antibody Rituximab against ME. When adriamycin has been said to have such effects on it's own.

    What I think the ME organizations should do, is to make people aware of this, so if someone with ME comes down with breast cancer (as many most certainly will), they know that the drug might fix/allievate the ME symptoms, and thereby report back of it's effects.
     
  16. snowathlete

    snowathlete

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    Not sure i agree with that either. If treated early enough i dont see why a single drug cant be the magic bullet to cure ME for alot of people. It may be more difficult for those who have been ill for longer, because they may have developed other complications, picked up other infections etc.
     
  17. Kati

    Kati Patient in training

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    I am a chemo nurse. I have treated women with breat cancer. Adriamycin is one of the most toxic chemo drug. It makes you lose your hair. All of them including eyebrows. It kills the cells that are rapidly dividing in your body, including cancer cells, blood cells (white and red cells) mucosa cells and hair. It is toxic to the heart and there is a maximum dose you can have in a lifetime. It is also very caustic for the veins, meaning that if it leaks outside of your vein but under the skin, it will kill the tissus around. Nausea and vomitting is very common for quite a few days after the chemo and you alre likely to develop mouth sores. Not for the faint at heart! it certainly not be my first choice.

    What Dr Mella and Fluge said at the Invest in ME conference is they believe that Rituximab causes an "ALT- Control- Delete" ( or reset efferct ) in the body. I am so glad they found it works on our population and I am very keen to be a guinea pig. However I am sure Rituximab is not offering us a cure, but a temporary treatment until science (and governments) figures it out.
     
    taniaaust1 likes this.
  18. redrachel76

    redrachel76 Senior Member

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    I've pmed Snowlepard and I've already shared the article with someone else who sent me a personal message. I'll send it to anyone else who pms me although I don't know if it's come out well enough on my scan.

    Thanks everyone for those facinating links to the trimetazine patent, the case study of that woman that got better etc...and Kati for your info on Adriamycin.

    I think rituximab only helps at giving a holiday from this disease. That's really still super significant.

    I'm really interested in that trimetazine - would love to know if it's effects are more permanent. Like someone here said, all the ME groups need to ask patients if they happen to be on it for another reason to report if their ME symptoms improve.
    I'll try to write to my local group about it when I have the energy.
     
  19. orion

    orion Senior Member

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    There's already been a discussion about Trimetazidine in another thread (link).

    I actually bought some from an online pharmacy earlier in the year but didn't get around to trying it, partly because I was trying other drugs at the time, but mainly because other people's experiences of the drug weren't particularly positive. However, it appears to be fairly safe, and I'm not currently trying anything else, so maybe I'll give it a go.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wonder if it could be a treatment(ritux) combined with an antiviral eg if u have a history of high ebv titres then once u knock out the b-cells then this home for ebv should cause lower viral titre levels?? and maybe antivirals can help reduce or slow down the b-cells from being reinfected with these particular viruses and keep people in remission longer. Just a thought??

    cheers!!!
     

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