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Why have the MS drugs never been tried in CFS?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by dreampop, Jun 4, 2017.

  1. dreampop

    dreampop Senior Member

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    Given that CFS is seen as a neuro-immune disease, although with some new theories emerging, I was wondering if any doctors or patients have tried the MS drugs: interferons beta-1a and beta-1b, four monoclonal antibodies: natalizumab, alemtuzumab,[7] daclizumab[8] and ocrelizumab,[9] and five immunomodulators: glatiramer acetate, mitoxantrone, fingolimod, teriflunomide,[5][10][11] dimethyl fumarate.[12][13].

    We know there is brain inflammation r.e. the Japanese study, so that seems like another reason to try them. Cort Johnson reported 1 person experienced improvements while on glatiramer acetate.
     
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  2. Alvin2

    Alvin2 If humans were rational...

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    They have probably been tried, though i'm too brain dead to check pubmed (which is not a complete reference but a very good one)
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Very good question, have not seen any studies and have been wondering about this myself
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I believe Dr Chia has as he has prescribed different interferons fir enteroviruses.

    Drugs like ampligen, immunovir and cycloferon are interferon inducers ie they stimulate the body to make more interferon. Interferon itself has antiviral properties but also stimulates nk function.

    I think those interferon drugs used in MS should be able to be prescribed to cfsme patients. Criterias could be low nk function and or high viral titres indicating a possible chronic viral infection.
     
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  5. Cinders66

    Cinders66 Senior Member

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    I'd like to know why this isn't being trialed in ME- anti inflammatories supposedly already in use for arthritis which they are trialing in depression cases thought to be caused by Inflammation?

    Could an overactive immune system cause depression?
    http://www.bbc.co.uk/news/health-39693961

    Why is it seemingly every other major God darn illness is having a good research effort outside our own ?
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Whats the arthritis drug used to treat depression called?? Theres a very strong pain killer thats used in those eith multiple painful injuries, also as a part of an anaesthetic and is a drug used in veterinarian medicine called ketamine.

    Its used in much smaller amounts then commonly used for severe pain thats been trialled as a treatment for depression? I dont think they know the exact mechanisms of how its works. It is an nmda receptor agonist? I think studies were done a few yrs ago now.
     
  7. Basilico

    Basilico Florida

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    The major issue is that there are no good treatments for MS. I have been diagnosed with MS for 7+ years and have done EXTENSIVE research on the medications available to me, as most of my neurologists were very insistent that I be on one of them. I refused to take anything for 7+ years, because once you actually dig into the clinical studies and read of people's experiences on the forums, the drugs are usually worse than worthless. At best, they slightly reduce relapses in less than half the people taking them (not very encouraging) and they have extreme side effects that often necessitate discontinuation. Many must be vigilantly monitored for signs of organ damage so that they can take breaks from the drugs to let their livers heal. Injectables cause necrosis of the flesh, and many end up covered in necrotic flesh. These are only 2 of many problems. It's common to hear that the MS drugs are worse than MS itself.

    I also have an uncle who has had MS for probably 40 years at this point, has tried EVERY drug approved for MS, and was able to get himself enrolled in every available clinical trial for experimental meds. He's spent the last 30 years wheelchair bound, 20 years bed bound. I don't think a single medication he ever tried ever helped him (though to this day he's convinced they did, which is more wishful thinking than fact), and for many years he was only able to continue working because his neurologist was feeding him crazy high amounts of provigil and amphetatmine. This is where western allopathic medicine is with treating MS.

    Recently, I decided to trial Tecfidera, a drug that has been used in the EU for 30 years and was recently approved in the US for MS, since that is the only MS med that seems to be promising, both for MS and CFS as it raises glutathione and suppresses B cells. My experience was a disaster and I had to quit it within 2 months. My experience is detailed here: http://forums.phoenixrising.me/inde...ress-increases-glutathione.19228/#post-848216

    The main difference I see with how doctors treat MS vs. CFS is that with MS, toxic drugs are zealously pushed on vulnerable and desperate patients, while with CFS doctors have little to offer their vulnerable and desperate patients. Unfortunately, the results are the same. I don't have confidence that breakthroughs for CFS will come from MS research.
     
    Last edited: Jun 4, 2017
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  8. geraldt52

    geraldt52 Senior Member

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    Sadly, I think this is one big thing that MS and CFS have in common...
     
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  9. Alvin2

    Alvin2 If humans were rational...

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    I've had doctors trying to do this to me before i was diagnosed with ME, its like they need to feel like they are doing something no matter how much damage is done.
     
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  10. Basilico

    Basilico Florida

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    Yeah, the sad thing is that I think it's possible that had he not pushed himself so hard to be "productive" and instead rested more and used pacing, he might have had less disability in the long run. No way to tell, but relying on drugs to force the body to do what it's not capable of is a recipe for disaster, whether you're sick or healthy.
     
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  11. dreampop

    dreampop Senior Member

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    Thanks for your great response. I knew the MS drugs weren't great for MS, and I guess I was hoping they might be better for CFS. And, yeah, the side effects look insane. It raises some questions, that if Rituximab were found to be modestly beneficial for CFS, would it be a similar situation? I was also thinking about the price, it wouldn't be covered by insurance to try for CFS, so it would be tens of thousands of dollars just to try.

    That being said, I still have morbid curiosity to see how a group of CFS patients vs controls would react to some of these, for examples ones that prevent the movement of immune factors into the CNS. Also, Copaxone, since it seems to have the least bad side effect profile and iirc Cort mentioned it was best at reducing fatigue in MS.
     
    Last edited: Jun 4, 2017
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