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Cochrane Overview of Pharmacological Treatments For Fatigue

Discussion in 'Latest ME/CFS Research' started by Cort, Dec 16, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Conclusions - much more research is needed - which makes sense; fatigue has only recently become a topic of interest. Amantadine, modafinil and methyphenidate are possibilities.
  2. Cort

    Cort Phoenix Rising Founder

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    Amantadine - antiviral interestingly enough

    From Phoenix Rising - http://aboutmecfs.org/Trt/TrtAmantadine.aspx

  3. Cort

    Cort Phoenix Rising Founder

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    Methylphenidate -

    http://aboutmecfs.org/Trt/TrtRitalin.aspx

  4. Cort

    Cort Phoenix Rising Founder

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    Provigil

    Modafinal - Provigil

    http://aboutmecfs.org/Trt/TrtProvigil.aspx

  5. Dolphin

    Dolphin Senior Member

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  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    De Meirleir sometimes gives Amantadine - Cort's note: "antiviral interestingly enough"

    I've taken ritalin and also adderall (4 mixed amphetamines) at low doses. Adderall worked better for me as the 4 amphetamines phase in and out with different half lives--so the ups and downs aren't as sudden. I took them for OI--they worked for me at low doses. I don't take them anymore cause I don't need them so much and want to minimize drugs.

    I also tried Provigal and it felt awful for me. Others like it. It costs the earth!

    Just my 2 cents!

    Sushi
  7. Hope123

    Hope123 Senior Member

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    Interesting angle, Cort.

    Haven't read this article but just to give some context re: care of palliative patients, when it comes to this point, health care professionals often will use medicines off-label, over the usual doses, or with side effects long-term because comfort/ quality of life is the main focus and not length of life, avoiding future co-morbidities, etc.

    For example, they mentioned steroids. Steroids do have acute serious side effects (e.g. delirium for one) but the main concerns for most people taking it long-term are conditions like gut bleeding, immune suppression, osteoporeosis, etc. -- conditions that palliative care professionals are less concerned with since palliative care patients are near the end of life and likely would die before they get those conditions. In addition, there is something called the "double effect" -- e.g. if a drug administered helps with symptoms but as a side effect hastens or causes death, it is deemed OK in both the medical ethics and legal world when it comes to palliative care as long as the patient/ family understand the intent.

    So, the balance of risks and benefits is different.
  8. Cort

    Cort Phoenix Rising Founder

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    I met someone for whom Ritalin worked really well - he was back doing Triathlons although he said he still had other symptoms.. What a group we are!!!

    I did think it was interesting that an antiviral is being considered a possible treatment for fatigue.
  9. wciarci

    wciarci Wenderella

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    Early in my disease my doctor had me on sterioids, they worked for a while and then nothing (except to make me fat and puffy). Then I tried provigil and hated it. It was a very caffinated, nervous energy that did not help concentration at all. B12 is much better :)

    Just my 2cents

    Wendy
  10. Dolphin

    Dolphin Senior Member

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    I know somebody with ME/CFS who was put on steroids who got diabetes within 2 years (she was in her late 40s).
  11. Mette

    Mette

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    steroids in CFS

    It is a question of dose. I have taken steroids for 20 years low dose (prednisone 2.5/5mg a day), and at the same time being aware of need for calcium and Dvit supplementation. I have no problems. Also please remember how common diabetes is in the general population.
  12. Dolphin

    Dolphin Senior Member

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    I'm no expert but can believe what you say (although still think there is a good chance it brought on diabetes in her case). She was on 10mg a day of prednisone.

    I wanted to try thyroid medication as I had a highish TSH (around 5). I read some of the pros/cons of cortisone. Some said the threshold was 20mg hydrocortisone (equivalent to 5mg/day prednisone). Below that wouldn't cause suppression of the adrenals. I took some hydrocortisone for a while.
  13. Mette

    Mette

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    The threshold is the equivalent to the daily production in the body ie 7.5mg/day (non-obese adults). However, the lower the safer, and there is always some suppression of the adrenals. But with CFS we don't know why many patients have those low values of cortisone except there must be some dysregulation somewhere in the system. All I want to say is that one shouldn't be frightend by the steroids if they can help you. In my case it helps lessen rheumatic symptoms (arthritic pain and vasculitis).
  14. August59

    August59 Daughters High School Graduation

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    Man - If I ever got back to walking to the end of my street (300 yards), I would think I was cured! I can't imagine a "triathalon", but he is surely an inspiration!!!!

    If I could afford to go to a doctor, I'm sure I would be better than I am. Having to quit clonazepam, tizanidine and hydrocortisone all in the same month has been rough. I tapered them down over a 2 months time, but still!!
  15. August59

    August59 Daughters High School Graduation

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    There several papers that state that prednisone is 5 - 7 times stronger than hydrocortisone. 10 -15 mg a day of hydrocortisone makes an enormous difference in my daily life. I went to fairly productive to house bound within the 2 months it took me to taper off (stopped tizanidine and clonazepam at bedtime also). I can say that most of it is inflammation and tapering off has changed my thyroid (TSH went up) and testosterone levels (went down) either directly or indirectly.
  16. Dolphin

    Dolphin Senior Member

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    I'm no expert on hydrocortisone - I wasn't reading research papers generally at that stage. The books as I recall said 4 times and I have just checked now and this conversion tool http://www.globalrph.com/steroid.cgi also says 4 times. That was just an aside I made. Although if it is 7 times, then the other poster in this thread who mentioned a threshold of 7.5mg means an equivalent threshold of 52.5mg; their dosage of 2.5-5mg prednisone would then be taking the equivalent of 17.5-35mg hydrocortisone.

    Anyway, I took it for many months, on its own and with thyroid medication as I wasn't convinced low dose hydrocortisone was that different but didn't make much difference to me.
  17. JulieR

    JulieR

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    Provigil

    I've had good success with Provigil. It is indeed hugely expensive, but there are Indian generics at about 1/10 the cost. There are a number of different varietes of generics; for me, Modalert is effective but the others are not, though that seems to vary from individual to individual. Buying from India is scary, but my experiences have been OK.
  18. FunkOdyssey

    FunkOdyssey Senior Member

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    focalin (dexmethylphenidate) is a cleaner version of ritalin that works well for me and enables me to perform my duties at a cognitively demanding job where I would otherwise be completely useless. Amphetamines seem to be harsher on the mind and body and I worry that they would accelerate the course of the disease and cause long-term decline in health. They also seem more disruptive of sleep which I would attribute to their long-half lives.

    I worry that methylphenidate may have negative effects too though. It seems that any drug which increases the availability of dopamine in the CNS accelerates replication of viruses closely related to XMRV (HIV, SIV). Some specific drugs which have been shown to be harmful in HIV and SIV include amphetamine, selegiline, and l-dopa. Another thread either here or on me-cfs forum is discussing this right now. It wouldn't be too much of a stretch to extrapolate those findings to methylphenidate and XMRV. Or maybe it would. Just thinking out loud.
  19. Desdinova

    Desdinova Senior Member

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    I tried Modafinil Provigil my sleep specialist prescribed it. After getting past the sticker shock I gave it a serious try. For me it would either do

    1. Improved my fatigue a noticeable amount, although by no means coming anywhere close eliminating it.
    2. Do nothing at all
    3. Make my brain feel like it was going a thousand miles per hour sometimes boarding on making me feel like I was flipping out.

    Because of the variation in out comes almost day to day and only a slight improvement in my fatigue on occasion coupled with the price it just wasn't worth it. It was a hard decision to make since even the slight improvement was still a welcome one. It was like getting your head up above the water to grab a gasp of air while you’re drowning. It was good but not good enough to save you from your situation.

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