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Thread: Abatacept/Abrogate clinical trial

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    Default Abatacept/Abrogate clinical trial

    Hi all, has anyone else started this trial? I am the first one at Addenbrookes to start and just wondering how other people have taken to the trial?
    I am now in week 7. Its odd getting used to injecting yourself weekly - I feel very grown up and responsible!!
    I've got no idea if I have the drug or placebo but the boost of pred certainly made me feel awesome for a few weeks. Now I am weaning down and I feel like I've been hit by a truck. I've been told to carry on tapering down as I've been off pred for many years now. Hoping once the pred is out of my system I'll feel the effects, if I am injecting the actual drug and not the placebo!
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Default Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Hi,
    I'm not in the study but congrats to getting in.

    Phase III Avacopan Clinical Trials are expected to be published in December.
    https://clinicaltrials.gov/ct2/resul...e=&city=&dist=
    I believe that med is supposed to be a Prednisone Replacement or reducer.
    The mechanism of action looks promising to me.

    If tapering too fast from pred I can get that "truck" ran me over feeling too.
    It helps if I exercise, green drinks, local org veggies, restorative sleep and meditation.
    Sometimes the drugs make it too hard to do all the above and it becomes a "hang in there" protocol.

    Docs don't always know how fast someone can taper since certain meds affect systemic sensitivity.
    I adjust pred differently when on Cytoxan, Rituxan, Azo, Mtx... vs not being immuno suppressed w pred.

    Ton of good links for advanced treatment of Wegeners here https://rarediseases.info.nih.gov/di...h-polyangiitis

    Best wishes,
    Tom
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

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    Default Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Quote Originally Posted by Green Grass & High Tides View Post
    Hi,
    I'm not in the study but congrats to getting in.

    Phase III Avacopan Clinical Trials are expected to be published in December.
    https://clinicaltrials.gov/ct2/resul...e=&city=&dist=
    I believe that med is supposed to be a Prednisone Replacement or reducer.
    The mechanism of action looks promising to me.

    If tapering too fast from pred I can get that "truck" ran me over feeling too.
    It helps if I exercise, green drinks, local org veggies, restorative sleep and meditation.
    Sometimes the drugs make it too hard to do all the above and it becomes a "hang in there" protocol.

    Docs don't always know how fast someone can taper since certain meds affect systemic sensitivity.
    I adjust pred differently when on Cytoxan, Rituxan, Azo, Mtx... vs not being immuno suppressed w pred.

    Ton of good links for advanced treatment of Wegeners here https://rarediseases.info.nih.gov/di...h-polyangiitis

    Best wishes,
    Tom
    Thank you Tom,

    My son is in this trial. As he still has flare ups they are looking to double the dose of Avacopan. I am curious to see what the phase three results look like.

    Sent from my moto z4 using Tapatalk

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    Default Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Thanks Tom for your feedback. I am still feeling very much like I have been hit by a truck. Fatigue is ever present. I have only a few more weeks left on the pred and the taper gets slower now so I am really hoping for some improvement.

    There are only 60 people in this trial worldwide so was hoping a few were on here and we could support each other.

    I really hope this works for me. I am starting to run out of options and want to avoid cyclo for as long as possible. It would be my last resort drug. I am on MTX but it doesn't hold remission for me, I am also on hydroxychloroquine which I have only started a few months ago. I have tried and reacted to Aza and mycophenolate. I was on RTX and this was the wonder drug but I started reacting to it last year and it was starting to loose its effectiveness anyway. I have only sinus involvement so I do know how lucky I am but I have honestly had the worst 18 months since diagnosis 9years ago. I have been so uncontrolled that I now have a second hole in my septum.

    I don't want to accept that this level of fatigue is my new normal but I am starting to worry that it is. In the new year I should get some more answers as I will have been on the Injections long enough to tell if it is working/ if I am in remission.

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