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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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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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Re: Abatacept : Pred / Avacopan / Systemic Adjustments
Originally Posted by
Green Grass & High Tides
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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Post Thanks / Like - 1 Likes
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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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Re: Abatacept : Pred / Avacopan / Systemic Adjustments
Hi to anyone reading this.
I wanted to bump this post as i know there are 60 people worldwide on this trial and it would be nice to chat to someone else who is on this trial.
Just to give a brief update i started the trial October 2019 and felt a slight improvement in my symptoms/ bloods improved. Then i flared just before Christmas. I was stopped on the placebo part of the trial and progressed on to the open label Abatacept. I have been like this since the new year, finally finished Pred last week. I found another cause for my fatigue - i had severe vitamin D deficiency so since taking vitamins i am feeling so much better.
I am on the open label Abatacept now until the trial finishes. I had started having headaches so would like to know if anyone else on the trial is having these.
Hoping to see a few replies the next time i log in
"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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Re: Abatacept/Abrogate clinical trial
Does anyone know when this will be available to the general public?
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Re: Abatacept/Abrogate clinical trial
Originally Posted by
me2
Does anyone know when this will be available to the general public?
Hi Me2, the abatacept trial finishes in about a years time. For me in the UK it isnt approved yet for WG but if i take it and it works for me Addenbrookes will put in a good case for me to continue having it but it is not guaranteed. This is only a small trial but if it proves a successful treatment they will put it through NICE and hopefully it can be used by others in the future...but this will be a few years down the line.
"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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Post Thanks / Like - 2 Likes
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