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Psoriasis Club › HealthHealth Boards › Psoriasis In The News v
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Amgen dump brodalumab after some patients had suicidal thoughts.

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Amgen dump brodalumab after some patients had suicidal thoughts.
Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#11
Sun-27-03-2016, 11:45 AM
(Sun-27-03-2016, 10:52 AM)birdman Wrote: Hi bill. I see you've tried reaching out to itchy scratchy.  If you did this on my behalf then I can't begin to thank you enough.   Bigarm  Nor can I stress enough the importance that I get in contact with this individual. I assure you and anyone that I have only the best of intentions.

Hello Birdman, unfortunately we get this a lot. People join and post but then we never see them again. ItchyScratchy joined us on the 07 Jan this year and his last visit was 08 Jan. He only made two posts, the one you answered here and this one: Leflunomide experience ?

I was going to suggest that you try sending him a PM and although he wouldn't be able to answer till he has made 5 posts he may have got a notification of a new PM. However he has turned off all communications in his profile, so he won't be getting any notifications. He's also not subscribed to the newsletter so there is no point trying to contact him via that.

Obviously I do have access to his Email address, but I'm not prepared to pass it on to anyone or contact him via email as he has chosen to not receive Emails from Psoriasis Club.

So, I'm sorry but unless he visits and sees this thread there isn't much hope in him answering you or Bill I'm afraid.
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#12
Sun-27-03-2016, 12:20 PM
(Sun-27-03-2016, 11:45 AM)Fred Wrote:
(Sun-27-03-2016, 10:52 AM)birdman Wrote: Hi bill. I see you've tried reaching out to itchy scratchy.  If you did this on my behalf then I can't begin to thank you enough.   Bigarm  Nor can I stress enough the importance that I get in contact with this individual. I assure you and anyone that I have only the best of intentions.

Hello Birdman, unfortunately we get this a lot. People join and post but then we never see them again. ItchyScratchy joined us on the 07 Jan this year and his last visit was 08 Jan. He only made two posts, the one you answered here and this one: Leflunomide experience ?

I was going to suggest that you try sending him a PM and although he wouldn't be able to answer till he has made 5 posts he may have got a notification of a new PM. However he has turned off all communications in his profile, so he won't be getting any notifications. He's also not subscribed to the newsletter so there is no point trying to contact him via that.

Obviously I do have access to his Email address, but I'm not prepared to pass it on to anyone or contact him via email as he has chosen to not receive Emails from Psoriasis Club.

So, I'm sorry but unless he visits and sees this thread there isn't much hope in him answering you or Bill I'm afraid.

Oooh, I thought a pm was an email. Well I completely respect that Fred. And I would want you to respect my privacy in the exact same way.  That said however, people join this forum to share and there are always exceptions. I will leave it alone for the moment and revisit perhaps after I gain your trust. But the degree of potential benefit to itchy scratchy wanes with time. If u have the ability to relay merely that he is sought, what could be the harm? Maybe Just tell him to check his post. The situation is not dire as of yet.
Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#13
Sun-27-03-2016, 12:27 PM
(Sun-27-03-2016, 12:20 PM)birdman Wrote:
(Sun-27-03-2016, 11:45 AM)Fred Wrote:
(Sun-27-03-2016, 10:52 AM)birdman Wrote: Hi bill. I see you've tried reaching out to itchy scratchy.  If you did this on my behalf then I can't begin to thank you enough.   Bigarm  Nor can I stress enough the importance that I get in contact with this individual. I assure you and anyone that I have only the best of intentions.

Hello Birdman, unfortunately we get this a lot. People join and post but then we never see them again. ItchyScratchy joined us on the 07 Jan this year and his last visit was 08 Jan. He only made two posts, the one you answered here and this one: Leflunomide experience ?

I was going to suggest that you try sending him a PM and although he wouldn't be able to answer till he has made 5 posts he may have got a notification of a new PM. However he has turned off all communications in his profile, so he won't be getting any notifications. He's also not subscribed to the newsletter so there is no point trying to contact him via that.

Obviously I do have access to his Email address, but I'm not prepared to pass it on to anyone or contact him via email as he has chosen to not receive Emails from Psoriasis Club.

So, I'm sorry but unless he visits and sees this thread there isn't much hope in him answering you or Bill I'm afraid.

Oooh, I thought a pm was an email. Well I completely respect that Fred. And I would want you to respect my privacy in the exact same way.  That said however, people join this forum to share and there are always exceptions. I will leave it alone for the moment and revisit perhaps after I gain your trust. But the degree of potential benefit to itchy scratchy wanes with time. If u have the ability to relay merely that he is sought, what could be the harm? Maybe Just tell him to check his post. The situation is not dire as of yet.

I have answered your other post [Group Specific]

PM = Private Message you can find them in the menu above.

You are sounding more like a Lawyer by the minute, so unless you tell us more how do you expect to gain our trust?

And NO I will never go against a members privacy.
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#14
Sun-27-03-2016, 12:45 PM
(Sun-27-03-2016, 12:27 PM)Fred Wrote:
(Sun-27-03-2016, 12:20 PM)birdman Wrote:
(Sun-27-03-2016, 11:45 AM)Fred Wrote:
(Sun-27-03-2016, 10:52 AM)birdman Wrote: Hi bill. I see you've tried reaching out to itchy scratchy.  If you did this on my behalf then I can't begin to thank you enough.   Bigarm  Nor can I stress enough the importance that I get in contact with this individual. I assure you and anyone that I have only the best of intentions.

Hello Birdman, unfortunately we get this a lot. People join and post but then we never see them again. ItchyScratchy joined us on the 07 Jan this year and his last visit was 08 Jan. He only made two posts, the one you answered here and this one: Leflunomide experience ?

I was going to suggest that you try sending him a PM and although he wouldn't be able to answer till he has made 5 posts he may have got a notification of a new PM. However he has turned off all communications in his profile, so he won't be getting any notifications. He's also not subscribed to the newsletter so there is no point trying to contact him via that.

Obviously I do have access to his Email address, but I'm not prepared to pass it on to anyone or contact him via email as he has chosen to not receive Emails from Psoriasis Club.

So, I'm sorry but unless he visits and sees this thread there isn't much hope in him answering you or Bill I'm afraid.

Oooh, I thought a pm was an email. Well I completely respect that Fred. And I would want you to respect my privacy in the exact same way.  That said however, people join this forum to share and there are always exceptions. I will leave it alone for the moment and revisit perhaps after I gain your trust. But the degree of potential benefit to itchy scratchy wanes with time. If u have the ability to relay merely that he is sought, what could be the harm? Maybe Just tell him to check his post. The situation is not dire as of yet.

I have answered your other post [Group Specific]

PM = Private Message you can find them in the menu above.

You are sounding more like a Lawyer by the minute, so unless you tell us more how do you expect to gain our trust?

And NO I will never go against a members privacy.

Lol. I'm a chippy mate!!!  But thanks for the lawyer comment. Normally I'd be quite offended.
ItchyScratchy Offline
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#15
Sun-27-03-2016, 13:32 PM
(Sun-27-03-2016, 10:52 AM)birdman Wrote:
(Sun-27-03-2016, 05:14 AM)Bill Wrote: Welcome ItchyScratchy. How long did the trial go for before it was axed? How long did the brodalumab take to work for both p and psa? Also, when you say clear and no psa, does that mean no psoriasis and no pain? My apologies for the interrogation, but as the drug is new it is good to have a comparison with other drugs. I have reservations about how truthfully pharmaceutical companies portray the efficacy of their wares, so it would be nice to hear it from the horse's mouth.

Cheers,

Bill

Hi bill. I see you've tried reaching out to itchy scratchy.  If you did this on my behalf then I can't begin to thank you enough.   Bigarm  Nor can I stress enough the importance that I get in contact with this individual. I assure you and anyone that I have only the best of intentions. But, Bill, to answer your questions from my own experience this drug brought me to 99 percent clearance in under 12 weeks and sustained it for two years at which point it was canceled.  you're right to question the data, but in the case of this particular drug - It's all that and a bag of chips.

I'm back.  What's so important?  Did not get b at b and b...but do love alliteration. Also confirm clearing 100% in under 12 weeks. And the psa symptoms abated more quickly. It was all that...never got a bag of chips though. ?
I was about halfway through the 5 year trial when it was pulled.
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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#16
Sun-27-03-2016, 14:08 PM
Thank you very much, Birdman. I have been on dimethyl fumarate at varying doses since November 2012 and have gone from 30% to 40% to about 0.2% of inactive coverage. And what has gone has gone. None of that "You can see where it used to be." stuff. Gone and good riddance to it. So it is of great interest to me to have comparisons. Did you have psa as well, and if so how well was it controlled? I had plenty of pain which has receded to the extent that I no longer take nsaids for it. Almost nothing peripherally, just a bit of stiffness when I make a fist, especially the pointers. Sciatic pain gone, and I no longer wake in pain, but I still get pain and limited movement from the mid-lumber vertebrae upwards. Mind you it has improved a good deal and I am optimistic that I will keep progressing, but I still have a way to go. Psoriasis seems to be managed abysmally the world over. People often seem to be left untreated or badly treated, and worse are equally oblivious to the fantastic treatment available. I am pleased you have had good treatment but think your dismissal a bit mercenary; A bit like chucking someone out of a wheel chair.
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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#17
Sun-27-03-2016, 14:16 PM
Thanks, Itchy. Psa is the biggy, and to get rid of it quicker than the p is amazing. What a pack of bs pulling the plug on you guys.
mataribot Offline
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#18
Mon-28-03-2016, 18:37 PM
(Sun-27-03-2016, 05:14 AM)Bill Wrote: Welcome ItchyScratchy. How long did the trial go for before it was axed? How long did the brodalumab take to work for both p and psa? Also, when you say clear and no psa, does that mean no psoriasis and no pain? My apologies for the interrogation, but as the drug is new it is good to have a comparison with other drugs. I have reservations about how truthfully pharmaceutical companies portray the efficacy of their wares, so it would be nice to hear it from the horse's mouth.

Cheers,

Bill

If we go by you criteria there wouldn't be any drugs for anyone to take. The real question here is if the drug causes depression or it's just dumb luck that a few reported it.
Caroline Offline
You must hurry if you ever want to catch a chicken...
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#19
Mon-28-03-2016, 19:48 PM
(Mon-28-03-2016, 18:37 PM)mataribot Wrote:
(Sun-27-03-2016, 05:14 AM)Bill Wrote: Welcome ItchyScratchy. How long did the trial go for before it was axed? How long did the brodalumab take to work for both p and psa? Also, when you say clear and no psa, does that mean no psoriasis and no pain? My apologies for the interrogation, but as the drug is new it is good to have a comparison with other drugs. I have reservations about how truthfully pharmaceutical companies portray the efficacy of their wares, so it would be nice to hear it from the horse's mouth.

Cheers,

Bill

If we go by you criteria there wouldn't be any drugs for anyone to take. The real question here is if the drug causes depression or it's just dumb luck that a few reported it.

Sometimes there are just one or two reported cases while thousands benefit from it. This also holds for 2 to 3 cases of PML in relation to DMF, or better... in relation to lymphoma (or lyphonemia, or whatever they call low lymph's) and not following a decent protocol.
There is no statistical proof, just these occasional cases, which is far from a scientific attitude.
Bill Offline
100 + Member I Just Cant Stop !

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#20
Tue-29-03-2016, 11:01 AM
I dont have any specific criteria for approving drugs. As you know, my drug of choice is an industrial chemical purchased from Shanghai with which I self-medicate with an experimental dosage. How many regulatory authorities would approve of this regime? I am sure that it would meet the same encouragement as my intention to make my own DMF in a backyard drug lab, with which I will be able to make a year's supply of drug for a raw material cost of around $5. Like everyone here I am all for having as many effective treatments as possible, but I also believe that protecting patients is paramount.

Was brodalumab dumped for the reason given, or are there undisclosed reasons?

Cheers,

Bill
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