David Healy's RxISK.org now collecting drug adverse event reports

[Altostrata]

Join RxISK.org and enter your report today. https://www.rxisk.org/default.aspx

 

David Healy promises this will be more effective than the FDA's AER system or the UK's Yellow Card system, see http://davidhealy.org/pharmacosis-trigger-algorithm/ .

 

ADMIN NOTE: I cannot answer questions about how to use Rxisk.org. For questions about Rxisk.org, register, log in, and fill out the form here http://wp.rxisk.org/contact-us/

Edited December 23, 2014 by Altostrata
added note

[poodlebell]

Have had an email from Dr. David Healy and hope that others will contribute their stories

 

Have 3 posts about withdrawal on RxISK stories

 

the Antidepressant one is brief and is not a horror story

 

https://www.rxisk.org/wp/index.php?p=425

 

would be great if we can get a few people to add their stories -

 

and out of this I will try to generate some frequently asked questions with answers in a few weeks time

 

David

 

Poodlebell

[squirrel]

Hi Poodlebell I have posted mine.

 

 

Dr Healy is trying to raise awareness to other doctors in the hope that we can determine what may help us all.Is anyone else going to post their story????

[Altostrata]

squirrel, why don't you and poodlebell invite some people to do this through personal messages?

[Nadia]

I'm willing!!

 

As an aside:

 

From the link you posted, Poodlebell: "A graded program of physical and mental activity is helpful for withdrawal, stress syndromes and legacy effects." That sounds right to me.

 

I see this is a strategy in SuperBetter (that someone else posted), and in Morita therapy as well...

[starlitegirlx]

Have had an email from Dr. David Healy and hope that others will contribute their stories

 

Have 3 posts about withdrawal on RxISK stories

 

the Antidepressant one is brief and is not a horror story

 

https://www.rxisk.org/wp/index.php?p=425

 

would be great if we can get a few people to add their stories -

 

and out of this I will try to generate some frequently asked questions with answers in a few weeks time

 

David

 

 

Poodlebell

 

I couldn't find a place to post my story. Is there a link to it? I only saw the mention of one drug withdrawal with about five comments.

[poodlebell]

Hi starlightgirl

 

thanks for saying you will post your story,

 

if you click on the link it takes you into the site and you then click on the antidepressant story, scroll to the end you and get a place to do comments. This is where you write your story.

 

I do hope that others will put their stories on as Dr. Healy is then going to compare out stories and see what he can come up with for helping us.

 

Hi Alto

 

will give it a try

 

poodlebell

[strawberry17]

I posted a comment on there, with a link to my blog.

[fj929]

Dr Healy has a new site and is looking for AD withdrawal stories.

 

https://www.rxisk.org/wp/index.php?p=425

 

 

Of the posts I have seen on there they are pretty horrific people with what appear to be permenant long term issues 7 8 years out. How common is this? I thought just about everyone was better within 4years????????

[Baxter]

Hi, Hawk,

 

Nobody knows how many people are stuck in protracted withdrawal. Nobody is collecting statistics...But people's experience of withdrawal is a broad continuum. At one end, are the folks who follows doc's two-week "taper" and are fine after a week or two of broken sleep, weepiness, other mild symptoms. At the other end are those folks who suffer long term as Healey describes. But you don't know where on the continuum you fall, so my advice is, take it day at a time, and don't borrow trouble by scaring yourself about the worst possible case scenario.

[strawberry17]

Also, don't forget at the other end of the spectrum, the people who have tapered off sucessfully and just getting on with their lives. You only hear from people with problems.

[Altostrata]

It's probably a bell-shaped curve, with most people recovering within x months, but at the slopey right side, fewer people suffering much longer, most likely because they tapered too fast.

 

Since medicine knows next to nothing about controlling the rate of taper, probably there are a lot more people in this basket than need to be there. Severe and prolonged withdrawal is mostly preventable by tapering tailored to individual tolerance.

 

I need to write up my story for Dr. Healy. Thanks for posting this, Hawk.

[Jemima]

Hmmm. I can't seem to reach that page.

[Altostrata]

Rxisk.org seems to be having technical problems. I've sent e-mail.

[poodlebell]

Hi

 

the site is now back

 

poodlebell

[Altostrata]

Dr. Healy has started a withdrawal syndrome survey to gather data for Rxisk.org, go to http://RxISK.org/SoS and enter your information.

 

(If anything seems confusing, send the Rxisk folks a note, they want to know how well this is working.)

 

RxISK has added a Symptoms on Stopping (SoS) Zone to highlight and collect data on the side effects patients can experience when stopping a medication. "While many of us associate withdrawal with stopping things like cigarettes, heroin, or sleeping pills, we may not realize that commonly used prescription drugs for conditions such as high blood pressure, cholesterol, indigestion, and depression have withdrawal effects that can range from mild rebound symptoms to life-threatening crises", says RxISK Chief Medical Officer Dr. Dee Mangin.

[Jemima]

I finally did it, but I must say that questionnaire is tedious and cranky, and they misspelled "withdrawal" (withdrawl). I don't see any way to contact the staff.

[Altostrata]

Their Contact Us is w-a-a-y at the bottom of their pages: http://wp.rxisk.org/contact-us/

[strawberry17]

I filled in something a few months ago on a form on the RXISK site about my withdrawal experience and I agree with Jemima it was a horrible cranky thing to fill in and I almost lost the will to live.

[Altostrata]

I agree. Please write them.

[Altostrata]

From an announcement sent out by Dr. Healy:

I am pleased to announce the relaunch of SSRI Stories, a website that identifies media stories (newspapers, TV, scientific journals) in which prescription antidepressants may be linked to a variety of adverse outcomes, including violence.

The new SSRIStories.org was created by a team of RxISK volunteers who wanted to build on the legacy of Rosie Meysenburg. Rosie and several colleagues created and maintained the original SSRI Stories website until her death in March 2012.

Starting with the original base of 4,600 stories, the team has updated the look and feel of Rosie's website, added more than 400 stories, and developed a classification system so that users can search for stories by category.

Plans are in the works to add a customized Google search feature, which will be fully functional when every story has been classified. (We expect to be finished late 2014.)

Legacy content has been preserved with its original formatting and is available under the Archives menu. Web links to these stories will continue to work they way the used to.

We welcome your feedback about the new website - especially the classification categories - and encourage users to send us stories they feel should be included.

Thank you for your support.

[Aria]

How wonderful Rosie's SSRI Stories are being carried on with this new site. I have to wonder if I'd known more about the psychiatric drugs I was on from online sources I'd known sooner what I know now?

 

Thank you, Alto.

[Altostrata]

bump

[Nomoreheadmeds]

ive tried this site its always having problems when i visit.Emailed them no reply ?