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Dubya_B

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Dubya_B last won the day on October 12 2018

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About Dubya_B

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  1. This may sound like begging because it is. For the sake of defining what "Post-Accutane Syndrome" really is through (totally anonymous) responses to scientifically validated questionnaires, could you please complete the patient symptoms survey provided by propeciahelp.com? https://forum.propeciahelp.com/t/post-drug-syndrome-survey-faq-survey-now-live-please-participate/34482 .
  2. That was quite the bold move to try finasteride. There were probably 4-5 post-Accutane patients who posted recovery or improvement stories in this thread after fin, so it is a dangerously appealing treatment. I've thought about trying it myself, but can't bring myself to. How much finasteride did you take and for how long? Did you notice any brief rebound improvement? Have you improved at all since stopping finasteride?
  3. It has been mentioned twice in the last 2 pages how inefficient trying to communicate in this long thread is. It's actually quite surprising it has survived so long. There are two far better places for those suffering from post-Accutane side effects: Discussion of persistent sexual, neurological, and physical side effects from multiple drugs, including Accutane: https://forum.propeciahelp.com/ Discussion of persistent sexual and neurological side effects from
  4. The new post-drug patient survey has been unveiled on propeciahelp. https://forum.propeciahelp.com/t/post-drug-syndrome-survey-faq-survey-now-live-please-participate/34482 Even if you don't have sexual side effects, please participate. We are attempting to finally characterize some of these post-drug conditions to sort out which groups have what symptoms and find any unifying factors among our groups of patients. If you sign up, then post a new topic describing your
  5. ED is more closely related to a blockage of mojo, rather than blockage of chakra. A thorough thyroid panel would be TSH, T3, T4, Free T3 and T4, anti-thyroid antibodies, calcitonin, and parathyroid hormone. Reverse T3 could be tested, but I'm not sure there is much utility in that.
  6. I often ask myself this same question too. Will there ever be an end to this misery. It's been nearly 20 years of a pretty messed-up life that I would rather have not dealt with. As @hatetane posted above, there is currently ongoing research into post-finasteride syndrome that will uncover the cause and potential treatment. This is slow-going, but there is a very good chance it will translate into a way to help those of us who have taken Accutane and been left with PFS-like symptoms, like h
  7. @RafCej , there is possibility the feeling of head pressure is intracranial hypertension, a.k.a pseudotumor cerebri. There have been a few people mention being diagnosed with this condition and it is a known side-effect of retinoid therapy.
  8. @TrueJustice It mentions decreased blood flow to the orbitofrontal cortex. I'm not sure how these doctors DX'ed organic brain damage except for this difference in blood flow between the post-Accutane patients and normal variation in healthy subjects? It can't be compared to "chemo brain", which is simply a description of mental symptoms after chemotherapy. I looked further into these SPECT scans, and they have a reputation of being unreliable. MRI is usually suggested in their place. .
  9. Has anyone here seen more detailed information on this article? Werner B, Buajordet I, Madsen S. Cerebral symptoms after treatment with isotretinoin. Pharmacoepidemiol Drug Saf. 2006;15:S263 It is included as a citation in several other relevant studies, but I can't find a more detailed description from where this information came from. Is anyone aware of a post-Accutane patient who discussed having one of these SPECT scans performed?
  10. Never had brain zaps except a few times when I tried buspirone. Some of the SSRI folks mention having this side effect when they are taking it, or in the short-term after withdrawal. What were the doctor's comments on your MRI. What did it show?
  11. A recent story on the Daily Mail website discusses several of the recent regulatory actions regarding Accutane and includes the story of a man who has been suffering sexual dysfunction and depressive symptoms since taking Accutane years ago. https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html
  12. How can we not place blame and guilt? There was discussion in the UK parliament 4-5 years ago to fund research into Accutane side-effects. The parent's group fought, while the vast majority of the people who claim their lives were ruined by this drug remained silent. This is like being shipwrecked on an island, trying to send out an SOS, with the other survivors refusing to help build the fire.
  13. Who cares what is posted here? Nobody who matters in changing warnings on drug labels cares, or sexual dysfunction and the risk of other persistent side effects would have been added years ago. The FDA certainly doesn't care what is said here. Commenting in the link posted isn't going to change the world but is better than wasting time theorizing endlessly. Some people seem to not comprehend that begging for medical help, or simply recognition, for sexual side effects from Accutane will ge
  14. Seriously!? 2-3 people have mentioned sexual side-effects on this page of the thread and can't be bothered to comment on the FDA petition? This can be done using "anonymous anonymous" as a name. https://www.regulations.gov/docket?D=FDA-2018-P-4088 If you are sick of going to doctors and hearing that it is "all in your head" because sexual side effects aren't listed, at least do this much to help.
  15. A citizens petition to the FDA to add warnings of sexual side effects to the Accutane/Isotretinoin label was recently submitted by Data Based Medicine Americas (RxISK). https://rxisk.org/petition-about-isotretinoin-sexual-side-effects/ A copy of the petition (containing supportive data from adverse event reporting) can be found here: rxisk.org Bottom line; Accutane was associated with more reports from children experiencing sexual side effects than any other drug! Sup
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