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About Dubya_B

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  1. Creatine Kinase (CK) is often checked alongside ALT and AST when ALT and AST are elevated. High CK, along with elevated ALT and AST, appears to be an indicator of potential muscle or brain damage. Not sure you have had fatigue and muscle pains along with the personality changes since Accutane? But testing CK might be worth considering since it has been found to be elevated in patients taking isotretinoin who suffer myalgia/myopathy (muscular pain/disease). A. M. Heudes and L. Laroche, “[Muscular damage during isotretinoin treatment],” Ann Dermatol Venereol, vol. 125, no. 2, pp. 94–97, Feb. 1998. E. Chroni, A. Monastirli, and D. Tsambaos, “Neuromuscular Adverse Effects Associated with Systemic Retinoid Dermatotherapy,” Drug-Safety, vol. 33, no. 1, pp. 25–34, Jan. 2010. There are also loads of case reports of elevated Creatine Kinase in Isotretinoin patients suffering from myopathies. You might also want to contact Mario Vitali regarding the liver damage angle. .
  2. A few of us who wrote to the European Medicines Agency received responses. Their replies basically amounted to "We will take your statements regarding Ro/Accutane into consideration." They also stated the review of the drug is still ongoing. ...Not much, but it's better than nothing. @macleodGood to know you found something that might be treatable. There was a guy who posted here long ago, Babis, who lost much of his pituitary function after Accutane. He said he felt good again after starting HRT for various hormone deficiencies. There's hope for you. .
  3. So your test was indicative of spinal cord, or other nerve, damage from Accutane? What were your doctor's thoughts on this? .
  4. Well folks, this is probably the last chance you may have for years to help get your side-effects recognized. The European Medicines Agency review of RoAccutane is set to happen this week: https://www.lastingsides.org/accutane/european-medicines-agency-to-review-roaccutane Much gratitude to those of you who went through the trouble of sending an email.
  5. DAVID is currently working but a pain in the ass to use and quite a bit antiquated. PANTHER is easy to use and is maintained by the Gene Ontology Consortium (GO) If you have another few minutes, paste the gene list into the text box on the homepage, select Homo sapiens, then select the analysis you want to run: MSMB COL1A1 HAO2 HSD3B1 THEDC1 SLCO4C1 MLSTD1 PLA2G7 FADS1 GLDC GAL PDZK1 FABP7 HIST1H1C FABP7 ALOX15B MUC1 INSIG1 HMGCS1 BG1 SOAT1 FADS2 CRAT MAC30 ZAP128 CHI3L1 APOC1 HSD11B1 TMPRSS11E PECR SAH HGD DHRS9 SRD5A1 CIDEA SEC14L4 ME1 PDE6A NSDHL ACAT2 FA2H FDPS GK HMGCR http://pantherdb.org/index.jsp Checked out MALACARDS and COREMINE. Will add these to my little online tool collection. Thanks. I haven't noticed an option in PANTHER to search such disease association databases as you linked. KOBAS does this. ...A Skype call some time in the next couple weeks sounds good. Will PM you with times that work for me. I can set aside time on a weekend if needed. Just keep in mind, I only learned the basics of using and interpreting bioinformatics tools in the past few months. No expertise here. About a couple of your previous comments: Getting ANY researcher to look at something a random layman is presenting was described to me as a Herculean task. I asked around about who I should contact to plant the seed for a pharmacogenetic study of Accutane and was told by two PHDs to just do that as my thesis. I don't have the ten years it would probably take to earn a living and go that far. Probably waving money or some asinine award in the face of a university researcher would work since they are often concerned with status and good will won't buy status. Best case scenario might be to have your idea stolen if it is solid. Really good to hear that the PFSF at least is considering communicating with you further. The other point you brought up was whether we have an official organization. We don't. There was RoAccutane Action Group in the UK years ago, but their founder was supposedly issued a gag order as a stipulation in a large settlement with Roche over the death of his son. The chairman of RoAccutane Action Group went silent sometime in the 2000s and committed suicide in late 2014. The whole of our organization is what you see here, a small parents group in the UK, and victims (mostly teenagers and young adults) scattered across the internet with little communication.
  6. @mariovitali Not much to it. Someone showed me how to use several bioinformatics tools, and they have proven invaluable. Briefly, I will explain how to use DAVID and KOBAS. You will surely understand it once you see it in action. Here is a list of genes with >2.0 fold-change from a study called "Temporal changes in gene expression in the skin of patients treated with isotretinoin provide insight into its mechanism of action": MSMB COL1A1 HAO2 HSD3B1 THEDC1 SLCO4C1 MLSTD1 PLA2G7 FADS1 GLDC GAL PDZK1 FABP7 HIST1H1C FABP7 ALOX15B MUC1 INSIG1 HMGCS1 BG1 SOAT1 FADS2 CRAT MAC30 ZAP128 CHI3L1 APOC1 HSD11B1 TMPRSS11E PECR SAH HGD DHRS9 SRD5A1 CIDEA SEC14L4 ME1 PDE6A NSDHL ACAT2 FA2H FDPS GK HMGCR Go to DAVID Functional Annotation Tool: https://david.ncifcrf.gov/summary.jsp Select "Upload" on the left-hand side of screen. Copy/paste the above list into input box and select "Official_Gene_Symbol" from "Select Identifier" drop-down list. Tick "Gene List" radio button as "List Type" You will be prompted to select species. Choose "Homo sapiens" from combo box Select "Background" on the left-hand side of screen. Choose "Homo sapiens" from list and click "Use" Click "Start Analysis" on navigation bar or select "Functional Annotation Clustering" buttons You should see different biological pathways associated with the differentially expressed genes. If you set it to the highest stringency, you can see the cholesterol, sterol, and steroid biosynthetic pathways are strongly associated with the list of genes. I like the reports generated by KOBAS 3.0 better: http://kobas.cbi.pku.edu.cn/anno_iden.php ...but you have to convert the list of gene ID names to Entrez or Ensemble IDs using a tool like this: http://biodb.jp/ I ran the converted list of Ensemble IDs through KOBAS and only used the disease databases. This showed the FADS1 and FADS2 genes, that were both decreased ~3.5 fold in the "Temporal Changes" study, are associated with Crohn's, Ulcerative Colitis, and Inflammatory Bowel Disease. Looking at the literature, decreases in metabolism of these enzymes and decreases in their transcription are strongly associated with IBD sand Crohn's, both supposed side-effects of Accutane/Isotretinoin. The MUC1 (mucin) gene, that promotes maintenance of the mucus-lining of intestinal tract was also associated with these diseases and decreased many-fold in the "Temporal Changes" study.
  7. @mariovitali Good stuff. I've been following the gist of your recent posts and wanted to mention that I went years believing I may have CFS before making a solid connection to using Accutane when the nightmare began. ...Main reason was simply that I was chronically fatigued and in pain from the time I went on the drug until a few years ago, when these symptoms lifted. There didn't seem to be the large subgroup of CFS patients with sexual symptoms and severe depression, as there are with post-Accutane, but I may have missed them. Either way, thanks for enlightening some of the post-Accutane folks on the CFS forums. Have been thinking of collecting sets of differentially expressed genes from studies of Accutane, SSRI, and 5-ari drugs, and running them through pathway analysis tools to find possible overlapping effects: https://david.ncifcrf.gov/ http://pantherdb.org/index.jsp Have you tried this yet, or have you been focused on starting with symptomatology of the patient groups you are looking at? Is the software you have been using available as a web-based application?