BoscoPiko Posted June 30, 2023 Share Posted June 30, 2023 Not sure if this is important or not but figured I would speak to it. Even though my weight is in line, my body tends to not produce enough insulin. I am not diabetic or anything of that nature so it has thrown a few Dr. for a loop. I was heavy for my size at one time but am now 125. Then 180 (big for a 5 six chick) anyhow two months ago I was started on a semaglutide. My stomach rejected it pretty harshly and I started to question the script. I decided to do an experiment. One day on, and one day off. All of my days off resulted in serious shadows. This is very preliminary/conceptual and I've yet to have a definitive response to it. I'm just wondering if anyone else with CH has an issue with insulin creation (non diabetic) that is. 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted June 30, 2023 Share Posted June 30, 2023 No shadows on the days on? Sometimes it seems like the real use for most meds out there was discovered inadvertently when it was noted that they alleviated some unanticipated thing. Thank you for discovering that Semaglitude should be investigated for off label CH prevention, trials starting immediately . You should get credit, royalties, and they should change that ugliest of names to 'Boscofixya' or similar. 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted June 30, 2023 Author Share Posted June 30, 2023 1 hour ago, Bejeeber said: No shadows on the days on? Sometimes it seems like the real use for most meds out there was discovered inadvertently when it was noted that they alleviated some unanticipated thing. Thank you for discovering that Semaglitude should be investigated for off label CH prevention, trials starting immediately . You should get credit, royalties, and they should change that ugliest of names to 'Boscofixya' or similar. LOL.. Well my train of through is the lowering of blood sugar? Not sure if that makes a difference with CH or not. And yea I just realized after reading your response that the name is sorta gross Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted June 30, 2023 Share Posted June 30, 2023 2 hours ago, BoscoPiko said: LOL.. Well my train of through is the lowering of blood sugar? Not sure if that makes a difference with CH or not. And yea I just realized after reading your response that the name is sorta gross See told you, should have letters after her name !!!!!@BoscoPikoMD contributing to medical science again!!!!!! 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 1, 2023 Author Share Posted July 1, 2023 Thanks @Shaun brearleyyour 2 kind. Oddly enough after my last response to @Bejeeber I got a notice from Kaiser and Sutter (my insurance plan providers) telling me that my script would no longer be covered by my insurance and that my script was not being canceled but I would have to foot the bill as my BMI (body mass index) suddenly did not qualify for coverage. As a consolation they advised me where I could have my script filled at my own cost of $1k per 30 day supply. I'm not as upset as I thought I would be as I've learned to have a backup plan for all of these pharma/insurance provider shenanigan's. I suppose I am just bummed that I can't experiment a bit longer. I've had such great success with adhering to some of the methods and means provided to me via this site that I don't care as much about the denial of coverage. (They can go suck a cluster bunny egg, maybe.. hopefully choke on it 2)! Anyhow I am nearing the one year mark ATTACK FREE! I pray I am not jinxing myself but at the same time I am 2 grateful not to share the news! My last attack (only one mind you and not a cycle) was last year on July 3rd. I would be lying if I said I wasn't scared. At the same time my heart swells with pride over the help and much needed support that I have received no where other than here! All of you are the very best!!!! Happy 4th! 4 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 1, 2023 Share Posted July 1, 2023 Going on a year?! Now that's something big to celebrate - Bosco-Independence-from-Beastcapades Day! Belief in jinxes is pure unadulterated superstition. This is my more recently adopted, previously declared intellectual understanding , and I repeat it publicly with intent of keeping so many years of my knocking on wood with crossed fingers habits tamped down. I just hope I didn't jinx the whole thing - wait, DAMMIT see what I mean? Still lots of dejinxification work left to do. 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 1, 2023 Author Share Posted July 1, 2023 Your rt @Bejeeber. Jinks is silly but I'm still learning to navigate..You are a good friend and I appreciate you! I'm making a pot roast (it's taking forever) and getting ready for a movie with my best friend.. no thoughts about Jinks (thanks to you and all the awsome sauce folks on here)..Beastcapade free! I'll say my prayers! 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 1, 2023 Author Share Posted July 1, 2023 2 hours ago, BoscoPiko said: Your rt @Bejeeber. Jinks is silly but I'm still learning to navigate..You are a good friend and I appreciate you! I'm making a pot roast (it's taking forever) and getting ready for a movie with my best friend.. no thoughts about Jinks (thanks to you and all the awsome sauce folks on here)..Beastcapade free! I'll say my prayers! Oh and hi to my amazing friend @Shaun brearley who let's me vacation bicarously through picks of his amazing home land job. Stinker gets to tote folks around to some of the most beautiful places in the world as a job.. gets paid for it! Jelly! 3 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted July 1, 2023 Share Posted July 1, 2023 Bosco-cluster bunny free day , JULY 3RD it's official 2 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 3, 2023 Share Posted July 3, 2023 Okay HERE WE ARE at July 3rd - what 's the verdict @BoscoPiko, did we make it a full year without an attack?! I'm practically assuming so. In light of OldArn's bad news/bad results yesterday, some good news is sorely needed, and I figure that is your jam today. 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 3, 2023 Author Share Posted July 3, 2023 24 minutes ago, Bejeeber said: Okay HERE WE ARE at July 3rd - what 's the verdict @BoscoPiko, did we make it a full year without an attack?! I'm practically assuming so. In light of OldArn's bad news/bad results yesterday, some good news is sorely needed, and I figure that is your jam today. Yes, here we are and so far so good! I feel good and am void of any warning signs... I think I finally made it a full year (never achieved this in all my CH life) 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted July 3, 2023 Share Posted July 3, 2023 Congratulations Bosco!! A year P.F. is grounds for a party! I have issues with Insulin and everything else the pancreas does for us. Mine is due to a medico ignoring the gall bladder in a scan where it was stated to be full of stones and sludge. I had no idea. Anyway, it took ten years to get my mess fixed: Gall bladder removed and I was still having major issues. I did some nasty tests that were sort of ignored by the gastro. My PCP was out for maternity leave and the retired Doc was awesome. She looked at the puter and poked me a good bit and called for a full body CT with contrast. How often do doctors actually poke you now? Hardly ever it seems! It showed that my pancreas had calcium deposits in it from the neglected gall bladder removal that on occasion blocked the bile ducts, along with a bleeding ulcer that had dye spurting out from it. Gastro argued that I did not have Chronic Pancreatitis, but an ulcer. I quote "If you had Pancreatitis, you would be in the hospital!' The ulcer, she treated with pantopraezole, not the standard two antibiotics and a tummy pill!! Our follow-up call did not go well either. She finally admitted that I did have chronic pancreatitis, but had no suggestions for my pain or need to stay home till after 12 everyday due to the inability to digest any foods. My PCP gave me Creon samples. I was able to eat and finally not on the starvation diet from all food being rejected since it did not digest. I gained 20 lbs for which I am most grateful. Being a 'new' drug I presume, Abbvie pays for the medication. I suppose that I may be a guinea pig, but who cares? I can eat without killer pain within two bites and actually have some energy now! Creon replaces the missing digestive juices the pancreas can only manage sometimes. Bottom line is the Creon has not stopped my CH and it supplies insulin for me. May your pain free status last for MANY YEARS!! They just need to quit this mess for some of us! LOL 2 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 3, 2023 Share Posted July 3, 2023 1 hour ago, spiny said: Congratulations Bosco!! A year P.F. is grounds for a party! Now that we're almost recovered from the previous one, time for another PARTY AT BOSCO's !! 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 4, 2023 Author Share Posted July 4, 2023 Well I think it's official. I went from no more than 4 months off to a full YEAR!!! I know things change and the body is good at becoming immune but a win is a win and I feel like a winner! I'm even making chicken for dinner! 1 1 Quote Link to comment Share on other sites More sharing options...
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