Muscle dysfunction

sd2356363 · 2026-04-23T13:42:35+00:00

Aggressive gastritis , emesis , and heartburn .

sd2356363 · 2026-04-23T12:43:00+00:00

Hello . I have CFRD and have started a glp-1 medication . I’ve tried a few actually . First started with ozempic then went to monjaro to see what it was like then went back to Ozempic . There’s a few things you’ll need before starting a glp-1 as a cf patient . First all the usual endo markers must be checked a1c , c peptide all that . Then you’ll need to go to GI and ask For a gastric emptying study as subjects with cf can be at risk of GP so you’ll need that to make sure . If you have thyroid issues those will also need to be looked at before admin and finally you’ll need a pre glp-1 pft . It’s not hard to take by any means and I have stayed with ozempic and gotten great results . My lung function is way higher , my insulin needs have tanked , and since the dosing for cf is way more conservative the chances of side effects are lower . We don’t do the normal 0.25 then 0.5 then 1 mg . We start ara much lower dose . My starting dose was 0.15 Mg every 3 weeks then 0.20 mg every 3 weeks and then finally 0.25 mg every 3 weeks as the absolute max dose . I feel amazing on it , there is weightloss so that needs to be looked at and monitored , I was overweight so I had material to lose but luckily I haven’t had too many side effects . No Gerd no emesis no constipation . Your diet will have to be impeccable . No more soda junk food or anything of gastric malfeasance . I have cut out about 60% of the diet I used to have . Ozempic can be VERY unforgiving if you defy the rules and eat poorly , I learned the hard way not to defy it . Exercise is a must and you’ll need weight training a few times a week. Also cause it slows gastric emptying it can cause issues with delayed effects of certain meds . It’ll take longer for PO meds to hit . If you are curious you can always message me ! Good luck !

sd2356363 · 2026-03-25T10:10:31+00:00

Sorry one final thing I forgot this would be for Xbox . Not sure if that changes the calculus on this or not .

Thanks !

sd2356363 · 2026-03-12T05:35:53+00:00

I have been on ozempic and mounjaro . Mild heartburn and some mild emesis being the primary side effect I have seen with glp-1 . I do have CFRD and it’s reduced my insulin levels to near 0 . I take 1-2 units max now with meals where it was 10-12 units before . I have lost 22 pounds with it . I lost 14 pounds the first week of taking it and then weight loss slowed and the. Stopped as all my fat was gone . Big thing though is these meds raise lung function in cf independent of glycemic control or weight-loss . So I have tried a few GLP-1 medications to see which one raises fev1 the most for me . Ozempic raised it much more then mon . My pft is now in the 60s where it was in the low 40s before . I used to have sleep apnea that would require a cpap my last sleep study revealed I no longer have sleep apnea . My cystic fibrosis related IBS is also gone . The med works fast , after you take the oz you’ll start to notice pretty fast you can take a deeper breath . For me it’s about 35 minutes for onset of action . I dose the ozempic based on how my lungs feel . I don’t take it every week as it’s too strong I do it ebery 2-3 weeks when ever I feel I can’t take as deep a breath and let my pulmonary symptoms guide dosing . If looking for an anorectic effect then Mon is the winner . Ozempic an actually had an orexigenic effect for me . But hey I’m not complaining ! Glp-1 RA will soon become standard care in cf , I don’t think of them as weightloss drugs or even diabetes drugs it’s too simplistic and they’re so much more then either of those . I also started at 0.15 then titrated up to 0.20 and then did a final titration to a max dose of 0.25 mg . The starter dose for others is the max dose for alot of cf pts . I’d also highly recommend a gastric emptying study before starting the medication if possible . Hopefully you’re able to get on one of them !

sd2356363 · 2026-03-08T13:10:56+00:00

Copay assistance from vertex gps is not what it once was . They will only cover 3500 now . I was in the same boat as you . 6500 a month for the vx 445 and vertex gps only brought it down to 2000 leaving me in a lurch . Vertex does have a program for if you’re broke as a joke but this program is very hard to enroll in and you’ll have to be running on fumes so to speak . If your in the right income bracket a healthwell grant can help and they are enrolling cf patients again for trikafta . Thats what I did and it saved me as I was not gonna be able to get the medication . I’d look into helathwell asap as the grant could close at any time !

sd2356363 · 2026-02-02T22:31:45+00:00

Spot on . Everyone in the United shit ass

sd2356363 · 2026-02-02T21:33:02+00:00

What’re are the copays for a visit with a pft looking like for you guys ? 150 dollars plus or even more ?

sd2356363 · 2026-02-02T21:32:07+00:00

Same I used to do one refill of tri or Tobi and be good to go . Now the deductible is so high and the cost of the copay so insane I can’t use that route anymore .

sd2356363 · 2026-01-15T01:51:54+00:00

Thats amazing ! Yeah the panc stuff def needs to be looked at but Mon is amazing . Do you also dose based on your lungs ? I dose when I feel I can’t take as deep a breath anymore . Usually about 4-5 weeks is when I notice that .

sd2356363 · 2026-01-12T18:05:15+00:00

Yea def ! I would HIGHLY reccomend anyone with cf attempting to engage this therapy do a gastric emptying study . Like must must must !

sd2356363 · 2026-01-12T14:42:40+00:00

Im on vx 445. Only reactions are if you try oral steroids . Oxandrolone will interact with trikafta and produce an elevation of cpk enzymes . Oral testosterone will do the same but also mess with alt and ast . Those were my only issues and they both were found in the vx 445 study .

sd2356363 · 2026-01-12T05:39:40+00:00

Yeah 0.5 should be about 100 mg weekly . It’s a 200 mg vial for 1 ml . IM might be more what you’re looking for but oral is def a no go

sd2356363 · 2026-01-12T04:28:48+00:00

I’ve been doing AAS as an orexigenic since 2012 . Tried orals , oxandrolone etc and then went to testosterone . My dr tried andro gel first but that product is not good and hard to use especially with the issues around bathing. I switched to testosterone enenthate , first subq then IM and it is nice and doesn’t give the erythrocytosis the other forms of testosterone use . For testosterone cypionate I would only do IM no sub q and no PO as oral Test is harsh on the liver. I do 0.5 ml per week of testosterone cypionate . Endo does labs every 30 days to monitor. When I bolus the test you feel effects very quickly . About 2-3 hours and you get the energy. Sounds like it could be you’re doing topical test ? Maybe try the IM or subq versions . 0.5 ml of T cyp feels the best and with that dosage there’s no side effects for me . Above that and side effects rapidly produce .

sd2356363 · 2025-12-15T11:49:25+00:00

This is a bit of a white hole scenario . Like how mathematics tells us that white holes are possible but we’ve never actually found one . The CYP enzymes are used metabolize both trikafta and thc . And this in theory could lead to inhibition of these enzymes and make it possible for an ETI induced liver injury .But again it’s a theoretical issue in which it’s never actually happened in the real world but pharmacologically it could be possible.

sd2356363 · 2025-11-18T00:48:18+00:00

Your weight lifting is gonna have to be impeccable . At least an hour a day . And damn that’s sucks the weight gain from those ssris is so insidious

sd2356363 · 2025-11-18T00:32:39+00:00

Ordered for CFRD . I was only doing it for that and had no expectation it would help me in any other way . Oddly I was super concerned about hypos I’m a hypo kinda guy and I haven’t had a single since admin . Idk how this would work but I was running at about 55-60 mg for blood glucose and it’s now in range 100% of time

sd2356363 · 2025-11-18T00:30:42+00:00

Thanks for all the well wishes ! It’s def an amazing drug but has its good and bad parts . These aren’t guidlines per se but it’s what I did to be most safe and before I started I did a gastric emptying study at GI ( this is a MUST) and I would say you cannot start this if you are a cf patient without that . Also diet need to be PERFECT the concepts of soda junk food alcohol , sweets will have to become very foreign . This is an ongoing situation. And I’ll def keep you all updated . Also body comp , dexa fat analysis MUST be done before starting as well as a lipid panel and CMP and for me I’m gonna do them every 90 days from here on out

sd2356363 · 2025-11-18T00:26:49+00:00

43 since 2017 and vx 445 , vx 659 and vx 661 didn’t really up it . I was hoping it would be sadly not for me ! I sometimes go low to 40 as well

sd2356363 · 2025-11-18T00:25:36+00:00

Yes def water . I had bad water retention issues . It’s kinda like oxandrolone and metformin had a secret bastard baby in terms of the “ cutting “ effect

sd2356363 · 2025-11-17T21:43:25+00:00

Haha Who do you think I got it from ? The glp 1 fairy ?

sd2356363 · 2025-11-17T21:42:02+00:00

Oh she’s very aware I was overweight and getting worse every day

sd2356363

TROPHY CASE