Psa and TW about weight loss/diabetes meds

[1yeartogo]

I’m writing this as someone I jnow is in the hospital fighting for their life. They took medication monjouno or ozempic at the recommendation of doctors. For the last 6 months they have had major stomach issues including Gastroperisis related to taking this medication (there are active lawsuits now but when she took it she didn’t know about this risk) now she is in acute liver failure and may die.

Please please carefully look into these medications. I know I’ve seen them mentioned on this board. Anyone who has good thoughts to send please do…she has a child and is only in her 30s.

Update: she fought hard but died last night age 38. Thank you for your thoughts.

[Deleted]

Oh wow, that sounds very scary for her, her family, and her friends. I’m sending good thoughts for the best possible outcome.

[wanderingback]

Wow I’m so sorry to hear about your friend. Thought to her and everyone in her life.

FYI here’s an article about some of the medications and gastroporesis. I think it’s known (and hopefully explained to people) that the meds essentially cause slowing of the stomach and that can get severe for some people.
www.cnn.com/2023/07/25/health/weight-loss-diabetes-drugs-gastroparesis/index.html

[sent]

Thinking healing thoughts for your friend. I'm sorry she's going through this.

I've been taking medication for diabetes for the past 2 years and would be a candidate for these meds as I could stand to lose at least 40 lbs. But I'm wary because they're still new compared to the old school meds I'm taking.

[Pom]

I am so very sorry for your friend and her loved ones and am thinking of her. How awful.

[wildrice]

I am so sorry your friend is going through that. I hope she pulls through. That's incredibly scary.

I've considered taking one of them, but this has been my hesitation. My sister is suffering from gastroparesis (not from these meds though) and it's been awful and completely life altering (as well as life threatening). There are a lot of benefits I could get from losing some weight, but the risk scares me.

[Susie]

Gastroparesis is no joke, and there's so little that can be done for it, if it persists beyond discontinuing the drug that caused it.  Currently there are no drugs available that are labeled for long term use for treating gastroparesis.  Metoclopramide is one, but it carries a black box warning limiting treatment to <3 months.  Then what?

I have a lot of empathy for people who end up here, having gone into weight loss drug treatment with insufficient advising and/or bad luck.

I'm in a couple FB groups right now devoted to travel/tourism to Costa Rica while I'm planning a vacation there, and I've really cringed at some of the posts about acquiring weight loss drugs there at lower prices/greater availability than the US.  Medical oversight is so, so important.

[Jalapeñomel]

I’m so sorry.

Unfortunately, all drugs can have bad side effects, and you really never know if you’ll experience them when you take the drug. People should definitely consider and discuss the risks with a doctor before taking them.

[yaga]

Jan 28, 2024 13:22:16 GMT -5 Susie said:

Gastroparesis is no joke, and there's so little that can be done for it, if it persists beyond discontinuing the drug that caused it.  Currently there are no drugs available that are labeled for long term use for treating gastroparesis.  Metoclopramide is one, but it carries a black box warning limiting treatment to <3 months.  Then what?

I have a lot of empathy for people who end up here, having gone into weight loss drug treatment with insufficient advising and/or bad luck.

I'm in a couple FB groups right now devoted to travel/tourism to Costa Rica while I'm planning a vacation there, and I've really cringed at some of the posts about acquiring weight loss drugs there at lower prices/greater availability than the US.  Medical oversight is so, so important.

Gastroparesis is awful. I've been dealing with it for a long time.

I refused to try Reglan because of the warnings. My GI doctor agreed with me. I use erythromycin off label when needed, but that's got its own risks. Mostly I have to rely on dietary changes, and my needs are incredibly unpredictable.

I won't lie, I've been tempted by the shots, even passed an online screening from weight watchers (despite my history of gastroparesis, which they specially include in the questionnaire), but realistically I'm fairly certain my stomach would cease working entirely.

Anyway, OP, I hope your friend starts to improve and makes a good recovery.

[4speedy]

Slow gastric emptying is not that uncommon among people who are diabetic and/or obese. It’s possible your friend had the condition prior to starting Ozempic and the medication just exacerbated it. A lot of people don;t even know they have it. Much better screening needs to be done before these weight loss drugs are prescribed.  The tricky part is that the symptoms of slow gastric emptying are acid reflux, regurgitation, etc.  so a lot of doctors think, oh, those symptoms can be cause by excess weight, we better put you on a weight loss drug.  There are tests that can be done to screen for it but they are pretty expensive.

[cuadrado]

I hope your friend is okay.

I'm really concerned about the amount of weight bias that exists in medicine and how this is playing a role in downplaying / dismissing GI issues. I'm seeing it a lot within my field. I know someone in her 30s who has had acute pancreatitis 3 different times while on these meds but her doctor was very insistent that the meds played no role. She stopped taking them and hasn't had an issue since. How does this info get documented or reported if her physician doesn't think they're related?

I'm also concerned that the purpose of taking the medication is getting lost. For example, a patient who is seeing a decrease in their blood sugar into a range that is considered to be well-managed, but their doctor increases the dose because they're not losing weight. Then they can't tolerate that dose and stop it all together. I'm seeing this happen quite a bit.

[shauni27]

interestingly, I am on one of these medications, and I did not know much about this side effect but started having some pain and read in to it. I called my PCP and we immediately did a full blood panel work up and tests and images on my liver and stomach. Thank goodness the pain went away and all of my tests are showing 100% normal.

1yeartogo, please feel free to PM me. I just had a dear friend go through acute liver failure and at the final hour, after being in a coma for multiple weeks, she had a transplant and is on the road to recovery. I was a part of her care team and was involved in a lot of the medical decisions. Please reach out if you have questions or want to talk.

[expectantsteelerfan]

I'm sorry your friend is dealing with this. Good thoughts for them and their family.

I have been on Wegovy for 2 years, under the care of a certified bariatric specialist. I have appointments every 3ish months (they were once a month at the start), and she has reminded me of the possibility of gastroperisis and pancreatitis at every appointment and checked into if I was having any symptoms/side effects and physically palpated my stomach at each appointment. I have my pancreas levels checked twice a year.

I think these drugs can be life-changing, but the danger comes with them being 1. hard to pay for because insurance isn't covering them easily. This makes people seek out compounded versions from online services that aren't monitoring their health regularly and warning them of dangerous symptoms to look out for. And 2. the stigma around taking these meds leading people to seek them out from doctors other than their regular doctor or denying that they are taking them.

Like any other medication, they should only be taken while under the regular care of a doctor. I'm floored to hear that doctors who are prescribing this aren't taking reported symptoms seriously. That luckily hasn't been my experience at all.

[pixy0stix]

Re: compounding pharmacies - you don't know what you're getting with those meds since there isn't even generics of Wegovy et al drugs since they're proprietary. This is another thing that I don't think people are aware of, that pharmacies aren't compounding apples to apples.

ETA - www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/medications-containing-semaglutide-marketed-type-2-diabetes-or-weight-loss

ETA2 - a more opinion type of article on compounding pharmacies - www.science.org/content/blog-post/compounded-and-counterfeit-semaglutide

[Nugget T. Brain, The OG]

I'm on Mounjaro and have lost quite a bit. But I also was going in every 3 months for a full blood panel with my primary, and when my liver values shot up for no discernable reason I was ready to go off if it didn't settle by the next visit. Liver failure is no fucking joke. I'm really sorry about your friend and hope she pulls through and makes a full recovery.

[starlily]

Jan 29, 2024 15:37:28 GMT -5 pixy0stix said:

Re: compounding pharmacies - you don't know what you're getting with those meds since there isn't even generics of Wegovy et al drugs since they're proprietary. This is another thing that I don't think people are aware of, that pharmacies aren't compounding apples to apples.

ETA - www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/medications-containing-semaglutide-marketed-type-2-diabetes-or-weight-loss

ETA2 - a more opinion type of article on compounding pharmacies - www.science.org/content/blog-post/compounded-and-counterfeit-semaglutide

I was just about to mention this, which I had truly no idea about until I heard it on a Maintenance Phase podcast and have never heard mentioned elsewhere.

[somersault72]

I am so very sorry to hear about your friend. That is devastating.

I am in a couple of Wegovy/Ozempic groups on FB and I am shocked at the lack of knowledge many of the people's prescribers have. Or maybe they just don't care. They are starting them on the higher doses due to lack of availability of the lower doses which is dangerous. Other people have touched on the compounding issue, and a lot of the providers just don't seem to have a lot of knowledge about the medication. Like Nugget T. Brain, The OG and expectantsteelerfan my provider monitors my liver and kidney function regularly and asks me a very detailed list of side effects every time I come in (every 3 months now). A lot of these people are given very little (or no) guidance. Pretty much all medications, even OTC medications have side effects.

[shauni27]

1yeartogo, I am so, so sorry to hear this. Sending you and your friend and her loved ones all the love and support. Watching someone die from liver failure is gut wrenching.

[pugz]

I am so sorry for your loss, it is so terrible.

I am on Wegovy and it's truly astounding how many times someone mentions SERIOUS side effects in groups and try to downplay it and we have to remind them to talk to their doctor about it. I went on the med after a lot of research and prioritizing quality of life vs. weight loss. If my side effects were severe and interfering with my daily life I would stop taking them. I read about the gastro issues and law suits last year when it first came up.

My doctor is moving me to appts every 3 months now that I'm on the highest dosage, will need to see about regular bloodwork as I'm still on a once a year schedule for that.

[picksthemusic]

Oh no, I am so sorry to hear this, how awful.

[sent]

I'm so sorry for your loss.

[mcmel]

I’m so sorry for your loss.

[jlt19]

I’m so sorry for your loss.

[nospaekae]

Jan 29, 2024 15:37:28 GMT -5 pixy0stix said:

Re: compounding pharmacies - you don't know what you're getting with those meds since there isn't even generics of Wegovy et al drugs since they're proprietary. This is another thing that I don't think people are aware of, that pharmacies aren't compounding apples to apples.

ETA - www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/medications-containing-semaglutide-marketed-type-2-diabetes-or-weight-loss

ETA2 - a more opinion type of article on compounding pharmacies - www.science.org/content/blog-post/compounded-and-counterfeit-semaglutide

^^^ All of this. I am in the medical field (but not a physician) and one of the things we have been warning patients about are the med spas/teledocs that are popping up selling weight loss drugs. Advertizing "semaglutide" or "Glp-1 inhibitors" rather than Ozempic/Wegovy/Mounjaro is a red flag for me. Compounding pharmacies cannot use the brand names on compounded drugs. The pharma companies are not making the active ingredients available to compounding pharmacies so where are they sourcing them from? I am not anti-compounding pharmacy, but in these cases I do worry about the authenticity and safety of these drugs.

1yeartogo, I'm so so sorry for your loss and for her family.

[pixy0stix]

I am so sorry about your friend.

[ellipses84]

My heart goes out to you and your friend’s family.

Re: [mention]nospaekae [/mention]’s comment. I have a friend who recently started using and then selling some sort of similar product). I was skeptical but curious and from my brief internet research a lot are advertised as semiglutides but don’t have the active ingredient the OTC name brands have and there’s no proof that they work or don’t have dangerous side effects.

I’m always leery of stuff like this because my mom had a bad reaction to an MLM nutritional supplement system in the 90s and ended up hospitalized. She also ended a 20+ year friendship over it because her friend who was selling it refused to acknowledge the product was risky.

[neverfstop]

I'm so sorry to hear she passed away. Thank you for bringing attention to this issue.

[pumpkin]

I’m so sorry for your loss.

[Susie]

I'm so sorry to see the update.

[suzubell]

I am so sorry for your loss.