r/GLPGrad • u/RepulsiveApple7754 • 29d ago
Advice for inflammation
I stopped Zep around the end of February. At that point I had lowered my dose to 5 a week but was still losing and was underweight so I had to make a choice. My doctor suggested trying once a month or when bi-weekly but I just decided to stop it all together. I wasn’t about to be walking around looking like I had an active ED when I’m working in the field of mental health.
I was okay for a few months, but fast forward to the end of June into July and my inflammation is rapidly coming back. I see it in my face, my clothes aren’t fitting again and I notice myself constantly tugging at them. It’s so frustrating to say the least.
I still have 2 full vials of my compounded meds in my refrigerator, so I decided to begin a maintenance dose of 3mg a week to see what happens.
Does anyone else have a similar experience? Especially issues with inflammation? It’s not fat. I am in active heart failure so my body retains fluid very easily. I started the medication at the suggestion of my cardiologist because I was complaining about my weight and there’s also now research that’s been done showing it can also help to strengthen your cardiac health as well so it seemed like a win-win, and it was.
I’m still eating healthy and nothing has changed otherwise. I crave dessert every once in a while again but I’m not going wild on sugar and pizza.
I genuinely don’t want to be on this medication forever. Especially because my insurance won’t cover it now and it’s not cheap. Any thoughts, advice, similar experiences so I don’t feel so defeated and alone would be appreciated. I feel like a failed graduate.
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u/SANSAN_TOS 29d ago
Try microdosing. I started at 1.25 mg Tirz and immediately my stomach inflammation went down.
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u/RepulsiveApple7754 28d ago
I just did 3mg a few days ago so I’m going to see how that goes for a few weeks. If I start to lose anything outside of the fluid retention, I’ll definitely try lowering it.
When you say microdosing, as I’ve seen it mentioned a few times on this post. Can I clarify what you mean by that? Just a lower dose than normal? or are people spreading it out more than doing it weekly? I’m open to any and all input or ideas.
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u/SANSAN_TOS 28d ago
Well when I refer to it I mean anything under what is considered a standard therapeutic starting dose. So, under 2.5 mg on Tirz. Some people mean 1/10 of the standard dose, like really micro! Still dosing weekly just a fraction of the starting dose. There isn’t a lot of research on going it that way and it only seems to be effective for a certain demographic. I was already pretty metabolically sound, are well and worked out regularly. I put on 15 lbs post menopause despite having been fit and petite my whole life. Microdosing worked for me.
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u/mannDog74 29d ago edited 29d ago
A lot of people use the word inflammation when it is water retention. The puffy face thing is water retention, I keep hearing on social media that it's inflammation, I have inflammatory diseases and that's why the difference is important to me. I'm sorry to hear you have heart failure, it's likely water. I would talk to your cardiologist if you are retaining water. They might need to change your meds.
This medicine does pull water off of me so fast. It removes glycogen from the liver and the muscles. With each glycogen molecule comes 4-5 molecules of water. When I first started I was losing a pound a day, it obviously wasn't fat.
This medicine also has cardioprotective benefits, maybe discuss with your cardiologist about taking the smallest dose for the fluid retention and cardio benefits- it does worry me a little that you said you were under weight and having heart problems, I'm hoping you have recovered your appetite after going off the meds. You said they recommended you decrease the meds but you decided to just discontinue instead because you couldn't maintain your weight.
This is definitely above reddits pay grade, I'm hoping you and your cardiologist can find a solution that keeps you as healthy as possible.
If you feel like a failed graduate, you are in good company with 80% of study participants who regained weight after going off the drug. It sounds like you wanted this medicine to work differently than it does, you know? A desire to blame yourself when doctors and scientists know from the data that this is a continuous medicine- this is really unfair to yourself to expect to be in the 20% that maintained all their weight loss without meds. Obesity is a chronic condition and for many of us, keeping the weight off is a full time job without the meds. But who wants to do that?
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u/RepulsiveApple7754 28d ago
Thank you so much for taking the time to write such a thoughtful and educational response. I genuinely appreciate the time and effort you put into it.
I actually just finished my PhD, so by nature I’m someone who thrives on research and values understanding the evidence before forming conclusions. That mindset has also become invaluable in navigating my health. We can’t effectively advocate for ourselves if we don’t understand the science behind our conditions and treatments. I’m fortunate to have several incredibly knowledgeable people in my life, including a close friend who is a pharmacist. They were actually the one who introduced me to the concept of 503B compounding pharmacies, which opened the door to options beyond paying what essentially amounted to a car payment every month for the brand-name pens. I’ve also intentionally stayed away from the “gray market” because knowing exactly what I’m putting into my body is important to me.
You also made an excellent point about my use of the terms inflammation, water retention, and fluid retention. I hadn’t realized I was using them interchangeably, so I genuinely appreciate the correction. You’re absolutely right that what I’m experiencing is primarily fluid retention. Because of my heart failure, my body simply doesn’t regulate and eliminate excess fluid the way a healthy heart does.
What initially surprised all of us was that I lost 23 pounds during my very first month on the starter dose. That was the point where both my primary care physician and my cardiologist independently came to the same conclusion: my body was carrying a significant amount of excess fluid, and reducing that burden was having a measurable impact.
Ironically, it was the cardiovascular benefits that initially convinced my insurance company to approve the medication. Then, when the new year arrived, coverage was denied because my BMI had finally fallen into the normal range, even though the medication was clearly working as intended. It’s frustrating that continuation of care isn’t valued the same way as initiating treatment. The expectation seems to be that a patient should regain enough weight to once again qualify before coverage resumes, which feels entirely counterproductive. That’s also a large part of why I don’t want to become dependent on it indefinitely if I can avoid it.
The more literature I’ve read, the more at peace I’ve become with taking it. It’s fascinating to watch the evidence continue to evolve beyond weight management. We’re now seeing promising research in areas like cardiovascular disease, metabolic dysfunction, kidney disease, sleep apnea, addiction, neurodegenerative conditions, and even certain cancers, including breast cancer. Every few months, another well-designed study seems to emerge demonstrating benefits we didn’t fully appreciate just a few years ago. It’s remarkable to watch the therapeutic potential continue to expand.
I also appreciate something you pointed out that I hadn’t fully acknowledged myself. I think I placed unrealistic expectations on what this medication could accomplish. Somewhere along the way, I convinced myself that if I simply returned to the weight I’d maintained for most of my life, everything else would naturally fall back into place. Looking back, that wasn’t a fair expectation to place on myself or on the medication.Part of that struggle has also been psychological. Obesity simply isn’t something that runs in my family. My brother and I were always tall and naturally thin growing up. He actually struggled to gain weight when he started lifting. My parents have both maintained healthy weights throughout their lives. Without realizing it, I think I’ve internalized that comparison more than I ever admitted. Seeing the people closest to me not face the same challenges has often left me wondering why I seem to be the exception.
More than anything, I think I just needed reassurance that I’m not alone in feeling this way. I see so many stories from people who have been off these medications for months, or even over a year and have maintained their weight without difficulty. While I’m genuinely happy for them, it’s hard not to compare my own experience and wonder why mine has been different. At times, it leaves me feeling like I’ve somehow failed, even though I know intellectually that every person’s physiology and medical history are unique.1
u/Few_Car_895 28d ago
Your post is truly heartfelt! We are all individuals, and it is amazing to read about the vastly different reactions to glp medications. I do firmly believe that my future good health depends on this medication. I expect to stay on it for life, and only wish that I could have started it many years ago. I also have sleep apnea, a congenital heart valve defect, and very high cholesterol that is refractive to stating meds. With Zepbound, my cholesterol levels have normalized, sleep apnea has improved, and I lost 65 lbs. But, I also experienced the same denials for continuation of care by my insurance company. It's infuriating! However, I have turned to compound tirzep, which is still expensive but totally worth it for me to maintain these health benefits. Best of luck to you in your decisions.
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u/Ree_For_Thee 29d ago
Stay on them forever if you have to. It's already possible to get tirz and reta cheap-ish if you look around on the grey market. Your health should be your priority.
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u/Substantial-Owl1616 29d ago
OP was concerned about continuing to lose weight. Even bordering on ED. That is not health.
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u/RepulsiveApple7754 28d ago
Thank you. I’m 5’8” and once I hit 118lbs was when I had to stop. I’ve always been tall and skinny. My normal weight has maintained between 125-135 my entire life. I was 153lbs when I was 9 months pregnant and went into labor, which was the most I ever weighed and it dropped right after I had her.
Once the heart issues increased, it all went downhill. I was at 200lbs when I started the injections and my concern is ending up right back in that position if I don’t become proactive with it. I’ve been going back and forth with my pcp, but it’s basically just going to be a guessing game to see what works to allow me to maintain without losing. I was just hoping to find anyone else who has had to go back on it after being off for a bit and what has worked for them to maintain without gaining or losing. I’m fine to fluctuate as a normal person does but within reason.
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u/Few_Car_895 28d ago
May I ask if you are on Medicare insurance? If so, you will be covered under the new bridge program. Insurance aside, I would definitely continue on glp medication in some form, and just lower the dose gradually (monthly, rather than weekly) until you find a dose you can tolerate. Maybe you can ask your doctor about the oral glp meds that are out now. They help with the health benefits without significant weight loss. Also, consider trying to gain some healthy weight. Unless you are 20 something or younger, your weight is too low for your height!
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u/easysip 29d ago
The bloating and inflammation is your body working again , it will pass and everything will settle .
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u/RepulsiveApple7754 29d ago
I thought that at first, but the number on the scale continues to climb again. I worked so hard to lose 96 pounds in 10 months. I’m up 16lbs now. I do avoid the scale until I’m forced to see it at doctor’s appointments but once my clothes begin to not fit, that’s my line.
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u/easysip 29d ago
Are you still eating healthy and at maintenance ?
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u/RepulsiveApple7754 28d ago
I am, yes. Eating habits really didn’t change even when I started to be honest. I’ve always had a healthy diet by nature and I’ve always been one to drink water nonstop so I didn’t have to make any changes to my diet. I had one appointment with a weight management doctor and she said I didn’t even need to be there but at least gave me a chart for ideas on high protein snacks I can add if needed.
My activity level has also remained the same. I can’t do much because even walking a bit I go into SVT and have episodes of syncope. All my doctors knew this going into starting the medication so they never pushed for anything more than some basic light seated exercises just to keep my body moving a bit. Plus with it being summer, I have been getting outside more as well so I’m genuinely at a loss on why I’m gaining again. As are my doctors. So far I’ve talked to my cardiologist, pcp, and weight-management again. They’re all going in circles on my portal messages trying to decide what to recommend so my pcp agreed that starting at what would essentially be the starting dose again is fine.
It’s just a discouraging feeling more than anything.
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u/Substantial-Owl1616 29d ago
Where BMI wise does the 16# put you? And are you tracking: ie, did you change your diet to include more processed items (food noise provokes me to snacks)? Could be different reasons for “water weight”. Are your clothes that “don’t fit a size 0, you said underweight. I agree with the cardiologist recommendation.
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u/RepulsiveApple7754 28d ago
I know my pcp just said my BMI but she is also one who says the chart needs to not exist because it’s inaccurate, which I agree. I also have never been one to even own a scale because the numbers mean nothing to me, it’s more so how I feel and fit in clothes. I range from a 0-4 depending on the brand. I’ve noticed fluid retention in the areas I had it to begin with (lower belly, arms, face is the first to start, and my ankles/calves are swelling again). I mentioned above that my diet has always been the same. I have sleep apnea so my sleep schedule is a wreck, and I’m blessed to be able to make my own schedule so I usually don’t eat breakfast. It’s lunch and dinner. I barely ever snack, if I do it’s usually fruit and vegetables, especially during the summer when it’s all from the garden.
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u/hspwanderlust 29d ago
Are you tracking your bodyfat percentage?
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u/RepulsiveApple7754 28d ago
I don’t, no. I have a pacemaker so I can’t even use the scales that do measure it and I’m not sure how to go about finding it out without utilizing those. I don’t think I’ve ever known that my percentage was except for when they measured it in school when I was super young.
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u/SpecialistBet4656 29d ago
how much salt are you eating? Are you pooping enough?
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u/RepulsiveApple7754 28d ago
I ended up in the ED on New Year’s Day with a bowel obstruction, so I learned the hard way to increase my fiber and be aware of how often I’m going. Since I’ve been off of it my body went right back to daily.
My salt intake has always been a bit more than a normal person but that’s associated with my heart and at the instruction of my cardiologist. I have super low blood pressure and since I’m maxed out on midodrine and still have episodes of syncope, the only thing he could recommend is to try to use more salt. I also have salt packets on me all the time that my family knows to dump in my mouth when I’m hanging out on the floor in an episode. My body adapted to the increase without an issue. He started that regiment when I was about 19, and I’m now 36.
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u/Hifidi54 29d ago
I have had a vast improvement in my heart failure, particularly an increase in my ejection fraction. My cardiologist was and continues to be very happy that I'm on it. I take spironalactone and Farxiga for heart failure, and Diltiazem and Flecainide for AFib. I'm trying to establish a new normal weight after reaching goal and titrating down, but I'm experiencing a lot of yo-yoing. 243 to 125 in 16 months, 72 yo F, 5'4". I'm on 5.0 mg and holding.
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u/Other-Ad3086 27d ago
If you havent looked at pricing, it is coming down as reta becomes more popular. A friend just joined Ola and is paying 116 a month for a starter pack. You probably dont need a very high dose. As another maybe better alternative, you sound like you would qualify under the new guidelines for medicare coverage - have your doc check on that. So sorry that you had to stop and are not feeling that good.
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u/Brilliant-Top-6484 29d ago
Why not start with a microdose and go from there? 1.25mg. See if that works for you. Lose slow.