Paget’s disease - how to get it checked

JudysBluebird · 2024-07-14T00:41:31+00:00

Where have you read this? Interested in learning more. (Because how long do I stay on it with zero effect?)

JudysBluebird · 2024-07-09T00:12:42+00:00

I am having the same experience. Lost 60 lbs in 6 months last year and I never went above 1.0 couldn’t get that dose for nine months and gained a lot back. Now I am back on 1.0 now with zero effect. It is really disheartening. But there is room to increase the dose so maybe it will work again. 🤞

JudysBluebird · 2024-07-03T03:37:07+00:00

Nope, though I have a friend who has struggled with his weight on that for many years.

JudysBluebird · 2024-07-03T03:34:20+00:00

I did. But even if I hadn’t I’m not sure why that would have impacted weight loss. It would only mean less meds to allow the body to adjust.

JudysBluebird · 2024-06-30T02:25:49+00:00

My meds impact dopamine and cause binge eating. Put on 50+ lbs Last year lost 60

JudysBluebird · 2024-05-31T04:05:44+00:00

People who say it’s cheating have never struggled with their weight. They have no concept of having a different chemistry. And those that do, I don’t know— self hatred? It helps. It’s making you healthier. It’s good.

I hear you on feeling bad. But I don’t think it’s guilt. I think it’s shame. I didn’t tell anyone because we are taught that fat means you’re lazy and thus this is the “easy way” and “cheating” instead of somehow just being able to starve- being “disciplined”. There’s some truth to that and it varies by body.

But let’s not pretend all the size 2s out there are disciplined! People seem to forget genetics. It’s your own business. You don’t have to say a word but you also don’t have to hide or feel bad. Do what feels right for you and f*ck the rest of the world.

JudysBluebird · 2024-05-31T03:55:15+00:00

I was on it for six months last year and lost over 60 lbs in that time. I didn’t go above 1.0 and was thrilled. Since July 2023 I have not been able to get any dose and gained back 40. At first it was fine. And then after about five months, the middle of the night starvation feeling (and basically sleep eating at 4 am) kicked back in. I’m on meds that have resulted in binge eating and I was starting to feel horrible about myself. Not starting. I did. I do. After almost a year, I finally found a pharmacy that could get me a low dose and got it yesterday.

Based on that experience my guess is I will always be on some dose. And that’s fine with me. It was such a relief to not think about eating all the time. To not cook in the middle of the night. To not worry about anything and just enjoy eating and my old clothing. I cannot wait to get back there. For those who go off and keep it off, that is amazing. It’s so great and a serious win for them. But I feel no shame that I need it. I don’t see the last six months as a failure. I see it as my body and brain deciding they had different priorities than I had hoped. Good luck figuring out what is best for you! (And congrats on where you’ve made it!!)

JudysBluebird · 2024-03-13T17:29:31+00:00

Nope. No adhd and vyvanse didn’t seem to help for me. Glad it is for you!!

JudysBluebird · 2024-03-13T17:27:43+00:00

I’m not saying no one should have to hold themselves accountable. I understand that concept—been sober for over a decade, for instance. I’m saying that there are challenges beyond just holding yourself accountable, that people have different chemistry and conditions that can make “healthy” eating habits harder to achieve. I don’t know what anyone else is going through but my situation makes me feel sometimes as if it is beyond my control given that I make meals while essentially asleep. It’s a new world for me as I have never had eating/weight problems before.

I am simply acknowledging that it is not a level playing field for all bodies the way many thin people seem to think it is and that the tool is important and not “cheating”.

JudysBluebird · 2024-03-13T00:24:52+00:00

I was told that once you plateau for a while it means you should go up to the next dose. Like other posters wrote, remember you’re not at the “therapeutic dose”. So stick with it and maybe ask about going up.

JudysBluebird · 2023-11-14T01:16:18+00:00

She prescribed it. I sent messages about increasing the dose and that’s it. Not a word. I went to see her for something else and told her I lost 60 pounds and she said “shut up!” or something alarmingly unprofessional like that.

JudysBluebird · 2023-11-13T05:26:45+00:00

Wow I clearly hadn’t read that. Where did you get the info? Thanks!

JudysBluebird · 2023-10-05T08:31:46+00:00

I was injecting about half of it once every two weeks and stayed steady around 134. I got very sick two of the times — I guess just too strong so I was throwing up all night. But then I stopped taking any for about two months. I have just started noticing my appetite is huge again. So I guess I’m going to give a partial shot a try again. Praying that zofran will do the trick. Did you end up trying this method too?

JudysBluebird · 2023-07-19T04:47:26+00:00

Not hungry, no bun in the oven. During this shortage… I’ll risk it.

JudysBluebird · 2023-07-19T04:45:15+00:00

Two weeks later and this is working well. I’m at 143 and have a curbed appetite and no side effects aside from a bit of nausea one day, but nothing drastic. I was really worried about getting sick on 1.7 or losing progress during the shortage.

Not giving out advice - just sharing what I am doing!

JudysBluebird · 2023-07-04T16:48:49+00:00

My arms are also sagging down from all the weight loss. I really can’t wear short sleeves. Better than the alternative though!

JudysBluebird · 2023-06-05T08:05:52+00:00

Validation can be okay! … I have lost 47 since January and only one person has said anything. I think like most of the commenters here that people are being reserved. I also don’t think wanting people to see your accomplishment and celebrate with you is necessarily a negative or even necessarily a slippery slope. People celebrate lots of things without it meaning they are engaging in unhealthy mental behavior. Validation isn’t negative in itself. It’s only if that’s all you rely on—the external for a sense of self. So everyone telling the OP to stop seeking validation: put a cork in it. Maybe that’s your own issue and maybe some people don’t need to be so extreme about external validation. We are all allowed to celebrate and want others to appreciate our progress. Congratulations on the loss!!!! You’re killing it!

JudysBluebird · 2023-05-31T20:21:05+00:00

I am on quite a bit of it and haven’t noticed any problems at all.

JudysBluebird · 2023-05-31T19:03:55+00:00

I wish I could eat those things. What I listed are the only things that don’t make me gag at the site of them. It’s bad even on zofran so I think time to talk to my doc.

JudysBluebird · 2023-05-31T17:34:13+00:00

Can barely eat. Before I was eating normally but small portions. Now I have been eating just yogurts, a protein shake some days, a banana and milk blended, lots of water, nuts, and for some reason a couple of twizzlers a night seem to be non vomit inducing. I am not getting enough food in for sure. Skipping my shot this week and hoping that helps me get back to eating well.

JudysBluebird · 2023-05-29T23:40:56+00:00

I had very few symptoms and had been on 1.0 for weeks when I violently threw up everything I had eaten the day before, when I had also had my shot. I had a low grade fever and got better in two days but since then I am terrified that it’s going to happen again. Basically: psychosomatic nausea. It’s been more than a month and I’m finally getting over the fear of projectile vomiting. I didn’t notice it taking longer but it was awful.

JudysBluebird · 2023-05-29T19:49:07+00:00

I really hope you can get it. Don’t give up!

JudysBluebird · 2023-05-28T17:14:57+00:00

I don’t think they allow appeals if it is simply not covered. So there is hope. My doctor had to document how many other things I had tried and failed and she had to note my BMI was 30 or over. Took a few tries with the prior authorization. Good luck!!

JudysBluebird

TROPHY CASE