Appetite Stimulant Megestrol

[Lety]

Does anyone used Megestrol 40 mg for appetite stimulation and what were the results. DD has lost 3 pounds in 6 months and dr wants to do gtube and put her on Megestrol. I did a little bit of research on line and I got scared reading all the side effects but I would like to hear from someone who has experience actually using it. Thanks a lot.

 

[2005CFmom]

My daughter has been on it for just over a month. This has been a tough year for her. She had her first ever hospitalization in January and was hospitalized again in October. She normally is just above the 50% mark in BMI, but fell slightly off that mark. She just had no appetite what so ever.

BTW, she is 15 and weighed slightly less than 100 pounds when we started. She now weighs about 106-108 lbs and we definitely noticed an increase in her appetite. She has not experienced any negative side effects, that we know of. She will get her glucose tolerance test in January.

We don't want her on this drug much longer, as you have noted, the side effects are scary! We will probably only have her on it for a few more weeks and then stop and see if she can maintain her weight without it.

How far off the 50% BMI is your daughter? Are you going to get the g-tube? I definitely am not a medical expert, but I would think that this drug is best used short term, just to kick start a missing appetite and to gain a few pounds that had been lost. Needing the g-tube seems to indicate that your daughters weight is much more of an issue. But like I said, I am by no means an expert in this area.

 

[bigstar]

Are there any natural appetite stimulants?

 

[Lety]

She is 7 years old. She is 0% BMI and doctor wants to do the tube as soon as possible but we want to try everything before doing it. My husband and I work full time jobs and don't have a support system to help us. I know she needs to gain weight but I'm so scared that the tube might bring other problems.

 

[RytheStunner]

Megestrol works great for me.

 

[jshet]

My son is 16 has cf and autism. He has struggled with his weight since he was 7 years old. We tried Megestrol and it did not work for him. He weighs 70 lbs and has not increased in a year. He is nowhere near the growth chart. He will be having a gj tube inserted in January. I just wanted to let you know if you decide to go with the g tube and you are having a hard time explaining it to her like we are with my son because of his special needs, I found a place called Tubie Friends. For $8 they will make a build a bear animal with the type of tube your daughter would be getting to help her understand what it will look like. I know you are not sure if you will be going this route, but I just wanted to let you know this is something you could do for her to help. The website is tubiefriends.com. Good luck Janelle

 

[2roses]

My dd was on that drug I think when she was around 10 (in addition to having a gtube). She did gain weight, but she ended up with early puberty at 11. She was tiny and when we looked into ways to help her grow, it was too late to try growth hormone etc. because she had already started her period (sorry tmi). I have no proof but I swear that drug contributed.

She is now 19 and is 4 ft 11 and will never grow taller. She looks very young and it is heartbreaking to see her not fit in with her peers. I know it will work out, but when I see megastrol, I think of my dd.

The gtube ended up benefiting her much more in the long run (but definitely screen for reflux issues before the tube). She got the gtube at 7, and she decided to remove it this past summer (at 19). Lots to think about, but please consider the tube. You will see very good results from it without the long term drug side effects. Yeah I know it's surgery but it is a staple in the cf world. When I look back at pictures of my dd at 7 and how skinny she was (and I didn't see it then) I wish we had done the tube earlier.

 

[briarrose]

Have you tried periactin for appetite stimulation? We use it on our toddler, and it's helped immensely. (Got him from the single digit height-to-weight to above the 50th in a period of less than three months.) It's an antihistamine and the only other side effects we've noticed has been that he sleeps better (otherwise, he wakes up every little bit tossing and turning, but still obviously tired) and he has stopped gagging and vomiting when he eats (apparently, it makes them feel less full, which is why it also helps them eat more.) We had to fight to get it for our son since our clinic doesn't like to give it so young, but since your daughter is older, maybe it would help as something to try first.

 

[jipleary]

Hi, I'm 24 and have CF. I've been on and off megeace for the past 2 years ish. Before I started i was 6 feet tall and about 119 pounds. Now I weigh 165. I gained about 45 pound in 2 years from the megace. I'm still in awe.

Some tips with megace that I've learned from experience.

1. You can only take for short periods at a time. (like a month on and then break from it for a few months). I actually noticed the effects find of wearing off after about a month.

2. I don't feel as though it increases my appetite as in I'm always hungry, I find it more allows me to be able to finish a lot of food in one sitting without stopping. Basically i can eat a full cheeseburger and fries while on it as opposed to forcing down a few bites of cheese burger when I'm not on it. That being said I have to still push myself to eat a lot but the megace just makes it a whole lot easier to do that.

3. The only side effect I've experienced is shortness of breath from the amount of food that I eat. Because I can get so much food in while im on the megace, I think my stomach expands and pushes on my diaphram a little when I eat. But I just deal with it cause I feel like the weight gain is totally worth it.

Let me know if you have any other questions. Here are some before and after pics. They're about 3 years apart. I'm the blond male. Those are my sisters.
Before:
View attachment 196 View attachment 197

After:
View attachment 198 View attachment 199

 

[NoelA]

My daughter has never been on it, but I work in oncology and have had many patients take it. Like most have said, short term intervals seems to be best. Most of the patients that I had did well with it and complained about being hungry ALL of the time. For some, it was not effective, but I think it was worth the try. Side-effects are super scary, but if you read up on some of the antibiotics our kids take...woah! Scared me to death! It's all about if the benefit of the med outweighs the risk of ill effects.
I'm sorry, I know this must be scary. G-tubes have come a long way and you will be surprised at how she will be able to function with it. It will likely get to the point of enzymes, treatments, and everything else. Just second nature. I had a family member watch me do a tube feed on her mother. She looked fearful and said "I can't do that. I wouldn't know what to do!" I told her that humans are interesting in what we think we can't handle and do. When we are put to the test, we usually find that we can do a lot. Our fears just get in the way. Good luck to you. I hope you find the best solution for your sweet baby.

 

[Lety]

I really appreciate all your responses. I'm going trough a very emotional period. I was finally coming to terms that she has CF and as hard as it is I was getting used to the treatments, enzymes, etc.. It was our new "normal", now the thought of something more invasive makes me really sad. I hate to see my daughter going trough pain. I know the gtube will be the best for her. She tried Periactin before and made her very irritable and sleepy. It wasn't an option anymore. Right now she is on Ranitidin 4 ml. twice a day and Megestrol 10 ml. twice a day. I don't want to keep it on Megestrol for a long time even that her doctor said that I shouldn't worry about the side effects. I don't want her to end up having other serious problems with this medication. Husband and I disagree way to often about things which makes things more stressful, He wants to give her medications just because the doctor said and he doesn't even do research on them. I like to find more information because I don't want my child to end up with something else caused by a medicine that my be helping something but messing up something else. Jipleary you look awesome. I'm glad Megestrol works for you. I guess there is a difference when you take certain medications as an adult. My daughter is 7 years old. I wouldn't like this medicine to affect her growth or something else. Jshet, thanks for the info about tubiefriends, I had no idea about them. Thank God for this website. Hope you all are having a good weekend. Lety, Alexa's mom 7 years old DD508

 

[Lety]

I really appreciate all your responses. I'm going trough a very emotional period. I was finally coming to terms that she has CF and as hard as it is I was getting used to the treatments, enzymes, etc.. It was our new "normal", now the thought of something more invasive makes me really sad. I hate to see my daughter going trough pain. I know the gtube wilb be the best for her. She tried Periactin before and made her very irritable and sleepy. It wasn't an option anymore. Right now she is on Ranitidin 4 ml. twice a day and Megestrol 10 ml. twice a day. I don't want to keep it on Megestrol for a long time even that her doctor said that I shouldn't worry about the side effects. I don't want her to end up having other serious problems with this medication. Husband and I disagree way to often about things. He wants to give her medications just because the doctor said and he doesn't even do research on them. I like to find more information because I don't want my child to end up with something else caused by a medicine that my be helping something but messing up something else. Jipleary you look awesome. I'm glad Megestrol works for you. I guess there is a difference when you take certain medication as an adult. My daughter is 7 years old. I wouldn't like this medicine to affect her growth or something else. Jshet, thanks for the info about tubiefriends, I had no idea about them. Thank God for this website. Hope you all are having a good weekend. Lety, Alexa's mom 7 years old DD508

 

[briarrose]

Lety -- With us, periactin started that way, too. He slept all day and was pretty crabby. It was a pain getting him onto the periactin, but we were able to counter the side effects this way:

What we did was start with a very small dose. So, originally he was prescribed 5mL once a day. That lasted for one dose. But, we had fought for this drug, wanted it to work, so we experimented a little bit. We first split the dose in half, so the goal was to get him 1/2 a dose in the morning and the other 1/2 dose at the end of the day. Then, we started with 1mL in the morning only. (Just one, very little dose once a day.) After 2-3 days of that, we went to 1mL twice a day. Then, I think we went up by 1/2 mL once a day, adding every few days, but we might have gone even slower than that (1/4 mL increase once a day every few days.) It took us a couple of months to work our way up to the full 2.5mL twice a day dose. (And, once he got to the twice a day dose even at the small end, after a day or two of extra sleepiness, he would eat more easily and gained a lot.) On periactin, there was one month alone he increased his weight by over 10% of his body. (Gained 2.5 pounds in less than 30 days, and we've kept it on.)

Worth a shot, maybe, during your off time from Megestrol or if it doesn't work for your daughter.

Good luck!

Erin