Hi,
let me share the best thing I can with you, And it came from a few Doctors my indo' nurse and my professor!!!! ALL MEDIATIONS WILL HAVE LISTS!! OF POSSIBLE SIDE EFFECTS AND NO ONE PROMOSES THAT YOU WILL EXPIRIENCE ONE OR ANOTHER OR ANY AT ALL, ALSO TO WHAT EXTEND.
My own expirience with the Octotide was in general great!!! BUT after I finished [ 3 injections over 3 months] I fainted twice in 2 months indoors and outdoors ending in hospital with a plaster. we are almost sure that it ispartly to do with a side effect from the injection, BUT my side effecte from the Acro are the same and can creat a fainting effect too!!! THERE FOR!!!!!!!!!!!!! go with your own feelings!! and remember if you take the medication just ask to be monitored more frequently so that you can stop it at any time.
the other thing to remember is: It takes 6 monts or so for the body to cleans itself from the mediacations side effects.

I wish you the best!!!!
orit
P.S. ''what we think is what we create'' so think befor you think and make a good choice''

Hi Kvb and Orit!

Orit that was really interesting - I have fainted twice in just first 6 days on Sandostatin. I thought that it was just my problem.

And Kvb I don't know what to say. I don't want to discourage you. Everyone tolerate medications differently. I generally don't tolerate medications for acromegaly well, so I had on Pegvisomant almost all possible side effects. Some of them almost daily, some often and some of them now and then. Mainly patients tolerate Somavert much better than other medications!
Side effects for me were not so severe when I was on Pegvisomant 10mg. From your post I assume that you will also start with the lowest dose. The good thing is that you will give yourself injections daily and therefore you can stop any time.
If I summarize all my experiences with 3 medications that I have used, than was Pegvisomant the most effective and most sustainable.

Happy Mother's Day!
Harmony

Hi K,
Responding to your Somavert question. The other girls summed it up very well. My endo didn't feel that my symptoms or IGF-1 levels were bad enough to warrant going on any med. My high was 291. He is aware of the side effects. I would say if your symptoms are that unbareable and you have exhausted other choices, you might want to give Somavert a try. My side effects were, after the 1st 3 days I got flu-like symptoms that lasted a week then the second week I got gastrointestinal problems that lasted a week.I was on 10 mg every other day. I called my doctor and said I was stopping. That's when I looked into Gamma Knife and had that done almost two months ago. Along with the Gamma Knife I have started taking Curcumin like Harmony has been, just over one week ago, 8 grams a day. I have cleared this with my endo and no ill effects of this, I've been sleeping a little better. We all have our own journey with this, good luck, keep up posted.
R Hanna

Hi K

Everyone reacts differently and the only sure fire way to know is to try it. Having read through the list of side effects and reading previous posts, I was also hesitant about having the injections, but luckily I didn't have any side effects until my 4th injection. I didn't get any stomach problems or suffered with any fainting. One thing I did notice was feeling exhausted and worn out for a few days after the 1st injection. After that my body must have adapted to the drop in IGF-1 levels. I only stopped the injections when my hair started falling out.

The good thing with the injections, is that you notice the effects pretty quickly and the soft tissue swelling does reduce.

Good luck with making your choice.

Hi My daughter is injecting 60mg once a week of pegvisamont, levels are now normal, they were after 6 weeks, she was on octreotide and lanreotide for 3 yrs and they didnt b udge much, although lots of her symptoms did disappear.Hope this helps, she doesnt have much sleep, but was like this on all of the medications.

I was on sandostatin LAR about a year, increasing doses, and had m
tolerated it very well. I did have significant hair loss but it stopped after about 4 months and was not intolerable. I suspect it was due really to reduction in GH. However, when my hormone levels didn't fall far enough my Endo switched me to Somavert 10mg. I have been on that now about 6 weeks. I don't know about my IGF1 orGH levels as they haven't been checked, but I have had continued improvement in my facial features, hands and feet. I do have hot flashes and it seems I'm developing some belly fat that wasn't there before but both of those could be related to my "age and stage". Also my blood pressure seems to run higher. The Somavert and I get along just fine in every other respect though daily injections ate an inconvenience.

Hi Granin, my daughter injects 20mg x 3 once a week, has done since she started, Prof. seems to think this is a better way to do it. and of course its only once a week. glad you are also having good results, my daughter also has the flushing, and sleep is not that good.

Hi Granin!

Do you inject Somavert in your tummy? Somavert causes Lipohypertrophy - accumulation of extra fat at the site of many subcutaneous injections. Good news is that will gradually disappear over months if injections in the area are avoided. I gave myself injections in legs, arms, tummy and buttocks and I got Lipohypertrophy on all these places. When I was cca. 3 months off everything has changed back to normal.

Harmony

Hi KV,

From my experience Somavert has been fine and I have had very little side effects. I had worse side effects when I was on Sandostatin. With Somavert, I occasionally experience slight pain on my right shoulder. Every once in a while I get a neck ache too. Besides that, no GI problems or anything. I consider myself lucky and thank my blessings. My IGF is completely normal which is the best news. Everyone's body reacts differently. Take care and good luck! Mishxx P.S. I inject 20mg 2x/wk.

Hi!

I am back on Somavert 10mg. First days were very rough for me, but now I feel fine. My only problem is severe muscle pain in legs.

I take daily magnesium and it's helpful to some extent, but pain is still here. Has anyone had same problem?

Harmony22

I've been on pegvisomant 10mg/day for 3 months now, and my IGF-1 levels were tested last month at 711. Higher than at any time since before surgery so I imagine at my endo visit next week I'll go up in dosage. I too have somewhat achy legs, feel like I need to stretch or massage my legs a little, maybe arms, too. But I have no other side effects than that. However, with the IGF-1 so high, it could also be the activity of the acro. Also, I think the "belly" I referred to earlier may not be just fat. My potassium was upped to 80meq/day and I also take magnesium. I quit injecting in my abdomen.

Hi My daughter does it in the top of her leg, she also gets achy neck, and facial pains, but this is due to ATN

I have been on Somavert for about 2 years now. The biggest problem that I have is not sleeping. I still have hot flashes when I eat too many carbs, but I can pretty well manage that. It's just the sleeping thing that I'm still having problems with.

Hi, my daughter has been on Pegvisamont since January 2010, levels normal, but there was a mention of keeping an eye on Hypoglycemia today,does anybody else have this. does anyone know if the Gi diet is good for this problem.Thanks