Acromegaly Support Group

Hi Northwest, sorry to hear you are having problems with peg, my daughter has been on this a month 60mg once a week, the day after the injecton she feels bad with her bowels, also she has been having periods of blurry vision, just wondered if you have this, just worried because we know it can make the tumour grow again, although prof. doesnt think this is likely because of having radiation,hope you get this sorted out soon its such a worry for you, having to think of more surgery, but its also a worry when the medications dont work, I wish you well.

Hi Spiegal,

yes I have periods of my vision blurring and somavert can causes dizziness. Sometimes I have a problem with it and sometimes I don't. My endo has me doing MRI's every 6 months to check for tumor growth even though it has been radiated. Supposedly there was another study done and it doesn't influence growth, at least on a radiated tumor. We shall see, as I said mine has started to climb again and it's not fun.

Thanks for the best wishes and my best wishes for the treatment for your daughter to be successful as well. P.S. - try messing with the time of the shots to see if that helps. I found out that it's best for me to give myself the injection early in the evening around 7 or so. I found I sleep better that way.

Hi Northwest,

Thanks for reply, yes she gives herself the shots every thursday in the evening, I was worried about the blurry vision, as she has only been on this a month, and it started after the 3rd lot of meds, I wonder why some peoples levels just drop and others wont and stillkeep climbing, I see swampys are high too.and of course the radiation takes such a long time to take effect. Take care let us know how you get on.

Hi Northwest,this is the fourth week of Pegvisamont,my daughter injects in tummy and both legs60mg in all, this week she has swelling in injection site of tummy, and also has pain under her rib cage, she is having weekly liver tests, do you think it could be her liver, im so worried, her colour hasnt changed, did you experience any of this, I was so hoping it was gonna be the one.

Hi Spiegel, I do have pain on the right side but I'm thinking mine is from the added regimen of cholesterol drugs. My live has been fine so far but when I took the first cholesterol pill it was painful. I take a half a dose now but it still hurts. I'm going to bring this up to the doctor when I go in after my next blood test. I made my regular doctor let me change to the half dose after the pain and I told him I wanted the two medications to play nice together since they both affect the liver. Is your daughter on any cholesterol meds? I have no injection site problems with Somavert so far, but I have noticed that my thigh area where I inject is starting to feel like it has a hardness to it. Has your daughter had the radiation in addition to surgery?

Hi Northwest,

Yes she has had external beam radiotherapy,2 years this sept, there was a slight shrinkage after the first 3 months, but thee has been no change since, we are going next week to hospital for mri and level checks, she doesnt take statins, her cholestral so far has been good, I see you take your peg daily, she has it once a week 3xinjections 60mg in total. I was so hoping this was going to be the one, we have emailed her consultant to tell him, maybe they will change dose.I hope you can get your levels down also, is there anything else out there drug wise, pegvisamot was supposed to be Gold star, I suppose its the best for some.I also keep looking at her skin, but she has a sallow skin anyway, and its the summer, she tans easily.Today is also octreotide day, injection every 3 weeks, she seems to have some energy for a bit when she has this, Take care let us know how you are going.Theres not many peope on the forum taking pegvisamont, so its good to keep up.

Hi Friends: I am injecting 20mg of pegvisomant twice weekly (Mon & Sun). It has kept my levels normal, and so far after a year: no tumor regrowth. I am monitored every three months, and I have a yearly MRI. The only side affect I have had is a bit of shoulder pain (stiffness between the blades). I have not had any stomach problems. I had stomach problems while on sandostatin before my first surgery. Pegvisomant is the only drug that works for me. Good luck to you and yours. Keep hope in knowing that they are working on a new medication that will supposedly cure acromegaly. I don't know all of the details, but they are doing the drug trials now.
Take care, Mishxx

Hi Mish,

so glad this is working for you, and thank you so much for info on trials,this is very good news.Take care

Hi Mish, do you know the name of the new drug that they are trialling, is it paresoctrotide, or something like that, I was going to ask Prof. when I see him next week. Thanks

I'd like to know the name of the drug too. The only other drug I know about has already undergone trials in Germany and is developed by DeveloGen. I think it's called Somatoprim and is similar to Somavert. I want to know the name of the other drug as well. I had my MRI today and guess what - the tumor has grown, which is why my levels were up. I'm on Somavert and that is supposedly what could happen with this drug. It's been a very minor growth, but it's enough for them to see if possibly they will try to go in again and get more out because ALL the acro drugs just tear up my GI tract. I'm looking at a resection to remove some of my extra long colon due to severe constipation. They think the lower part isn't working, and at the same time, when I take the Somavert at the full dosage, the symptoms get worse. It's the worst it's ever been now and I'm beside myself. I don't know what to do. In addition, they now have discovered a nodule in my lung that wasn't there last time - this while there were looking for something else. Does this NEVER end in a good way for us??