I did the 2 week trial and it was a good idea to build up slowly, in my experience. I spoke to others in this group who started quickly on the long acting version, Some of them had negative symptoms, because the body did not have time to adjust. But, from what I remember from past posts, some had no problem. It seems to be individual. What is the rush? If there's no good reason to rush, it would be best to do the trial, it seems to me.

forgot to say... I thought you just had surgery?? If yes, they usually wait 3 months or more after surgery, so i didn't understand that. Just some thoughts.

Yes, I too thought that it took a few months for things to settle down after surgery. Any reason why they want to start so soon?

Somatuline Autogel (lanreotide) doesn't come in a short-acting version, so I was started on that. Before starting, though, they tested my response to somatostatin analogues by jabbing me with a short-acting octreotide, and taking bloods to see if I responded adequately.

John

Hi Suzanna

Ditto what the others have just asked, why is your endo considering starting you on Sandostatin without waiting to see if your surgery has been successful. From talking to my endo, they usually wait for 6 months before telling you the outcome after surgery. Your levels can fluctuate quite a lot in the first few months, so they wait for things to settle down.

I would seriously question your endo and ask his reasons - is he famiiar with treating Acromegaly? How many patients does he see on weekly/monthly basis?

Your surgery could still bring your levels back down to a normal level, why is your endo not waiting to see what happens in a few months time, before considering giving you Sandostatin?

Remembering your previous posts, I know that you feel quite loyal to your team, but it makes me wonder how famiiar they our condition. I would ask others here how long their endo's waited for medicating or giving them the final outcome after surgery.

Regarding stating Sandostatin of short acting before long acting, my endo put me straight on to long acting, he said it doesn't really make a huge difference and luckily I had no adverse side effects and it worked brilliantly.

Hi!

Everyone tolerates medications differently, so I would ask for short-acting version first! After 2 week trial you will know how good you tolerate Sandostatin. Like Aztreasure said, there is no good reason to rush - in both cases is the same medicine.

Good luck,
Harmony

No, I was tested on the short acting version first to see my reaction to it.

With the long-acting one, you can't get it out once it's gone in, and once it goes in then it's going to be with you for a month. That's a long time if you cannot tolerate it.

Trys
www.acromegaly.wordpress.com

Trys, that's my concern as well. I also just got my most recent IGF-1 results, and they're 1804 - my highest yet! 3 weeks after surgery! My GH went from 397 to 38, how could IGF be increasing?? I'm seriously freaking out. Maybe this is why my heart has suddenly started racing. I'm so afraid right now.

Hmm, not sure that a course of short-acting drug for a month or two would have helped me, I didn't react badly to the Somatuline until the third month really (until then, only minor reaction). I susepct it took a while before things built up in my system. However, we are all different. Many people take these long-acting drugs from the outset with little or no problem.

As for the relationship between GH and IGF-1 -- no one seems to have figured out how they relate to each other! My GH has never been that high for an acromegalic, and, post-surgery, is within range. However, my IGF-1 is not.

John

Shelley,
You say my levels could still normalize from the surgery? I've done a lot of research, but one thing I can't find is a time frame for determining the success of the surgery. Where did you get this info?

I'm also curious as to when you started to notice that the LAR was working. I just had my first shot and I'm like a kid waiting for Christmas! Although I know it's not likely to be a high enough dose for me (my initial levels were absurdly high), I'm hoping to at least notice something!

I'm not sure you'll find the answer on the web, it was my endo who told me during my consultations. The unit I attend is very familiar with Acro and treat people from all over the UK and have people referred to them from overseas. He see's patients regularly and so, the unit is very up to date with what's best practice.

He likes to wait several months after surgery, this gives the body time to adapt following the procedure and your levels to normalise themselves. It's difficult to remember exactly now, but I'm pretty sure that I had tests taken the week after surgery to give a immediate reading, then a follow up 3 months afterwards. My reading straight after surgery was within the normal reference range for my age, but the endo wanted to make sure my levels weren't being affected by any washout effect of the Sandostatin that I'd taken before. He wanted to give it a few months to ensure there was no residual drugs in my system. That way my result would give a clear indication of the success of the operation.

Maybe your endo feels that because your levels are high he doesn't want to wait any longer, as he feels that if you were going to see a drop in your IGF-1 it would have happened by now.

My levels dropped immediately after my first shot of Octreotide, unfortunately any visible effects of the drug take quite a long time for you to notice. But looking back at pictures of myself after surgery I can see a difference, especially in my face. Unfortunately the weight gain and loss of muscle tone has been one of the main disadvantages after surgery.

Hey banana,

To answer your original queston, yes. I was immediately put on to Sandostatin LAR without being on the short-acting version.

They started me on 10mg/month about 3 months after my surgery. My first IGF-1 test after my surgery was quite low and everything looked promising, but after a few months they went way back up again - even higher than before my operation.

I can understand being scared, but I'm sure everything will be okay. Your situation sounds very similar to mine, and although it's still a work I progress, I'm here and I'm doing just fine. I have my ups and downs, but I feel I'm pretty healthy, relatively speaking of course.

Hang in there!

I just re-read what I typed and should clarify.. said my first IGF-1 after my surgery was lowered a bit (but still way too high), not "quite low". My GH also was significantly down, as yours is.

I had my first injection of sandostatin( 1month) 20mg today. My surgery is on jan. 21. I was told my levels were too high and my adrenal deficiency told them my pituitary was to functioning properly.

What kind of side effects did you guys have? My stomach is mess. I get so bloated I can't fill my lungs up all the way, and I don't want to be too far from a bathroom, if you catch my meaning. I had GI issues prior to starting this, so I feel the sandostatin is exacerbating things. It's almost intollerable, but the medicine seems to have helped a bit and I don't want to have to quit.

The short leash to the bathroom problem may not last forever. I had it in the beginning.

I had an endo w/ NO acro experience prescribe my medication for it. He wanted to do the Sandostatin LAR Depot 20 mg. right off the bat & I dug my heels in & said no. The literature that comes with it contraindicates that practice. I have a tendency to have allergies & I didn't want something in me that would last a full month if I were to have a problem! He prescribed octreotide injections 3X/day for 3 months, then. That was a bit of overkill, but I actually felt better on them because I did NOT get breakthrough symptoms like I do with the monthly injection.

It seems like the short leash to the toilet syndrome is present immediately following the injection for only a few days now, but since I was put on a 30mg. dose I have the opposite problem to the point that I have a prescription to help with it.

I'm also having issues with the gall bladder & wonder if that's part of the reason I am so incredibly fatigued, but the doc from the clinical trial does not want me to have the gall bladder removed & he maintains that ANY of these drugs will cause sludge to build up in the gall bladder.

Some people have said that they have learned certain foods (& alcohol) to avoid while taking Sandostatin to help keep the tummy tamed. What needs to avoided seems to vary from one person to another.

One of my acro friends said she felt better right away after beginning Sando. I hope that happens for you, too. I hope the leash to the toilet is a thing of the past soon, but I'd be ready for it with each new injection, at least for a while.

Take care