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Update:
January 28th, 2009 I had my first 3 week 20mg Sando injection.
January 29th, 2009 visit with the High Risk pregnancy team in Ottawa, Ontario to discuss reasons behind my many miscarriages. As my blood pressure is very high, they wanted me back on meds to control it. I had lots of bloodwork done and a 24hr Urine test... all results returned normal. My BP was on average 160/101. I was on Labelatol 200mg 3pills a day for a while but I had to stop taking those meds b/c of too many side effects. After several doctor visits, I am now ok with Adalat XL 60 mg once a day and 1/2 tablet of Hydrochlorothiazide at 25mg.
March 10th, 2009 IGF-1 blood test in Montreal.
March 30th, 2009 returned to Montreal for my 2nd IGF-1 blood test. During that appointment, the nurse informed me that my results from March 10th were in. My IGF-1 dropped to 305 as compared to my IGF-1 results in November 2008 which was 352. So, these results show that indeed receiving my Sando every 3weeks instead of every 4weeks is dropping my GH levels. I also feel better since I started my 3 week injections. I don't feel Acro symptoms like I did when I was getting my 4 week Sando. I would feel Acro symptoms after 2-3 weeks of receiving my injection. What I find also helps me (today) is that my BP levels are ok (129/85) but my doc still wants it to be lower.
My next visit in Montreal is May 19th, 2009. I should get my 2nd IGF-1 results on that day. I hope that it dropped even more. The normal for my age/gender is between (100-320).
Happy Spring!
7 comments:
It's great that you are feeling good effects on your three-weekly Sandostatin LAR 20mg. I'm on the same dose (but every four weeks) for these first three months until they bump me up to the 30mg dose.
The butt-injection isn't half as bad as I expected. Perhaps it's because I've become a hardened pain-in-the-butt so it's not so bad.
Your posting is very encouraging, and a great photo of Sandostatin too!
Trys
(by the way, a new support forum of wwww.pituitarychat.com has been set up, you might find it of help. It's only just been launched, but it looks very encouraging - please pass on the word)
Ooh, your box looks different than mine! Maybe because you are in Canada?
Anyway, glad things are working! That's the most important part!
Hi Ellen and Trystan,
Thanks for the update and well wishes. By the way, my picture is courtesy of Google hehe.
Yes- let's talk about that butt injection shall we. It has now been 3 years of Sando "butt" injections for me. To date, my rear-end is quite sore. I am convinced that I have developed scar tissue, actually, I have cause I FEEL IT. So, before my appointment, I pop Tylenol or Advil. I also get my loving husband to massage the area (but only when it is urgently needed of course lol). The nurses tell me that I can purchase an over the counter numbing cream (which I have not purchased yet).
I informed the nurse during my recent visit that I want them to make sure that the Sando is well mixed (but not shaken). What I mean by that is that I have some concerns that I am not getting the full benefit of the meds. Actually, to my surprise, she showed me the vial that she was holding in her hands for a good half hour prior to my appointment to make sure that it was well diluated. She began telling me that she read the instructions (more at length)that comes with the Sandostatin and took it upon herself to do this. I thanked her for being informed and concerned for my well-being. She is going to note it in my chart that this procedure be administered for all my injections. I did in the past have one nurse hit my sciatic nerve and boy was I in rough shape for a good couple of days.
Trystan- I did visit the new support forum. It looks quite promising. I tend to read more than I write.
Take care and just a little update: still not pregnant yet but trying :)
Ellen: Are you on Blood Pressure meds?
How did your physicians decide to administer the sandostatin every three weeks instead of four? I feel a change in my last week before the next injection and I would like to give them information to consider.
Hi Chandler B,
After several IGF-1 blood test that showed my Growth Hormone was still high (above my recommended levels) I explained to my doctor that I wanted a new treatment plan and ask if I could have my injections every 3 weeks. So, he did agree but wanted me to have 2 back to back IGF-1 blood test done to see what my levels would be. As a result of my 3 weeks of Sandostatin at 20mg my GH level went down. I see him on May 19th to discuss everything.
I have to drive 1 hour away to get the bloodwork done at my doctor's clinic and I did not see him. My last appointment I asked the nurse if my results were in and she is able to give me the info without the doctor being present.
Good luck and I hope your team will consider the 3weeks of Sando.
I feel lousy the week before my shot as well! I think it wears off too quickly or something. Also, it takes a day or two for me to feel better after the shot.
I don't know if I could deal with getting the shot every 3 weeks.... every 4 weeks is annoying enough. Of course, I would just because I feel so lousy. It's something I've discussed with my endo.
Thank you for posting this! I'm glad to hear your IGF-1 went down. I was considering it but my doctor at UCSF said there wasn't enough evidence to prove it would help to switch from every 4 weeks to every 3 weeks. Your experience is enough for me to want to at least TRY! I swear I wonder what doctors know anyway sometimes!!
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