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A warm welcome to my Blog and my hope is that you find comfort in knowing you are not alone with your Acromegaly.

Wednesday, January 14, 2009

2008- Updates

Another Christmas has gone by. What a year it has been. My son will be 6 in September and my husband and I are amazed at how time flies. Now, back to my Acromegaly. Overall, I have been feeling better but I am still experiencing episodes were I swell and feel terrible. I have been monitoring the weeks when I do not feel great and it always ends up the week and sometimes two weeks before I am due for my Sandostatin injection. I have been sharing my concerns with my medical team and finally after my IGF-1 test was taken in November 2008 the results show that my GH levels are slightly high (352). Instead of receiving my Sando injection (20mg) every 4 weeks, I will start receiving them every 3 weeks at the same dose to see if there is a decrease in my GH levels. My new treatment plan should commence end of January 2009. I can't wait!!!

6 comments:

Alecia E. said...

What a grerat photo of you and your family! Hope your new treatment plan helps and you get better results!

Julie S. said...

Hi Alecia,

Thanks for the message. Yes, I really do like our photo. I can honestly say that I am less camera shy these days.
I did receive my 3 week injection on Wednesday January 28th. I really can't feel a difference [yet] but my buttock is really tender/sore as it has been over 2 years since I've been receiving my injections. I'm gonna have to setup massage appointment for sure.
I had my first visit with the High Risk OBGYN specialist on Thursday January 29th. We are trying to understand the reasons behind all my miscarriages? Well, during my visit, I was told that I had to return taking my blood pressure medication as my levels were very high. My BP levels are never in the normal range and I explained that I stopped taking my BP meds [as directed by my Dr. in Cornwall] if I am[was]pregnant. So, I never started up again. Now I am experiencing other symptoms and will share these during my next visit in Ottawa at the end of February 2009. I feel aweful!
During my visit, I also had a battery of blood work done and am in the process of a 24 hour urine collection [lots of fun ;)]
Take care

polarchip said...

Hi Julie!

So great to have found your blog! I have acromegaly too and right now I'm also taking Sandostatin. I'm so glad you mentioned the point about the last week before getting your next shot- I had the same issues and I wasn't sure if I was imagining them or not! I really felt like I could tell when I was due for my shot. (I also switched to every 3 weeks for a while.)

Anyway, please email me if you would like to join acromegalybloggers as an author! I'm writing a little announcement about your blog right now.

Take Care and best wishes for health and happiness in 2009!!

Julie S. said...

Hi Polarchip,

I searched your blog for your name. Please forgive me as I can't find it.
It is truly great to read others journey with Acromegaly. To respond to your comment about feeling symptoms a week or two prior to my Sandostatin, yes, I too thought I was going mad but my husband would also notice swelling in my face and see how aweful I felt. Well, as I wrote to Alecia, I have not been feeling the greatest lately but that just seems to be the norm for me. Boy, I truly am getting sick and tired of visiting Doctor's offices!!!
Thanks for your support it truly helps me.
Best of health for you as well.

Starbucks Addict said...

I agree, you're looking fantastic after surgery. I've also noticed my symptoms returning 2-3 weeks after my Sando shot.

Julie S. said...

Hi Jenny,

Thanks for your message. I'm going on 2 months now of receiving my Sando every 3 weeks. At first I did not feel any different. I was very unwell as my blood pressure was extremly high so I could not tell if my 3 week treatment was helping any. Well, now that my BP is somewhat undercontrol, I do not feel any symptoms returning after my 2 weeks of receiving my Sando. I did get my IGF-1 results back last week and it went down from 360 to 305 so my 3 week treatment at 20mg is working. I see my Endo May 19th. I too need to update my blog which I want to do this weekend. Take care, Julie