biggest hugs one thing I love to hear is someone is kicking the ass out of this conditon LOL way to go..he may feel well many do after an operation lovely member on here was talking to me and they had only just come round from surgery..but my advice is make him rest and to both of you the biggest hugs ever..no chasing you round the bedroom OK LOLOLOLOLOL

Ditto JJ.
Not insensitive. Good news gives hope. long may it continue

Congratulations ! So nice to hear good news.
Wish you to have now one and only one problem in life : to find a new nickname on this forum. No more Aworriedwife.
Arelievedwife ?

Way to go for the good news! That gives us all hope, well done!

My OGTT Testing GH was between 2-3

My IGF 1 Post Surgery in Mar 11 was 420.
My IGF 1 (Jul 11) is now 931.

Dr. Ezzat at Toronto General placed me on Sandostatin LAR 30 MG.

I had no idea this drug was SO EXPENSIVE! I have to take it once every month. My Drug Coverage is spotty due to me being on sick leave from work, so I am not sure if my Blue Cross will cover the $2500 a shot treatment.

If anyone from Ontario here know of any catastrophic coverage, or provincial health plans that may cover this drug as I currently am at home with the support of my parents and have no income. I have applied for my Long Term Disability with my Government Job, and I may or may not get my Drug Coverage Instilled until April 2012 due to new bargaining agreement.

Thus... I am stuck high and dry with this outrageous drug costs.

Sandostatin LAR made by Novartis Pharm in Canada has an ACESS Program. Has anyone used this Reimbursement Program?

Thanks for the kind words and support everyone.

Wesley, I thought that Canada had free healthcare. What an overwhelming burden to worry about paying for your medication on top of everything else. $2,500 a shot, WOW. Sorry to hear that your levels are rising. I know that's a possibility, but hoping for the best. The GH levels we have are from normal blood draw, not OGTT. It's definately a wait and see game with this disease.

Yes, OHIP does not cover the Sandostatin Lars shots. My only saving grace was that I was over 65 when formally diagnosed & required the monthly shots!! Sometimes being a "Senior" has its benefits!

My shots were $1760.00 last year which I would have had to pay for as I have no extra medical
coverage at all. Was on 20 mg.

My Endocrinologist is also Dr Ezzat, surgeon Dr Zadeh.

Don't expect any help from your Provincial Representative. I tried to get help in funding the GHRH testing which is only done by the Mayo Clinic in USA, no where in Canada, but Ontario Ministry of Health doesn't recognize the Mayo Clinic. But guess it's worth a try getting in touch with them to see what advice they could give you. After all, it is an election year!

Hi JJ - Medicare in Canada only covers hospital bills and certain proceedures under provincial healthcare plans. Things like prescription drugs, dental and vision is not covered unless you have private insurance or are on welfare or under other government coverage plans. It is by no means a perfect system.

Anyone who says Healthcare is free in Canada is dellusional, we pay for it through many taxes.

VicMarg - You were diagnosed when you were 65? How did you get through without a diagnosis?

I have seen Dr. Ezzat, he is very good. He is very busy and right to the point, put me on Sandostatin right away. I may yet have to go through Dr. Zadeh for another surgeory, yay!

On the bright side, there is a provincial drug coverage plan called Trillium. It's prescription coverage based on income and calculated deductables. I am very relieved, just enrolled into it today. Sandostatin is covered by this program.

I assume this also covers all of us who are turned down by private insurance companies who are identified as too costly. Yes, you can be turned down for existing conditions in Canada!

Hi Wesley,
Lots of stuff going on since at least early 1990's but put down to "change of life", aging, hereditary, etc. One doctor in Oshawa that I was on a hypertension study with suspected Acromegaly (noticed my enlarged hands & feet) in 1999 but the MRI came back negative for a tumour & Blood work was inconclusive. YThat course of action was dropped but Acro was still at work causing havoc---peripheral neuropathy, arthritis, had two knee replacements in 2006, fatigue. general all over feeling of not being well. I still did my exercises, ate properly but still gained weight. Same doctor in Oshawa that I saw once a year decided to send me to a neurologist (family doctor was working on spinal, neurological problems & probably hypochondria!) Had another MRI in December 2009, still no sign of tumour but GH was 7X higher than it should have been. Fast tracked to Dr Ezzat who found the elusive alien in the MRI (hyperplasic cells, not a simple tumour) March 2010, had first Sando shot at PMO & then monthly until September 2011 TSN surgery with Dr Zadeh. In remission right now but more to the story!