This is my description of wha I felt while going through all the treatments and living my life with this awful disease
Friday, August 3, 2012
The never ending story
This is the song that never ends, it just goes on and on my friends.......
My last appointment with my endocrine was on March 9 2012. The last few appointments I have had with her she told me that she was concerned about my ACTH levels because they continue to be ridiculously high. I had more blood work done and again my levels were higher than she would like.
She told me about a new medication at my appointment in September. It is called Dostinex. Dostinex is primarily used to inhibit the production of prolactin cells. Which is not my problem, but in recent studies it has been very effective in doing the same for ACTH. I told her in September that I wanted to hold off on using this new drug because of its side effects. The side effects include: nausea, constipation, dry mouth, frequent gastric irritation, vomiting, and dyspepsia. sleep disturbances (including insomnia), vertigo, depression, hallucinations,hypotension, and heart palpatations to name a few.
Well at this particular appointment on March 9 2012 I was told that it was my best option to start this drug and I probably wouldn't experience any of the side effects, and if I did they would be slight. Well let me tell you I have been taking this medication for a few months and I have been sick (vomiting), most days I feel like I am in a boat (and I am a flat lander, I don't do well in boats), and I just feel YUCKY! I really hope this medication is working cuz it is BRUTAL!
It got me thinking, for the last 7 years I have been poked, prodded, stared at, cut open, blasted with radiation, cut open some more, I have a pharmacy in my purse, and I still don't see an end in sight. I try and stay positive, but I am starting to break. The hardest part is that I have lost 30lbs TWICE now... and gained it ALL back. I can't keep the weight off and trust me I am trying. I hate being stared at in restaurants when I have to take my pills, I hate having to fly to doctors appointments by myself. I HATE THIS!!!!!!!!! I hate feeling FAT, I HATE having to take pills EVERYDAY! I hate how I have to always think about what would happen if I got in an accident, I ABSOLUTELY HATE HOW NO ONE UNDERSTANDS WHAT I AM GOING THROUGH OR HOW I FEEL....
I HATE IT!
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I've been on Dostinex for the past 3 years with a short break of a few months to add in another med. Starting it was the hardest, but then I adjusted and got the best results I've had with any med, my ACTH never got down to normal, but it came down a lot and hovered just above normal for about two years. Nearing the 3 year mark it stopped working though and that's why I had to stop it and start another med, but now I'm adding the Dostinex back, so I'm on that rollercoaster again right now until I adjust. I totally understand how you feel. :(
ReplyDeleteThank you for blogging your experience. My girlfriend is at the start of this road. Just been diagnosed. :-(
ReplyDeleteIf you or your g/f ever need to talk to someone who has been through it I would be happy to lend an ear!
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