I went to see my current endocrinologist with my list of symptoms that I think are caused by problems injecting Sandostatin, and/or by taking too high a dose. He basically told me he didn't know what to do with me. No surprise there. I knew when I started seeing him that he'd only treated 4 acromegaly patients. My GH and IGF-1 are very good, both within normal range on 40mg every 3 weeks. And it's a noticeable improvement over the 40mg every 4 weeks. So technically my treatment is good, but I don't feel good with my current negative symptoms. He referred me to Stanford to see Dr. Katznelson. I'd already planned to see Dr. Katznelson a few months ago, but I've been putting off the visit. I hate to have to change my treatment, or to be suggested treatments I don't agree with. Not to mention it stresses me out to drive out to the bay area. My endo did lower my Sandostatin dose to 30mg every 4 weeks to see if that is causing my problems. But I didn't realize my primary doctor's office already had 2 months worth of medication on hand. So I had my 40mg injection yesterday, I'll get the 40mg injection in 4 weeks. Then I may go down to the 30mg, unless I happen to get into Stanford before then and have a different treatment suggested by Dr. Katznelson. I also got my enrollment form sent in for Sandostatin's mobile nurse administration program. I hope that helps. Thinking about changing treatment, and a friend currently planning to do Gamma Knife makes me wonder how many acromegaly patients respond well with radiation. The thought of losing pituitary function and needing HRT worries me. But having acromegaly symptoms uncontrolled by medication is a worry as well.
Tuesday, November 19, 2013
Monday, November 4, 2013
Drastic Change in Acromegaly Treatment
Hopefully I'm not rambling without making sense. Hopefully I do know my own body, and know what is right for me. I have a plan to drastically change my Acromegaly treatment.
In the last year I think my injections were done incorrectly. I thought I was experiencing scar tissue due to receiving injections of Sandostatin LAR for 6 years. My primary doctor had problems injecting almost every month, and there was some spillage of medication. My injections were usually done high on the buttocks. In the last year, I started developing these bubbles under the skin, as though the medication collected in one place, and was not distributing properly or quickly enough. I had some irritating symptoms in the last year. But on reflection, I had so much energy! I could work from home around 15-20 hours per week, entertain people at night, participate in other activities (even river rafting), no problem. My high blood pressure went away, even though I gained weight. I felt as close to "normal" as I ever have since developing Acromegaly.
But in the last few months, I asked the doctor to change the injection location based on the Novartis instruction booklet (rev. 4/04). Based on their booklet, the injections should've been done lower by about 2 inches. Since the change, I feel so very fatigued, and I have brain fog, memory and concentration issues, trouble speaking and conversing, so many more muscle and joint aches (arthritis-like pain), depression, anxiety, insomnia, and many more symptoms. I do remember feeling like this before my injections were done "incorrectly." What a difference!
I then looked at my history of treatment, and examined my GH and IGF-1 results since 2007 using an excel file. I felt pretty dumb for not doing so earlier. I'll blame trust in my doctor, and drug induced brain fog. On 20mg LAR my GH and IGF-1 actually increased. On 40mg every 4 weeks, my GH went down but IGF-1 was high normal. I think I developed high blood pressure due to higher doses of Sandostatin LAR, and possibly gained weight 15+ lbs due to this also. I was surprised to see that I have almost the exact same GH and IGF-1 results on 10mg every 4 weeks, as on the 40mg every 4 weeks! On the 40mg every 3 weeks, I did see a bigger decrease in GH and IGF-1, but it's not worth the side effects! Hopefully my endocrinologist will agree with me. I want to completely stop the Sandostatin LAR, then reintroduce at 10mg if necessary. I may have to be a bad patient and not listen to him though :-) Or change endocrinologists! I'm very stubborn, in many ways I am my own downfall. I've always insisted that a doctor perform my injections, rather than a nurse. I think I may try to be smart now though, and try to utilize the Access Sandostatin / Mobile Administration Program. A trained traveling nurse to perform injections at your home or other convenient location, what a concept!
EDIT: An Acromegaly friend advised me of a potential problem when stopping Sandostatin. She knows another person with Acromegaly who did the same thing and his IGF-1 went up rapidly. He ended up having to increase the dose of Sandostatin and start Dostinex to get back to normal levels. I'm definitely taking this step seriously, and am planning to monitor things closely if that's the decision I make. If nothing else, I'd like to decrease down to 20mg every 4-6 weeks.
In the last year I think my injections were done incorrectly. I thought I was experiencing scar tissue due to receiving injections of Sandostatin LAR for 6 years. My primary doctor had problems injecting almost every month, and there was some spillage of medication. My injections were usually done high on the buttocks. In the last year, I started developing these bubbles under the skin, as though the medication collected in one place, and was not distributing properly or quickly enough. I had some irritating symptoms in the last year. But on reflection, I had so much energy! I could work from home around 15-20 hours per week, entertain people at night, participate in other activities (even river rafting), no problem. My high blood pressure went away, even though I gained weight. I felt as close to "normal" as I ever have since developing Acromegaly.
But in the last few months, I asked the doctor to change the injection location based on the Novartis instruction booklet (rev. 4/04). Based on their booklet, the injections should've been done lower by about 2 inches. Since the change, I feel so very fatigued, and I have brain fog, memory and concentration issues, trouble speaking and conversing, so many more muscle and joint aches (arthritis-like pain), depression, anxiety, insomnia, and many more symptoms. I do remember feeling like this before my injections were done "incorrectly." What a difference!
I then looked at my history of treatment, and examined my GH and IGF-1 results since 2007 using an excel file. I felt pretty dumb for not doing so earlier. I'll blame trust in my doctor, and drug induced brain fog. On 20mg LAR my GH and IGF-1 actually increased. On 40mg every 4 weeks, my GH went down but IGF-1 was high normal. I think I developed high blood pressure due to higher doses of Sandostatin LAR, and possibly gained weight 15+ lbs due to this also. I was surprised to see that I have almost the exact same GH and IGF-1 results on 10mg every 4 weeks, as on the 40mg every 4 weeks! On the 40mg every 3 weeks, I did see a bigger decrease in GH and IGF-1, but it's not worth the side effects! Hopefully my endocrinologist will agree with me. I want to completely stop the Sandostatin LAR, then reintroduce at 10mg if necessary. I may have to be a bad patient and not listen to him though :-) Or change endocrinologists! I'm very stubborn, in many ways I am my own downfall. I've always insisted that a doctor perform my injections, rather than a nurse. I think I may try to be smart now though, and try to utilize the Access Sandostatin / Mobile Administration Program. A trained traveling nurse to perform injections at your home or other convenient location, what a concept!
EDIT: An Acromegaly friend advised me of a potential problem when stopping Sandostatin. She knows another person with Acromegaly who did the same thing and his IGF-1 went up rapidly. He ended up having to increase the dose of Sandostatin and start Dostinex to get back to normal levels. I'm definitely taking this step seriously, and am planning to monitor things closely if that's the decision I make. If nothing else, I'd like to decrease down to 20mg every 4-6 weeks.
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