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DiscussionForteo: What is your Experience?
Osteoporosis & Bone Health | Last Active: Jul 20 9:29am | Replies (97)Comment receiving replies
Replies to "@loriesco Bone markers CTX and P1NP are best used to determine if a medication is effective...."
Thanks @gently! I am receiving treatment at UCSD. I'll inquire more but I think it had something to do with Tymlos doing its work over the next 2 years. Then 3 more years of reclast that gets me to 72 and then 10 years effective by your numbers and maybe I am too old to be treated?!
About the clicks - I was really dizzy, floaty, and not tethered to the ground if you know what I mean. I had nausea and headachey and tired. This was on the 8 clicks which I did for a month in the morning. Only through my reading (even though I inquired of the physicians assistant - she said discouraged any reduction in clicks) but when I saw her after I stopped one month - only then did she say to start on 2, 4, 6, to 8 moving up every week. But then I read that people were not going all the way to 8 - ever - on their regime. What is interesting - was that starting on 2 I had the SAME bad reaction as I had on 8! but I did see on this second month I was moving through the reactions. She also had me change to nighttime. I changed to before dinner, then after dinner.
My headaches and nausea have gone away. I was a little queasy this morning which disappeared with a good breakfast. I awoke at 5:30 am. But I don't wake so "enthused." I have a slow start. I feel like I am okay if I stay centered to whats around me -- but if I want to go out and behave "enthusiastically" (that was a great word you used!) I wouldn't be up for it. Stuck on 4 because I had a long drive, 6 seems okay and I should be moving to 8 about now... but I am hesitating.
I did a lot of work outdoors this weekend and it was slow go. I had something show up in my labs. A 5.5 on the cortisol. Low. I expected high. But like I said -- if I am low on the edge it means something. 2 years ago I was dizzy/lightheaded when I bent over and fatigued easy. Like now! I was laying down on the Tymlos. That was when I started with the endo dr.
I inquired about L Carnitine because it showed up as a deficiency in 2006 with Spectrum. Nobody responded about it. I started on an L Carnitine supplement myself and I got my "go" back. Fast forward to this spring and I acquired IC (interstitial cystitis). Great. Something else to contend with. So I stopped taking my supplements (expect D, Vesepa, biotin, E). Got really fatigued again and floaty. Had a low cortisol test. All of a sudden I realized that I might really NEED the L Carnitine and to stay on it. But my PCM doesn't know anything about it. She had me do the tests but no one looked at the results! Will talk to my doc about it and the endo guy but don't think I will get too far. Like you said - they are distracted and overworked. But my point is about "causation." In part, it might be I have an L-Carnitine issue that timed out with the Tymlos.
If we know that there is no longer a 2 year limit - what is important to know? That I take the dosage slowly to build up and I CAN take breaks around times where I need to focus to work or do I give up work for 2 years to accommodate the Tymlos (at which point I'm probably going to need to retire out of it.) you can google search my name Lori Escalera and click on google images and see my work. Chalk in the street.
I want to talk about the pain I associate with the Tymlos. That's a whole separate topic!
Thanks for your time! 🥰