Just Started Tymlos Injections Has Anyone Had Experience With TYMLOS ?
In answer to whether Tymlos is an option after Forteo TX, the answer I was given by my endocrinologist—and the PDR reference that comes with Forteo and Tymlos—is only if either/or don’t exceed two-yrs’ worth of use. In other words, if you do Forteo for one yr, you can do Tymlos for one yr, but never to exceed two yrs for either one combined. There’s a black box warning with both medications. Read the PDR included with each delivery of Forteo or Tymlos. It’s very clear.
I failed Forteo. I was on it for 1 yr. After the 1 yr follow-up labs, my endocrinologist and I were terribly disappointed I’d failed the TX. I’m now on Tymlos and will stay on it for only one yr, since I’ve already used up my other allotted one-yr TX with Forteo.
I had no side effects with Forteo. However, I have exhibited side effects with Tymlos, some mild, others worrisome. I have occasional, acute gross hematuria, which resolves after one day, until the next episode. This is probably a result of the calcium crystals created by Tymlos for the extra osteoblasts required to created bone. I now have long-bone muscle spasms. I have palpitations 30 minutes after I inject Tymlos. My brain is foggy (like chemo brain). My hair falls out, not often but I see it on the bathroom floor everyday when I comb my hair.
Bottom line: Tymlos has been and is very hard on most of my body systems, but I know the positive outweighs the negative effects, so I’m staying on the Tymlos.
Yes they are daily but are painless very small needle.
Just another thing to do every day
Janet,
I, too, forgot to mention the fatigue. I experienced such fatigue when I started Tymlos, but it eventually went away—slowly—in about 6 wks. It was all I could do to muster the energy to stay awake all day. I’m an active and energetic person, so this symptom was a huge setback for me. Today, my energy level is fine. The dizziness was another matter. Coupled with the foggy brain, I felt wasted and my thought processes were diminished. But eventually, the dizziness disappeared after about 2 months. The foggy brain comes and goes—mostly goes. Hopefully, your symptoms (dizziness and fatigue) will resolve as you continue Tymlos.
I think I bragged too soon! I've been using Tymlos for 28 days. The last couple of days I'm so tired all I want to do is stay in bed! I'm in so much pain & having fibromyalgia does not help! The other thing is dizziness - vertigo. I always have seasonal depression from Thanksgiving to after New Years & I'm sure that's not helping. I'm so thankful to have this site & all you fellow osteo-warriors!
Janet,
The spasms I experience are random, at best, 2–no more than 3–times weekly, and usually are experienced bilaterally in the vastus lateralis—the outside of my upper thighs. At times, a spasm sometimes occurs where my thigh meets the center bottom of my hip bone, near where the groin starts.
The feeling is confined to about the size of a quarter, and feels as though the muscle is punching itself. Usually, it’s just a bother, resolving in an hour or so. But last week, the spasm was a tad painful and sporadic, lasting all day, but it then resolved. Sometimes a bicep will twitch, but as I said previously, the muscle affected is usually the vastus lateralis.
Thanks for your prayers. I have you in mine. I’m at the half-way point with Tymlos, so only 6 more months to go!!
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