Anyone have a preference of Tymlos or Forteo for side effects?
I have read that Forteo is a synthetic man made peptide from the perithyroid gland where Tymlos is a natural occuring peptide from the perithyroid gland. The side effects are brutal with either medication, but Tymlos reads as having less. Reading this site more people seem to be complaining on dealing with hard and longer lasting side effects with the Tymlos. Can anyone comment on their reactions to either? I am trying to decide which of the two evils to use.
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I've just finished 18 months of Tymlos and had only mild side effects from it. My spine improved from -3.2 to -2.4 which got me just over the line into osteopenia. My hips had little change (-1.9 to -1.8). I initially would get a little light-headed and have a racing heartbeat and feel flushed for a short time after the shot, but that didn't last (maybe a couple of weeks?). I always had a rapid heartbeat for a few minutes after the shot, but it wasn't severe. For me it was the right medication. Other people can't tolerate it. I also do strength training 2x/week & Pilates 1x/week & take vitamins (nothing fancy just D3 - no calcium while on Tymlos but have started that back too). Unfortunately there is no "right" answer - everyone is different and has different reactions. The good thing about both of them is that if you have side effects, once you stop taking them they are out of your system quickly.
I have posted on various other threads, but I also had a Reclast infusion last week - you have to do something to "lock in" your gains once you finish bone building meds. I was very nervous about it, but had no side effects at all. I will most likely have another one in a year.
thank you for the detailed response. Are you not supposed to take calcium with Tymlos? It says you have to take a lot with Forteo. I thought you had to take calcium with either drug? Do you also walk or use a weighted vest? My spine is a -5.1! Very fearful of the drugs but also of getting worse.
Both are synthetic medications. Tymlos is shorter acting (has a more transient effect on bone remodeling) than Forteo. It also has a lower occurrence of hypercalcemia.
I had fewer side effects on Tymlos than Forteo. On Tymlos, I experienced a faster heart rate (10% over normal) for 30 minutes after injecting, constipation, and some bone pain. On Forteo I had much worse constipation, fatigue and lethargy, and joint pain. I am now on Evenity and have had no side effects. I’ve only had one dose, though.
I have taken both Tymlos (five months) and generic Forteo (four months). I had to switch from Tymlos to generic Forteo because insurance dictated (husbands employer switched insurance company’s and the new one would only pay for generic Forteo). With both I have noticed being slightly light headed and sometimes a bit of a racing heart briefly after injection. As I progressed on Tymlos I was experiencing some weird shooting pains once in a while here and there, but I can’t be sure it was the Tymlos. They have stopped completely. I always took the full dose of Tymlos from the beginning.
My bone marker (the one that measures bone building) went down when recently tested, from when I was on Tymlos and after the months on generic Forteo. The doc said could be the med change. However, life has become a thousand times more stressful during the Forteo time (parent who I am a caregiver for having health issues), and I am not exercising as much nor sleeping well—so it may or may not be the med change….
I have been on Tymlos for two months now and am not experiencing side effects so far. Fingers crossed that continues.
I am waiting for insurance coverage to start meds; doc scribed for Forteo. I am a distance runner and working on finding my limits on miles. I am afraid to push myself like I have always done in the past. Has anyone worked through this or something similar?
Tymlos can cause your calcium to be elevated, so my rheumatologist had me stop taking it. I had bloodwork done a couple of times during the 18 months I was on it and both times my calcium was at the very top of the normal range. Yes, I do walk - usually just a couple of times a week. I haven't gotten a weighted vest yet, but I keep thinking I should order one! I was terrified when first diagnosed, but it kick-started my strict exercise program (that I love) and I've gotten a lot stronger. Balance is incorporated into my strength training and it has improved too - I thought I had good balance, but with practice it gets better! I was diagnosed just before I turned 59 and just turned 61. I was always active and didn't want to constantly worry that I might have a fracture.
We started Forteo with Mom ( age 79) after 2 years of Prolia and an atypical femur fracture and 1 year of Evenity with no gains. She made it about 45 days before side effects on the Forteo showed up. Severe joint pain , fatigue and overall malaise along with elevated calcium levels.. We stopped the Forteo and when we restart it, we will do it on an every other day dosing hoping to curtail the side effects.
We chose Forteo because overall it seemed to be the better option.
I've been on Forteo for 4 months and just the other day the body aches began. The current most painful area is the lower lumbar area. Also, walking seems to aggravate the pain. A couple of Advil and an ice pack on my lower back finally relieved the pain. I don't know if this is temporary or not. I did read that Forteo was most effective for the lower spine area so possibly that is the reason for the pain focused in that area. I have no information on whether Tymlos would fair any differently.
Good luck with your decision.
I am 74 and very sensitive to medications. I could only tolerate a half dose of Tymlos and took a half dose for 9 months. A higher dose of Tymlos caused dizziness, orthostatic hypotension and a queezy stomach. A REMS test showed significant improvement on my spine with no change on hips. A new endocrinologist wanted me to try Forteo. She thought that I needed a whole dose to help my hips. I was on Forteo for 6 months. At first, it didn't seem to bother me. During the 5th month, I noticed a lot of joint pain, leg vein swelling and pain, fatigue and brain fog. Both medications caused a distended abdomen and I gained 15 pounds with them. I was underweight before, so not the end of the world. My mother had dementia, so I was very concerned about the brain fog. I was also noticing that I didn't have the energy I needed to get things done. I have been back on a half dose of Tymlos for a week. My brain feels more awake, but I still have the pain. Both medications caused constipation and frequent urination. I was more relaxed on Forteo, but could hardly make it through the day. I have an endocrinologist appointment next week, and she doesn't know that I switched back. My recent DEXA showed significant improvement in spine and hips. However, my recent REMS test showed no significant changes. According to DEXA I have osteopenia, but according to REMS osteoporosis.