Taking Tymlos but Forteo recommended
Has anyone switched from Tymlos to Forteo and had fewer side effects? I went to a new endocrinologist today. She said that in her experience, people on Tymlos have more side effects than those on Forteo. She said that there is more problem with vasodilation on Tymlos.
I have been on 40 mcg of Tymlos for 7 months. I am not able to tolerate a full dose. I have low blood pressure, am a fall risk, have fatigue and have swollen, painful veins in my legs. The original trial reported that there is spine improvement on a half dose after 6 months, but no improvement in hip. They decided to then try 80 mcg which is what they ended up with. The doctor said that the bones I have broken are cortical and it would be a shame not to improve those bones in addition to the spine. When I asked about Evenity, she wanted me to finish a course of parathyroid medicine first. She put in an order for Forteo and we'll see if insurance will cover it. I asked her if I could go back to Tymlos if Forteo didn't work and she said I could. I am scared to try a full dose of Forteo.
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I could not tolerate Forteo but others have.
Have you tried hydrating and eating salty things? I don't know why but in general eating helped. I also got up and walked around in the last months after resting after the injection made me worse. Everyone is different.
Do you have a blood pressure cuff? Have you had gains on 40mcg? If you could get to 60mcg that would be great. Maybe 40mcg is helping you. Are you having a DEXA soon?
@drsuefowler,
Forteo is a lower dose of medication 20mcg as compared to 80 mcg in Tymlos. You may have an easier time with Forteo. Some have a reaction to the preservative in Tymlos, which you won't have in Forteo.
Neither Tymlos nor Forteo have great reputations for increasing density in cortical bone. It may be that reduced density is a partial key to cortical strength,
https://engineering.princeton.edu/news/2024/09/16/toughen-cement
If the swelling in your legs is cardiac related, Evenity might not be a good medication for you.
I'm taking Forteo with good density gains after 17 months in the spine but not in the hips. I do have reduction in fracture risk, and am confident that the hips are more resilient
Keep any leftover Tymlos pens in the refridgerator if ( and hopefully) you are able to switch to Forteo. I'm rather eager to try a round of Tymlos after two or three years of Forteo. I'm guessing that there is more cortical acquisition with longer application of the medications.
Thanks @windyshores for your response. I had a DEXA in May and it showed an increase from -2.9 on 12/21 to -2.2 for lumbar spine. Left femoral neck stayed stable at -2.3 and right femoral neck stayed stable at -2.7. So with these results, I think that there is improvement in my spine. Unfortunately, REMS results are worse. Spine was -3.1, left femur was -3.3 and right femur was -3.4. I wonder if staying on 40 will show further improvement or just trying to get to 60 would be tolerable. I don't know if Forteo is really that different from Tymlos? I am trying to drink a lot of water and will try salt.
@drsuefowler those are nice gains! Do you have a blood pressure cuff? I would say my bp went down 20 points in bed. I wonder if activity raised it. I never checked. I ate potato chips and drank water for awhile but then stopped and just did the injections 🙂 I was never without side effects, believe me. But tolerable. Maybe you can stay on 4 and inch up to 5. My doc was okay with 4, happy with 6, very happy with 7!!!! I noticed also that my reaction varied from day to day, not sure why.
Thanks @gently. Do you know which ingredient in Tymlos is a preservative? I was trying to compare the ingredients in the two medications. I'm so glad to hear that Forteo has given you good gains in your spine. It sounds like Forteo has been easy for you, since you plan to stay on it for two to three years. Unfortunately, I was unable to access the Princeton article you cited. It is an interesting idea that reduced density may be a partial key to cortical strength. I think that you are probably right that longer application of these meds may be needed to help cortical bone.
@drsuefowler
"Each mL contains 2000 mcg abaloparatide and the following inactive ingredients: 5 mg phenol, 5.08 mg sodium acetate trihydrate, 6.38 mg acetic acid, and water for injection. Abaloparatide is a PTHrP(1-34) analog which acts as an agonist at the PTH1 receptor (PTH1R)."
A comparison of sorts of the two drugs is buried in this https://www.dropbox.com/scl/fo/3cw4ss6rwg77qb0geoqab/ADJcZRegctE8u8ClreaEaq4?e=3&preview=Update+on+clinical+uses+of+osteoanabolic+agents+-+John+Bilezikian%2C+MD.ppt&rlkey=4h9kqq49dycjzru5yfpmis3qo&dl=0
pgs 27 to 30 or so.
Sorry about the link. Here is a language dense version https://pubmed.ncbi.nlm.nih.gov/39252668/#:~:text=Cortical%20bone%20is%20a%20tough,curves%20(R%2Dcurve).
Forteo has been an easy pharmaceutical for me. My blood pressure drops 20 points on the systolic. Even thouth my blood pressure is already low, I never feel dizzy or unbalanced. I always take water and salt before, anyway. Oh, I hope you have luck with it.
@genlty I cannot access that link. I thought cortical porosity was a key to flexibilty, but not strength. I have not seen any studies on this idea or the one you cite, and wish I could read it.
I have noticed that treatment, at least with Evenity and Reclast, has made me stiffer, less able to lift or reach w/out pain. I don't recall this effect with Tymlos. It does make me wonder about bone density vs flexibility.
@windyshores, the strength come from flexiblility. The bone can bend instead of breaking. Analogies are are fraught, but when think of the trees that bend in the wind and the other trees send broken limbs flying you are noticing the porosity of the wood. Dense, heavy limbs break.
Sorry the link isn't working. Here's an alternate. https://www.sciencedaily.com/releases/2024/09/240916153447.htm#:~:text=Inspired%20by%20the%20architecture%20of,damage%2Dresistant%20than%20standard%20counterparts.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5601257/
This article is aged. If you look at it let me know what you think. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5601257/
@gently I should have used "density" not "strength." My personal feeling is that as my density increases, my flexibility is going down. Specifically reaching and lifting feel different. I am sure my fracture risk is better even if increased density means lower flexibility. I get the concept. I would be interested in studies and articles relating humans rather than buildings 🙂 (I did not have kyphoplasty for any of my fractures because the dense glass-like concrete might b liable to crack.)
@gently ,
The Santa Fe Bone Symposium article was very helpful in comparing all three anabolics. When do you take your Forteo? My blood pressure runs about 90 over 60, sometimes lower. I have been taking Tymlos before bed so I don't notice the side effects. When I tried the full dose, the side effects, dizziness, headache, nausea, fatigue, lasted all the next day until about dinner time. Now, I rarely notice them during the day, except the fatigue. I have a blood pressure cuff so I will check how the medicine affects B/P. Thanks so much for your help, both you and @windyshores. It is so nice not to feel alone in this!