First TYMLOS dose completed - 2 year journey begins

Posted by esb13 @esb13, May 24 8:41am

I had my first TYMLOS injection last evening. Based on the feedback in this forum, I selected to start at 6 clicks. I am so grateful to everyone for sharing their experiences! I am happy to report, I had zero side effects. I will jump to 8 clicks tonight. I also was able to learn ALOT from Great Bones (and thanks for everyone who suggested that book) such as I asked my doctor for a baseline P1NP level pre injection and will get another one at 3 months to see how I am responding to treatment as he suggests. I find being partners with your provider on this journey is best and ask ask ask questions! If all goes well and my spine can get out the osteoporosis range after this treatment, I will "lock-in" results with Reclast. I have had reclast in past which kept me stable and other than the first year, side effects were minimal and easily helped with Tylenol.

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bluebonnet242 | @bluebonnet242 | May 24 10:52am

I’m glad your first injection went well! I’m starting my first one tonight and hoping for the best!

esb13 | @esb13 | May 24 11:08am

Congrats on starting your journey! One day at a time is my new motto. Are you going to start at a full dose (8 clicks)?

sue417 | @sue417 | May 25 7:49am

Hi
I have a compression fracture t8 spinal this yr well be my 3rd reclast. Did you have to switch meds after your 3rd dose. Is tumlos another bisphosphonate?

bluebonnet242 | @bluebonnet242 | May 25 9:19am

In reply to @esb13 "Congrats on starting your journey! One day at a time is my new motto. Are you..." + (show)

I started at 3. I was really anxious about starting it. Thankfully, no side affects!

dooshie | @dooshie | May 25 12:21pm

Hello…can u please tell me what side effects you had with Reclast in your first year? I’m about to begin another protocol after 2-years on Tymlos, and Reclast was the recommendation but I’m pretty concerned about a medicine that is infused once a year. With Tymlos it’s every day and if side effects were bad I could have skipped a couple of doses or only used half the dose. With Reclast, the medicine is in your body for a year. That does concern me.

bluebonnet242 | @bluebonnet242 | May 25 2:23pm

In reply to @sue417 "Hi I have a compression fracture t8 spinal this yr well be my 3rd reclast. Did..." + (show)

Tymlos is an anabolic.

esb13 | @esb13 | May 25 3:17pm

In reply to @dooshie "Hello…can u please tell me what side effects you had with Reclast in your first year?..." + (show)

I’m sure your care team will advise you to drink 8 oz of water right before infusion and take two Tylenol the morning of. This helps with side effects. For me, the first dose I did not do this and by that night felt like I had a bad flu. That lasted 12ish hours. I had 3 more infusions over the years and had no side effects again. I hope this helps! Good luck.

dooshie | @dooshie | May 26 12:24pm

Thank you so much for ur reply. Yes, I had heard that drinking water and taking Tylenol helps with the side effects. I’m so glad u didn’t experience anything after that first dose. 💕

sunny65 | @sunny65 | May 30 10:24am

In reply to @bluebonnet242 "I’m glad your first injection went well! I’m starting my first one tonight and hoping for..." + (show)

Hello. Could you please share your experience with your first injections. I had a horrible back pain and did steroid shot. Didn’t help at all . Actually, it given me. nerve pain and my neurologist put me on Lyrica. I am so afraid to start Tymlos with all these problems. Not sure if I should wait till Lyrica starts working and my nerve pain lessens or just start regardless of everything.

esb13 | @esb13 | May 30 10:50am

In reply to @sunny65 "Hello. Could you please share your experience with your first injections. I had a horrible back..." + (show)

I’m so sorry to learn of your back and nerve pain. That is so tough. Hoping your endocrinologist will take the time to listen to all you’ve been through and together you can determine best next steps. For me, I’ve been on full dose (80, or 8 turns) of Tymlos for 7 days. I inject in the evening and feel blessed that I have not had any side effects. Everyone is different in side effects and results. I’m hoping for improvement in my spine to get me out of the osteoporosis category. I asked for a baseline P1NP and will check again in 3 months to see if my body is responding well to the Tymlos. I am trying to have a one day at a time attitude and continue to try to build muscles and strength through yoga, exercise and weights. Best to you!!