Tymlos pro/cons

I just got my DEXA results back. This is my second testing after having one done in December while I was taking Strontium. I have been on Tymlos for 6 months and now take 40 mcg, a half dose nightly. My DEXA results on Strontium were so impossibly good that I wanted to be retested. I stopped taking Strontium for 26 days. I then compared my current results with my results from December, 2021.

My lumbar spine has improved from -2.9 to -2.2.
My right and left femoral neck did not change significantly.

I believe that the improvement in my spine is from the half dose of Tymlos. Does anyone know how to calculate the percentage of improvement? It seems that I saw it somewhere on this website but I am unable to find it.

@drsuefowler the percentage change is always on my report.

The effects of strontium won't go away if you stopped for 26 days.

That seems like a big change on half dose of Tymlos for 6 months but who knows. It would be great if you could find a radiologist who could tell you what the gain is while doing a calculation for the strontium.

@windyshores, There is no percentage change on the report. Even if there was the comparison would be between today's scores and those December, 2023.

The change from December is as follows:
L1-L4
12/23 -2.3
5/24 -2.2

Left femoral neck
12/23 -1.7
5/24. -2.3

Right femoral neck
12/23 -2.2
5/24. -2.7

As you can see, my hip scores went down without Strontium. Although my DEXA scores were never very bad, I have broken 5 bones in less than 2 years. The last one is a fragility fracture that is not yet healed in 4 months.

There is no significant spine change. I am not sure what effect stopping strontium for just 26 days might have. Strontium is not a potent med, so maybe it could not keep up with changes in your bones at the hip. I don't know- does your doctor? Then again, my reports say not to use femoral neck to measure changes!
How was your hip and total hip?

What bones did you break? So sorry!

They only measured femoral neck. I asked several times to have Strontium taken out, but the wouldn't do that. I broke my shoulder and ankle last summer. I fractured my foot and hand the summer before that. I had a fragility fracture this February from going on a walk.

At times I have extreme headaches and dizziness, some nausea. So need to plan to do injection when you have time to lay down after. I am going off due to diarrhea that has forced me to change diet (less fruit and vegetables, more starch) and carefully manage my schedule.

Tymlos side effects vary in degree and type. If you are a sensitive person ( like me) start with a partial dose and gradualy titrate up. I increased too quickly and expereinced severe weakness, severe heart palipations and loss of stability - but restarting at 20mgs ( 2 clicks) and takign coconut water ( 2-4 cups throuhgout the day) for the heart palipatations, then gradualy moving up one click at a time ( each stage 1 1/2weeks) proved to be worakable for me I suggest taking it at night about one hour before sleep. 6 months into the course I expereinced upper stomach pain, digestive issues , hair fall out and odd taste in my mouth - so I worked with an ayurvedic doc who put me on digestive enzymes and bile support and helped to bring down the 'heat' in my body. Now I am managing well . Everyone is different and of all the medicinces, tymlos appears to me to have the least long term issues. Eat a good diet - rest and meditate to bring down stress. I recomend you read Great Bones by Dr Keith McCOrmick - it will help you understand the factors that effect the bones. May your healing path find support and strength. Try not to worry - and approach each issue believing that changes can be made to bring the best possible result for you.

Good morning! This is a nice group since my endocrinologist office is MIA. When I have surgery or have been on Hep C meds there has always been a support nurse. Where do you turn in the middle of the evening for help?!
(guess that is question 1)
I was on Tymlos for 1 month (8 turns) but went off for a month. I was restarted on 2 for a week and now 4 but when I ASKED about starting on a lower dose I got a deer in the headlights look. I see that a lot of you are!
I called Radius Pharm and gave them tons of info and THEN they said ask your provider for the answers. Ask your provider to get a scientist liaison case worker assigned to your case. But my dr. has made an appt in 4 weeks from the ask. I am miserable NOW.
I do see my headaches went away and my nausea is going away and I am not as dizzy on the lower dose. However when I started on the 2 turns it was the same misery as the 8 turns.
The nurse assistant said that I should hold out for 8 weeks and "magically" all adverse effects disappear as one's body adjusts to the meds. What do you think about that?
I am having EXCRUCIATING teeth, jew, gum pain. It waxes and wanes and it moves around. I have no temperature, no swelling but it knocks me for a loop. The worst of it on the top and bottom where I had a permanent tooth extracted when I was 8 or 10 in prep for orthodontia work. I went to the dentist and he found nothing (before I realized it could be the Tymlos!) he wants me to go to my endodontist specialist which will cost $600? I spent $145 at the dentist for "nothing is wrong." So I'm hesitant.
I take opiods for 25 years for degenerative disk disease pain. I am stable and not addictive and don't take if I don't have pain. But I've had to take more because of the teeth pain. Yesterday my nurse neighbor said to take Ketorolac (toroidal) which I had leftover from a hospital visit. That works great and I have taken a few of those. But I am very very VERY careful what I will put in my body. I don't feel like my doctors for this medicine do any more than read the insert which came in the box. (I read it, I know!) In the places I have this excruciating pain I have had issues of some kind at some point in my life. I have no temperature - just excruciating nerve pain I think. (I get canker sores/Herpes 1) in my mouth and it feels the way it does before one erupts at the back interior of my jaw.
So my primary question to you is does this sound familiar? If you've experienced this pain is it targeting a problem area? Does it go away? Should I consider stopping and starting again? (I had it the first month before I stopped and the pain went entirely away - I didn't tie it to the Tymlos until I started the meds again and it came on after a few days slowly.
Also - If you've gotten this far, I want to chime in on the DEXAs - I have had only osteopenia and then my DEXA showed I no longer even had that. I was normal! (I take care of my body!) Then I had cervical spine surgery and my C5 vertabrae fell apart like paper in the dr.'s hands! I asked my world renown surgeon "what gives?" Since I can't have DEXA on my hips/lumbar they are on the smaller joints and they aren't necessarily reflective of a true condition. PLUS - if you don't know - you need to have your DEXAs done on the same equipment, medical provider and same bones as closely as you can because the settings are most consistent from year to year.
thank you. Any guidance is appreciated!

I completely agree that we each need a science liason. I disagree with magically thinking nursing assistant a
You might stop Tymlos again to ascertain that it is the medication. Then you could try the windyshores' incremental method with pause and reversal at any return of symptom.
Curious that the toradal helped even without noticeable swelling. Good neighbor, good advice.
Tooth and jaw problems haven't been evidenced in clinical trials. Bone pain is a signaled effect.
I haven't read patient reports of jaw problems with this medication.
I think it must be related because it went away when you stopped the med. Another test would be more evidence. Bone pain is a common side effect of Tymlos.
Your endocrinologist could switch you to Forteo.

Keep posting.

In my experience, starting at 2 clicks and moving up slowly, my body did adjust. The process was not without side effects. I never really made it to the full 8 clicks but was happy to make 7 most of the time and had excellent gains. This is a hormonal medicine and I do believe for many of us the body gets used to it.

You can also play around with timing. I switched to morning and headaches stopped. Kind of a mystery. I found that taking calcium an hour before helped- I discovered that by accident and it makes no sense since Tymlos raises calcium but maybe it needed that extra supply. And I stopped resting in bed, found that I felt better getting up and out.

We are all different. The titration method has helped a lot of us get on this med. I actually miss my Tymlos believe it or not.