Tymlos side effects I've encountered

@sunny65 how soon after your injury did you have the MRI?

What does your PCP say?

It's not that I am knowledgeable, just have a lot of experience with back issues including fracture! And with Tymlos....

Can you go to a good PT? I have found they are the best at figuring out what is going on. Second best is an orthopedist who does not do surgery.

It may get better...my neuro always tells me to wait 6 weeks before pursuing but in the case of pain like this, I hope you can find a good physical therapist. Your PCP can write the prescription.

@windyshoes,
Do you mean I should stop squeezing my skin while the needle is still in? I always have a bubble of medicine on the needle when I take it out. I asked the endo's nurse about the bubble and she said it was alright. I worry that I'm wasting medicine.

I let go of the skin as it is being injected to avoid medicine leaking. So pinching up allows the needle to go into the fat area, initially, but I let go simultaneously with the injection. I am so used to it because my kid has type 1 diabetes- 30 years of shots- and am realizing it is tricky for others!

Thanks you. I didn’t speak to the doctor, I spoke to someone in his office. I’m hoping there was a miscommunication. She sounded very frustrated by my questions. She did tell me it came with the needle but made it sound like it was already attached. When I started asking questions she told me to make an appointment with the doctor.

I am looking for a new doctor, preferably an endo but most do not get very good reviews here, so may try Mayo. With other doctors I can ask questions without an appointment or go through the portal. I can use the Tymlos nurse for questions.

I was fortunate to get appt quickly to a Bone Health Specialist and get my meds from a Specialty Pharmacy who were great educators . Get a different Dr.

I had a broken jaw in 1981. I had ended up with TMJ and had to wear braces for 2.5 years as an adult to straighten my face. No problem ever since. I just took my fourth shot of Evenity and have not had any side effects. In my case, I have had a total hip replacement 12 years ago. I just had a crown break off for no reason. I have to have what is below the gum taken out soon as infection from the mouth can travel to the hip. After discussing with the doctor who had prescribed my Evenity, and the oral surgeon, I feel pretty good about it. Last year, I slipped in my bathroom and have a Burst Compression Lumbar I Fracture along with a couple of other things. I could not have surgery to fix my issues due to my bone strength. I also can't stand for over five minutes at a time. It's going on 2 years now and I can't wait until I can get surgery. I am so glad that I am on Evenity and will deal with whatever if anything happens. My oral surgeon will be monitoring my situation and can fix it is something goes wrong. The risk is worth it for me. I will endure whatever happens if it happens.

Hello dianestanley, I have just been diagnosed with osteoporosis in my 60s. This was so unexpected because I thought I was being careful and taking care of myself. My dr said that sometimes it's just genetics.

The reason I noticed your post is because I have a lot of issues with my teeth and jaw too.

I have not started on any osteoporosis medication since getting the diagnosis a week ago because I am scheduled to get a dental implant this month. I read that I will need a 6-9 months for the implant to completely heal so I am looking for bone building medications as an alternative to bone preserving medications like Fosamax. So I may be on a bone building medication like Forteo and Tymlos soon in order to take me through the 6-9 month period that my dental implant will need in order to heal.

It sounds as if you have a good oral surgeon. What I am finding is not all oral surgeons or drs are equal, some are better than others and that is the main reason people do better or don't.

That said, which oral surgeon are you using?

Also, do you have a bone doctor who treats you with the Evenity?

I am currently with a GYN doctor who diagnosed my osteoporosis but it would seem I need to find a bone doctor or an endocrinologist who understand parathyroid affecting drugs like Forteo and Tymlos and their effect on the body, how to take and monitor it.

I will travel cross country if I have to in order to make sure I have a good oral surgeon.

Another thing, I know this could happen to me soon because I am experiencing problems with my right hip. When you had your hip replacement did you have osteoporosis then?

Thank you so very much for any information.

Has anyone just stayed on a low dose ( a few clicks) of Tymlos for the 18 months? If so, what was your experience? Did you still improve on your bone density score?
Thanks to anyone who can help.

@lnl, I am on 4 clicks and plan to stay at this level. I am very sensitive to all medications and petite. I have been on Tymlos for 5 1/2 months and started at 2 clicks. I recently learned that I can't just buy the pens every 2 months. I started my third pen the other day and the side effects all came back on the same 4 clicks. I can tell that the medicine is so much stronger than what I was taking before, even though I always refrigerated it.

I am also learning that all 3 of the anabolics, Tymlos, Forteo and Evenity, appear to only help trabecular bone and make cortical bone porous. I broke my 2nd metatarsal in my foot. After 11 weeks it still has not healed on Tymlos. This is the 4th fracture in less than 2 years and all others have healed quickly. I wonder if the problem is the Tymlos. My endo wants me to keep taking it for my back (which has never fractured but has poor density according to my DEXA scan). My orthopedist suggested not taking it for a couple weeks to see if it helps. I am scared to do that. Does anyone know how soon you have to take a bisphosphonate after Tymlos?

I stopped Tymlos after 6 months last October. I couldn't take all the side effects. I never really got beyond 4 clicks (once or twice on 5). In that short time my spine numbers (trabecular) increased (spine was not the problem), and one hip increased and one hip decreased (cortical). To answer your question at the end: since the goal of the bisphosphonate is to "lock in" gains, the sooner you start on it the better. My endo told me I could/should start immediately, but I took a week or two just to give myself a moment without taking anything. I struggled a lot with Tymlos, got wonderful support from people on this site, but ultimately I couldn't do it. Also, my hair (not all) fell out. I just couldn't do it.