Dosage Adjustments On Tymlos Pen

@diane0202 as you turn the end of the pen, the pen actually makes little clicking noises every 10mcg. The pen doesn't have any window showing dose. Full dose is 8 clicks of the pen, or 80mcg.

I don't think you get much at all with once click. I started with two but understand if people are nervous, starting with one is reassuring. It may not be necessary to wait a whole week between dose changes at first but after I got to a half dose, I did slow down my ramping up.

I believe therapeutic levels start at 4 clicks. Or so my doc said. As I wrote before, there WILL be some side effects for many but for many of us they fade in time.

Have you had a positive response in terms of DEXA score gains? Are you still on it? What are you planning on taking to maintain the gains you have made on Tymlos? Do you know how long you have to stay on the secondary treatment, for example alendronate? Thank you! I am so afraid of taking the drugs, but equally afraid what will happen if I don't do anything except exercise, diet and supplements. My spine DEXA is -3.6 and I am 67 years old.

Hi-- I'm in the 110 pound club, too. I'm approaching month 5 on Tymlos and I'm only at 4 clicks-- it's all I can tolerate. I ramped up very slowly (I started at 1 for several weeks). I will be having a Dexa scan at month 6 to see if I have made any gains on the half dose. I will report to this site. I have had a lot of side effects and struggled to stay on this drug. It was often thanks to the support of the women on this site that I stuck with it. The tachycardia was the first issue I dealt with. I have managed that by lying down and elevating my legs after the injection. It absolutely helps. My other main side effect is serious hair loss, and this is psychologically very difficult to deal with. It might end up being the deal-breaker. So, recommendations for you: As so many other people on this site have recommended, ramp up the dosage. The time frame for upping your dose is utterly personal: people have reported going up each day-- some each week. Me? I was on each click for weeks at a time. Second--You'll probably need some time to get used to the shot. When I first started it hurt, left a red mark, and sometimes I even drew blood. Not good. I'm a pro at it now. Give yourself some time to figure out the injections. Feel free to ask more questions. Everyone here is so generous with their time and advice.

Thank you! I am getting cold feet to be honest. Scared to take any of this stuff and scared not to..

I think that accurately describes all of us.

Exactly..at least we have each other for support. I have totally lost confidence in doctors and drug companies.

I have found that even with side effects, the Tymlos is ultimately possible, even tolerable, unlike some other meds I have tried. I am certainly motivated by the pain and disability of fractures already experienced.

I believe I introduced the idea of ramping up on this forum. It was a necessity for me and it seems for many of us. But I don't want to give the impression that this entirely gets rid of side effects. If you wait for NO side effects before moving the dose up, you may not get the benefit of the drug.

I found side effects changed and for the last months fatigue was the main one. In the first month I had a headache that went away, some dizziness and nausea. Tachycardia on Tymlos was nowhere near as bad for me as it was on Tymlos. Side effects DO ease up in time but I hope everyone can keep pushing up the dose and not waiting for total absence of them 🙂

Things that helped me: switching to morning (my heart is wobblier in the evening and evening dose was giving me a morning headache). Hydrating well. Calcium two hours before (and D +K). Salty crackers with the shot. Most of all, I learned not to stay in bed. For me, surprisingly, side effects went away if I got up and out. For months I stayed in bed and felt horrible.

Some people can't get up, I'm sure, but I have found that is the magic answer for me. I am wondering if activity raises the blood pressure that Tymlos tends to lower.

hi @diane0202 . I had a DEXA at the 18 month point and had 20% gain in spine (from severe -3.6 to borderline -2.5) and 9% gain in hip. My femur neck is still a problem.

I am extending to a full two years because we were waiting to get clearance from my kidney doc. I am now scheduled for Reclast in late October. My endo wants to do a "test dose" of 20% and then three months later I will tell him what dose I want. I have read that a half dose is effective (2.5mg). I am to hydrate day before, day of, day after with salty liquids. Slow infusion. I believe monitoring will determine how many infusions I have but overall there is a good chance of having a med break (unlike with Prolia).

thank you!

I am so glad that I found this discussion! I tried the whole dose of Tymlos last Spring and had to quit after 3 days due to terrible side effects. This fall, I asked my endo if I could try half a dose and was surprised that he said I could. One night I tried 2 clicks thinking that that was half a dose. I wasn't sure I was getting any medicine, so I checked the clicks and figured that I was wrong that 4 clicks was half a dose. I was so sick on 4 clicks that I went back to 3 clicks. Now I have had 3 clicks for 3 days and the side effects seem to be cumulative. I feel like I have car sickness all the time. The dizziness, nausea and loss of balance are horrible. Since I have fallen 3 times in the last 4 months, broken 2 bones and suffered a concussion, I am afraid to function like this. I will go back to 2 clicks tonight. It was this website that showed me that I am not the only one who has trouble adjusting. If I can't tolerate Tymlos, I will have to take Evenity. If those side effects bother me, I would be out of commission for a month.