Struggling with Tymlos medicine

@bharris202 You're the best!! So glad we have a sisterhood here to help navigate these injectable medications. G-d bless this community:)

@gently Thank you so much for the info & advice. Super helpful. Now I just have to figure out how to get Tymlos covered on Medicare Part B.

Hi I’m about to finish my 2 year course of Tymlos and going for my Dexa scan in 1 month. I had issues of muscle spasms when I first started but thankfully they stopped. I found that doing the injection in the morning worked best for me and really trying to do the shot at the same time every day helped. I also would make sure I was always well hydrated. I’m 66 years old and do the gym 3 times a week have no other health issues and no fractures. I definitely got that swollen abdomen that the drs fail to mention as a side effect. Hoping it will lessen now that I stopped. I had osteoporosis but at my last scan 2 of my numbers are now in Osteopenia range. I’m hoping the next scan will show that my last number is also in Osteopenia range. I tolerated Tymlos very well but there were some days I would feel fatigued and not great but I feel like my body adjusted well to Tymlos. I never lowered my dose because I didn’t know that was an option. I am now struggling to decide if I should go on Fosomax to keep my gains but I really don’t want to. My Dr. keeps pushing Prolia but I am not comfortable using that drug. I’m looking into other options like HRT therapy. Has anyone out there kept their gains after Tymlos using natural methods? Good luck to you with Tymlos!

@margaretk You HAVE to follow up with a biphosphonate, and you need to do so quickly (i.e. you can't wait months.) There is no alternative. If you don't, you will lose the gains you made.

That is the nature of these anabolic medications. They artificially change the bone remodeling process to be in your favor, but if you don't follow up to lock in the gains, the process reverses itself and you will lose bone.

Please don't make this critical mistake.

@windyshores I'm starting Tymlos next week & would appreciate any tips on starting dosage recommendations as well as injection tips. I'm started watching videos & reading materials, which has made me more anxious not less. Just very overwhelmed. I was on Evenity for 11 months with no issues with side effects. Self injection scares me. Thanks, in advance.

Very helpful info.

@lisaberkowitz I was nervous about self-injecting, too - and I'm a guy who tells the doctor "sure, do whatever test you want to do." Once I tried it, I saw that there was nothing to worry about. First, the needle is really, really short and very thin. It's nothing like the ones they use to draw blood or to give you a shot. Second, because it's so small, it doesn't hurt. I know, you think that as soon as the needle touches you, it's going to hurt, but that's not the case. It goes into the fatty tissue right under your skin. It doesn't hit muscle.

Occasionally it might pinch a little, but then you just pick a different spot. A pinch is the worst thing you will feel, and that usually won't happen.

Dosage: many people find that the full dose of 80 is too much. They compensate by not clicking the pen all the way to 80. Each click equals ten, so, for example, four clicks is a half-dose. Maybe they start with three or four, and if that works well, they move up one click next time. Some people manage to work their way up to 80, but others find that five or six clicks is all they can tolerate. You can certainly start low, with three clicks, and see how it goes.

Trust me, after a few times, it will be like brushing your teeth. You can do it, I promise.

@lisaberkowitz
Sadly, windyshores has retired, but has left us with the wealth of her experience.
Start as low as you want 1 or 2 clicks and wait a day or so to see if there is negative effect, then move up a click or two and wait again. This gives your body a chance to adjust.
Some are dizzy after the injection as calcium is released into the bloodstream. It expands the blood vessels making your heart beat faster.
You can mitigate the effect by starting out hydrated, giving more volume to the blood to help fill the dilated vessels. Caffeine and salt constrict the blood vessels. Tea and an olive maybe.
As the vessels expand your blood pressure will drop, which you may not notice.
Some take the full 8mcgs and never notice anything. Some few are allergic to phenol the preservative in Tymlos.
The needle is so, so tiny. You can't injure yourself with it and you might not even feel it.
Some people pinch their skin first. If you pinch and let go before injection you are less likely to have a tiny bruise. You can inject in your stomach or your thigh with the same absorption rate. I like the thigh though I'm on the other pth drug, Forteo.
Nice sequence Evenity to Tymlos.

Thanks so much for the info & advice. I think I'll start with 2 clicks per day for the first 3 days, then increase gradually. I suffer from slight arrhythmia with a heart murmur, so I think it pays to take thinks slow. Thanks again. Lisa

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lisaberkowitz, many people are told to take more calcium and vitamin D3 on Tymlos, but it is best to watch intake and not exceed normal values for each. Hypercalcemia can result in irregular heart beat. You might ask about adding magnesium to your supplements because it helps return calcium to the bone, and helps prevent afib.
Tymlos full dose can add 15 beats per minute to your regular heartbeat and you may feel the beat, Tymlos isn't known to cause afib.
You are going to be on the best medicine available for osteoporosis.