Any pre-injection tips for Tymlos?

@babbsjoy yay!

I have been on Tymlos for 3 weeks now. The box that came from CVS Specialty pharmacy contained the 30 day pen, the needle tips, a Sharps and alcohol wipes. My endocrinologist had a pen needle prescription sent to my regular pharmacy, too, so I was all set.

The needles are tiny and don't hurt. I inject at night, and it doesn't seem to be an issue. My stomach area might be a bit puffy, but my waistline changed when I fractured my spine. I have actually lost weight; about 4 pounds.

Maybe a small headache here and there, nothing earthshaking, and maybe a bit of balance being off, but I get cataract surgery in a week, and I suspect that might be part of the problem. I drink water like a fish. I would put up with a lot of side effects before I would go through a spinal fracture again. I sustained it snow-skiing, and PT told me that if I hadn't been in good shape already, it would've been much worse. I had no risk factors except for being blonde, slender, and vegetarian. It was a real slap in the face!

@bboon55
Thank you for sharing your experience, it is very encouraging! I now have all my supplies and am set to start. I will wait until tomorrow night, as I will be able to be home Wednesday and there will be someone around who can help a little if I do experience side effects.

This entire thing was such a surprise for me too! I never in a million years expected the dexa results I received, and would have paid for a do-over if the X-rays had not supported the results. Several people on here (like @windyshores) have shared how life changing fractures can be—and those accounts are what keeping me on the road for med help. Because it is like many say, you don’t feel any different, or fragile, until something happens! Thanks again for the support and I pray you continue to have an easy journey with Tymlos, and to strong healthy bones!

@maradeur
Thank you for that! I pray you have amazing results!

I just wrote on another thread, so I'll be brief here: I also went to evening injections. I walk in the morning and it made me fatigued for awhile. I keep zofran (anti nausea) pills in the house for me and the dog! So I used those for a couple weeks periodically. I had headaches for the first two months they disappeared. I stopped the 8 turns, took a month break and then started titrating up once a week. 2, 4, 6, 7, 8... each FIRST day only of the titrating I had side effects.. and then I was fine. By the end of titration I was pretty good. After 3 months I am getting bone density feedback SUPPORTING a dramatic response. Yes, my belly distended so I got the tiny ultrafine needles (why they don't give that to you first, I don't know!) and just do it in my legs. They did do studies on men and have results for belly distension. if they did it for women we probably WOULDN'T do the medicine! LOL (but its sad the way they don't test women... that is just a FACT. Read "The Invisible Woman" all about the lack of testing on women's bodies. My Endocrinologist said arrogantly "there's no reporting on belly distension." I told him he oughta read this forum!!!

Thank you so much for sharing this @loriesco! I am glad you have found the formula that works for you. I wanted to report that I had called Radius/TMYLOS to speak to one of their nurses about belly distention. The nurse said they have "no data about efficacy of drug for injection sites other than 2 inches from navel, as that is the site where the studies were conducted and what the FDA approved." In other words, not a helpful call. So it is wonderful to learn your 3 month DEXA was very remarkable (yay!) and you are injecting in your thighs. I wondered if you would share what size needles you are now using and also what your before treatment and 3 month DEXA scores were? Keep up the great bone strength!

hello @esb13 you misread my post a bit. My DEXA is next month. I had the P1NP (which I believe might be good - having doubled after 3 months) and my surgeon looked at my xrays saying the spine bones appeared denser after six month. My surgeon DID NOT recommend DEXA because one's bone quality varies thru the body. Mine said I was improved and out of osteopenia but when my cervical spine had surgery last summer my C5 bone "fell apart in their hands." It was "paper thin" and they had to remove it. HOWEVER - we are hoping with the DEXAs going forward while be a gauge as to the effectiveness of the medicine. (the endocrinologist wants me to do it).
The size needle is 32 x 4mm Ultra Nano Fine. It is a dream! Just be careful you can bend the needle when you put it on the pen if you are not gentle.
As far as calling Radius - they were lame. They want all this info from YOU but they offer you nothing. You can ask for a scientist liaison from my provider, which I did a month AFTER I requested, but its been three months and I see none has appeared!
I really had to PUSH the endocrinology team for all of the tests I am now getting (all because of THIS forum!). I also had to enlist the help of my PCM (she is great but unknowledgeable about this specialty)

Thank you! Good for you for advocating for what you need! That is shocking about your DEXA scores and then actual c5 surgical experience. I am sure that was a challenging experience and recovery. In Great Bones, KM talks about risk of being placed even slightly incorrectly on the table and that the DEXA will be totally incorrect. I wonder if that got reported (in spirit of an "educational moment" ) to the DEXA staff at your facility. I work in a teaching hospital and that is something we would want to pass along. Sounds like you are in good hands with your surgeon and team. Good luck next month with DEXA! I have mine too next month.

My needles are 31 gauge so one size larger and I will request the smaller needle if it will help with distention.

I am at UCSD a teaching hospital but I get my DEXA at Imaging Health Care for 12 years or more. They aren't that varied. The problem is that after 2014 there were no hips and after 2018 there was no lumbar! LOL but next month I'll be BACK at UC Health because they are the only ones doing the Trabuc... whatever its called (the bone density software analysis). I was freaked out to change but the scheduler informed me -- that on the NEW equipment they have now -- I don't have to be seen at the same location, same equipment, previous calibration, the same reader and all the rest! She said what they are using now is really precise and no worries! (plus they are the only ones with the software analysis!)
I don't think the needle will make an impact on the distension. Just stop injecting in your belly and see what happens. Mine went down after a couple weeks! Back to normal old lady waistline now. 😉 It was so horrible!

I hope you have absolutely no trouble and great results.

Getting a fracture is a rude way to find out. I went skiing and turned into "a little old lady."