Tymlos body fat

@gowalking Originally, I had the dizziness, nausea, and headache immediately afterward each injection, starting with my first injection at full dose on March 20, 2026. I also had severe bone pain in my lower body (including feet and ankles at night), along with crazy-strong nerve sensations of something clawing/scratching up the front of my shins. Walking became more and more challenging, due to lower body bone pain. Increased lower body swelling, sweating (esp at gym and at night), significant fatigue (afternoon), and sleep disturbances didn't help to tolerate the other issues. The stomach distention was insane and still can be. Majority of the above are much improved with the lower dose. Sadly, my health provider has pushed back strongly on my reduced dose, as it is "not FDA-approved" and will not offer any recs re: dosing, etc. She was terribly reluctant to allow me to continue, due to no guidance from Radius. It took strong point and convincing to get her to allow me, RELUCTANTLY, to continue...with refills only being provided one month at a time, which is stressful. I cannot imagine what Reclast will do to me, when the time comes. She mentioned it woukd likely be a half-dose and I asked about the extra IV hydration, longer infusion time, and Tylenol.

After the first 24 injections, I started developing half-dollar-sized angry welts at the injection sites (took about 24 hrs to fully raise and about 5-8 days too subside. I'm still dealing with the welts, but they seem to be less angry the past week, with an occassional flare ot two. Can't really hide those from my provider. (As much as I tried to titrate back up to full dose by 10 mcg every 10 days, I was stopped in my tracks at 60 mcg...quickly dropped back to 50 mcg, and then to 40 mcg. I have been on half-dose now since May 16th.

My last P1NP:CTX ratio was good at 181 (anabolic is believed to be 150+). At that time, I had been on full-dose for about 3 of those 6 weeks. I retest again in early July. I sure hope my ratio manages to stay strong.

@denisseagirt Your doc should weigh-in on that question, based on your pre-treatmebt levels and how well you are tolerating the injections. I believe most doctors probably check the calcium levels within one to three months of starting??? Mine were checked more often, due to ongoing side effects.

@cathyf31

My goodness...that is a lot of side effects! I was fortunate to have none other than the first injection being painful for a few minutes and the weight gain.

There are so many treatments available, is there something else you can try?

I had success with the TYMLOS, went to Reclast two weeks after my last TYMLOS injection and then to surgery two weeks after that. So far, so good.

I will have a DEXA SCAN in September and am keeping my fingers crossed!

Regarding your doctor being hesitant to approve a half dose, I have noticed several folks on this forum do that.

I also, was not able to order more than a one month supply at a time. I'm not sure if that was due to the expense, or a requirement of Medicare or my insurance.

I hope you can get past all the side effects or find a treatment that your body can tolerate better.

Keep me posted. Hoping something will work for you.

@gowalking Thank you. Tymlos is my last shot (literally & figuratively). If I fail this, Reclast is the only next step, due to my history and previously failed treatments. (Regarding the refills, I only meant that my health provider was initially sending in 3 refills at a time, but now only 1 at a time, based on my feedback on how I'm tolerating the side effects at the time of the needed refill). Best wishes to you, as well!!

@cathyf31

Well, if it gives you any hope....I followed TYMLOS with Reclast with no issues. It's only been two months since I did it, but no problems. I did the 15 minute IV drip. Took Tylenol and drank tons of water the day before, the day of and the day after.

Geez....I hope you find one that works for you.
Osteoporosis is a pain in the neck, back, butt, and everywhere. We need to advocate for more research. STOP CUTTING RESEARCH FUNDING!!!!

@gowalking I’m afraid of the Reclast that follows the Tymlos. It seems people that suffer the extreme side effects already have an autoimmune disease or arthritis in different places like me.
Your story is encouraging. You don’t have autoimmune issues, correct?
Be well.

@lightlifts

No, thank goodness, I do not have autoimmune issues. I have enough other issues.

@lightlifts

Is Reclast your only option after TYMLOS?

Or Prolia. Prolia is for life. I could never get off it. Because of my stomach I can’t do oral biophosphates.
Now that I’m thinking of it I wonder if they have you do something after you stop Reclast so that your bones don’t crumble as they’re supposed to do after you stop Prolia without a backup plan…ugh

I think my doctor said they recommend three yearly infusions of Reclast, followed by a drug holiday. I guess they may do Dexascan follow up and figure it out from there. I’ve been on Tymlos for two months now, and wonder if the plan will remain the same after two years go by.