Connect
Tymlos side effects concern
I have been on Tymlos 8 weeks now. I am 61, 5'2, 106lbs. For the year prior to being prescribed, I explained to my Endocrinologist & my GP that I was having severe bone pain, everywhere. In April I asked for a Dex scan and my scores are very bad, Spine T -3.3, Total Hip -2.9, Femoral Neck -3.5. My Endocrinologist immediately started me on Tymlos because setting my bones the way they currently are would not be of any benefit. Ironically a week after my scan results I rolled over in bed and my 9th rib broke It is still healing and it happened April 27th (OUCH). After approval hoops with Medicare I began the drug. No side effects until 5-6 weeks: intense random pulsing bone pain at first in my lower leg and arm bones, now pretty much it can happen everywhere. I had read bone pain was a side effect, so wasn't too alarmed UNTIL today. I woke up with a hard lump on my finger that was not there yesterday. I contacted my Dr office and was told to stop the shots. Tomorrow my Dr has me doing labs and an Xray on the small mass. Has ANYONE developed under skin masses from TYMLOS? And if so, what was the outcome? I am reading on the manufacturers sight that this is a serious side effect, the worst being bone cancer.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Lanael,
I suspect Tymlos is causing hypercalcemia, which is causing pulsing bone pain. And the lump of calcium on your finger.
Some of us think that the 80mcg dose is a little too high for us lightweights. You might ask if you could try a reduced dose.
You might also be at risk for kidney stones at your current dose.
I hope you don't have to quit Tymlos because it is a really good drug. But Forteo might work for you.
Do you know if you were tested for secondary cause of osteoporosis. Hyperparathyroidism can complicate everything as can Paget's disease.
I'm not a medical person, and I wish I could place a bet that your lump is calcium and that your calcium levels are high.
Hey, tell us when the pulsing bone pain ceases. And what the endocrinologist says. And if your calcium lump goes away.
Best wishes.
-
Like -
Helpful -
Hug
11 Reactions@gently
Thank you for your nice message. My Dr did test my thyroid and for Multiple Myeloma, both negative. My suspicion is high levels of Calcium as well. I will do a follow ip post once I get labs and imaging back.
-
Like -
Helpful -
Hug
7 ReactionsThanks so much for this thread on the use of Tymlos. It has given me hope that this might be a better med choice to help with osteoporosis.
-
Like -
Helpful -
Hug
2 Reactions@lanael Hi Lanael, I second what @gently says about Tymlos. I just finished a course and am also a lightweight and had to drop my dose at around 8 months because the pain and weakness (and hypercalcemia) was so bad, but continued on an 60mcg dose (6 'clicks') for the rest of the time with really good bone marker labs and ultimately really great results. It is an amazing drug. If you can find a dose that you can live with and still see your body reacting via bone turnover markers (CTX and P1NP) then stick with it if you can. Having a body awash in calcium is not pleasant! Watch your Vit D intake and test for that too. I od'd myself on that I think and that threw off my calcium. It's a balancing act! Very best of luck to you!
-
Like -
Helpful -
Hug
5 Reactions@lanael @gently
What gently says makes so much sense. I hope once the cause is nailed down you may be able to stay on tymlos with a titrated dose. I wish the doctors would be more accepting of the lower dosage for all of us who are very small. My doc would not allow for a lower dosage and wanted to go straight to Prolia, which I was not comfortable with at all. I wish you the best and hope you get answers. Tymlos is such a great drug, it’s a shame when only the full dosage is the mandate from the prescribing health care provider. Hang in there!
-
Like -
Helpful -
Hug
3 Reactions@lanael Hope you find out soon what is causing this condition. So sorry you are going through this. When I started Tymlos, I had 5 or 6 of the symptoms, some of them extreme, like the diarrhea. Gradually, over the course of the four months I’ve been using it, They have started to fade away. Now I’m just left with a slight raise in heart rate after I inject myself. So I think it can get better for most people, but I also think the option of lowering the dose is a good one. Work with your doctor, and I wish you all the best.
-
Like -
Helpful -
Hug
1 Reaction