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Tymlos side effects I've encountered

Osteoporosis & Bone Health | Last Active: Dec 3 9:58am | Replies (289)

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@gwpitt

I am a physician on tymlos for 6 months. Three months ago, I began having back, knee, shin and ankle pain. Prior to that time, I was extremely active and these symptoms have reduced my activities by about 50%. I have seen a podiatrist, orthopedic surgeon, neurologist, internist and rheumatologist. I do have mild L4 foraminal stenosis and knee chondromalacia, but these pains are more frequent, severe and extensive than the orthopedic changes.

I am considering stopping tymlos for 1 month to see if it is the cause of these symptoms. I would be interested in hearing if others have experienced something similar to this.

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Replies to "I am a physician on tymlos for 6 months. Three months ago, I began having back,..."

@gwpitt is it possible these are "growing pains." That was suggested to me. For me the pain was worse in those first 6 months when the growth was greatest.

Rather than stop, I would reduce the dose by one or two clicks, meaning over time I mostly did 6 or 7 clicks of the pen. I was amazed how much worse side effects were at the full 8 clicks so I did that only rarely. I still had 20% gain in my spine. Maybe you could try going down rather than stoppint?

I have been on Tymlos for seven weeks now. I have started to experience lower back pain and pain in my left hip (I have AVN on that hip). I started on a very low dose (3 clicks) and added a click every three days. At 6 clicks, I started to experience some side effects. I had a few terrible days with nausea, leg cramps, general malaise, and even "hot flashes". At 7, it was a disaster. I had to skip a day and go down to 5 for a few days. I am back at 6 clicks. The first days were not good: nausea, leg cramps, back and hip pain, and, again, the "hot flashes". But I stuck to my treatment, and the effects have gradually subsided. Only mild nausea and feeling a bit tired, especially in the late afternoon. I plan to hang on at 6 a little bit more to see if my body gets used to it completely, and I'll try 7 clicks one more time. Not really looking forward to trying the full 80 mcg. though.

I have had a very similar experience. After starting Tymlos in May at the full dose, I could barely walk. After finding this forum, I reduced my dose, but even at two clicks, my back, shin, ankle, and toe pain is sometimes debilitating. At four clicks, the nausea and vomiting are overwhelming. I was extremely fit, and now I feel like I should be wheelchair bound.

Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in my knees and ankles, then today, throughout my body. I am very active, but frankly, today, felt very depressed and so tired. I know you posted a year ago, but I'm curious to know if you continued Tymlos or switched to another drug. I've been on Forteo, which wasn't this bad, Prolia, which caused a terrible jaw infection, Atelvia, which seemed to work, but I have Barrett's esophagus, so they wanted me to get off that, Fosamax, which I couldn't tolerate, and now this. I'm afraid of Evenity, frankly. Any insight would be very much appreciated. Thank you!

gwpitt,
high blood calcium can cause joint, bone and low back pain. PTH can cause sustained high blood calcium in some patients.
These pains were signaled in the clinicals.
The other known advantage of PTH therapy is the increase in chondrocytes in the joints.
You are at six months. That is when fewer patients quit Tymlos because of bone pain. It is also a great month to take a month off. A little holiday will lower the osteoclasts which are, usually at this point, beginning to close the distance in numbers between osteoclasts and osteoblasts.
I often think the 80mcg dose is a little high for most of us. And I endorse the windyshores method.
If you are having bone markers one before quitting and one a month after resumption would be rewarding for you and interesting for me.
I'll bet though that you'll notice the difference after one day. And I hope you keep us abreast of your progress.
Forteo is a lower dose, though. With Forteo I had a month off and was greatly pleased by the numbers and think the anabolic window could be expanded in the very way you are thinking of proceeding.