sharp sudden bone pain

Posted by zygote @zygote, 6 days ago

I'm on pen 9 of tymlos. I have been having sharp unexpected pain in my legs/knee esp. when walking. My knees have been aching since pen8. I'm scared that this pain that comes on suddenly will cause me to fall. Last night I didn't take the injection . I know my knees feel better this am. Anybody else have this happen to you?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

zygote, invalid answer because I haven't taken Tymlos, but the safety instructions advice is to contact your physician with joint or bone pain. I'd stop taking the medication briefly, then resume it until I had the pain again--repeating this process. I have the suspicion that the dose is too high for most of us. But I wouldn't like to see you lose the benefit of Tymlos-- a truly fine medication. Your physician might agree.

REPLY

Thanks for your thoughtful reply. My P1NP was 715, which is concerning- and I've been considering lowering the dose to 50mcg for a bit of time due to the current side effects. (I'm on 70mcg) My labs are scheduled for mid May which will include repeat P1NP and CTX ( CTX not previously done) and Dexascan.

REPLY
@zygote

Thanks for your thoughtful reply. My P1NP was 715, which is concerning- and I've been considering lowering the dose to 50mcg for a bit of time due to the current side effects. (I'm on 70mcg) My labs are scheduled for mid May which will include repeat P1NP and CTX ( CTX not previously done) and Dexascan.

Jump to this post

Hi @zygote

I didn't have pain in my knees, but I did have very sharp pain in my ankles - they felt like they were broken. The pains came on suddenly and lasted for a minute or two, and as I recall, only when I was putting downward pressure on them.

Wish you the best! Cheers!

REPLY

I had similar pains on Tymlos but sooner in my treatment plan - starting in month 3. They felt like a sharp electric jolt that ran down the length of my shins, arms, and fingers. I did not have any joint pain, though.

I was switched to teraparatide (generic Forteo) in January and had severe joint pain by mid-February. This was in both knees, elbows, shoulders, fingers, etc. I quit for a couple of weeks and they went away.

I since learned here that hydration is important with this class of medications. I was not great about that before but have begun ensuring that I drink at least 32 ounces daily of water.

I've been back on the teraparatide for a couple of weeks and have not had joint pain but I have had similar pain in my legs as when I was on Tymlos. They aren't too bad.

I would rather not be taking any medication at all but I would like to avoid another fracture so I will continue on with the medication.

It's always good to check with your doctor. I chose not to because I will be switching to an endocrinologist in April and will ask then.

REPLY

I was on a half dose of Tymlos for 10 months and had no side effects on that dose. I have now been on Forteo for 4 months. Now I have joint pain and vein pain. The insert indicated that pain is a side effect of Forteo. I think that I already had arthritis, but the medication makes the pain worse. The vein pain is from expansion of the blood vessels from these medications.

REPLY

drsuefowler,
caffeine is vasoconstrictive as is salt.
It seems as if the vasodilation is longer for you than the usual four hours after injection.
I trust your rheumatologist and am happy she will let you return to Tymlos. I suspect that at 40mcg of Tymlos you may be gaining as with 20mcg of Forteo.
Some few do experience sustained elevations of calcium which might (or might not) be affecting your sustained negative response. I suspect your rheumatologist is watching both kidney and parathyroid function.
You could use Forteo every other day. Clinical trials have shown equal advantage only it takes twice as long.
In my opinion, you shouldn't be tolerating the side effect of Forteo, especially since Tymlos at half is without adverse affect.
Aside from that, I don't think anyone finds increased density in the hip at six months with either of these meds. I had bone loss in the hip, which I attribute to initial mechanisms leading to increase in strength.
Some think that the increased joint pain is an indication that the medication is working. Forteo and Tymlos do increase cartilage chondrocytes in the joints. But the increased pain in the joint says "inflammation" to me.

REPLY

Thanks @gently. Maybe I should try a day off from Forteo and see if I have less pain. I was excited at first that I could actually survive a whole dose of Forteo, since I usually can't tolerate a whole dose of any medication. I have blood work and a REMS scheduled next month. If I have no improvement, I may go back on 40 mcg Tymlos. Yes, I have inflammation from arthritis and healed fractures. Is the increased pain from Forteo or just getting older? I am 74.

REPLY

drsuefowler, I suspect the increased pain is caused by Forteo.
I'd take a day or even three off the drug and then if the pain went away, I'd stay off. Your good rheumatologist could renew Tymlos without another consultation.
I'm right behind you at 73.9. USC gives you full credit for time.

REPLY
Please sign in or register to post a reply.