I am afraid of trying Tymlos and other drugs due to side effects
How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?
I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.
My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.
Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!
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Glad to hear about your response to Tymlos. I’ve been off Prolia for almost 4 months and now being tested to Osteonecrosis. I’ll find out tomorrow. I had to wait to start Tymlos not to have a rebound. My rheumatologist feels Prolia should be mostly out of my system. Every day I wake up expecting to feel a fracture somewhere. I’m petrified of the meds and petrified to be on nothing. I seem to get side effects from most meds. I’ve never had any cancer treatments or dental work during Prolia and yet my mouth started to bother me and now I needed surgery for what they suspect is Osteonecrosis. My bone density was not terrible just in the osteoporosis level and I’m so sorry they convinced me to go on Prolia. My friends have been on it for years with no reaction. If I have osteonecrosis I can take 2 years of Tymlos and that’s it. No other meds if I have this condition. I’m 79 and very active though it seems not to help. I’ve bern working out and maybe that’s why I have postponed the inevitable so far. I hear 4 months is a long time to be off Prolia. My last shot was June. I guess I can’t worry about 2 years from now. I very healthy in all other ways. Between a rock and a hard place.
laujodrik, you're in a tough position. I have a couple of suggestions just to think about. Prolia and Tymlos work well together. Better than either alone. If you started Tymlos it would have more positive effect and protect you as well. Tymlos is also the drug that is given to treat osteonecrosis. So you'd be in good stead. Tymlos is not the best medication to counteract rebound. You might ask your prescribing physician to secure a free pen from the Radius Health representative and begin the approval process from your insurance.
If you have side effects from Tymlos, you'll take something else. It moves through your system in a 24 hour period. You wouldn't suffer long. Fingers crossed that you don't have osteonecrosis. Post us your results.
I am like you tho haven't even started/ Dr wanted me on Evenity in 2020, when 2 of 3 scores still in osteopenia. That has even MORE side effects. Plus an oral surgeon told me I had had a lot of good dental work but that meant I was probably going to get dental work in my future. My dentist said do the old drugs like fosomax so at least I can go off if I need work, whereas the others stay in your body.
one thing that might make you feel better - my mom inadvertently went off Prolia cold turkey, her doc at the time didn't
like the red tape w Obama care and went into research without telling her she better get another dr to follow up after Prolia She is 97 broke hip 3 months ago because of a fall I will feel i should have prevented forever She also broke her back in 2019 , AGAIN a fall due to something else. Had she not fallen she would have been fine.
I did start trying to be better about calcium and lifted more per the LIFTMOR study in Australia My scores were a little worse last month - again she said start Evenity - but I didn't go all out. I didn't quit caffeine or sugar or stress and I only worked up to 20 pounds You have to do really heavy . Google ONERO exercise program. There are some P Ts apparently who do it here . And it looks like you may be able to do it online (it is from Queensland AUstrailia) I also haven't tried the vibration plate espoused by Margaret Martin Finally, my doctor was totally dismissive of this but Google Local Osteo Enhancement Procedure They can put something in your hip that builds your bone. To me again better than the drugs. BUt I am still scared of breaking something before I resolve this
I am confused. I looked up Radius Health and that is Tymlos. I was already approved for Tymlos from my insurance company. It’s expensive, but with the $2,000.00 cap, which may be just Medicare I should be ok. You’re saying Prolia works well with Tymlos. I was told by my rheumatologist if I take Tymlos to close to being off Prolia I can get a rebound and be in worse shape. That’s one of the reasons why I waited 4 months. What else can I take? Forteo is the only other drug if I have osteocronosis. I’m praying I don’t. If that’s the case you can go on Tymlos until my surgery is healed and then Prolia. I’m not sure why the reverse is bad. Thanks for your input.
First of all the first thing all bone density drs put you on is fosomax or actonel. They never start with such an aggressive drug unless your numbers are very high. I didn’t start anything until I had osteoporosis. I started with Actonol for 5 years and was fine for many years. Four years ago I was just over the line so I decided to go on Prolia - big mistake. I didn’t do any dental work and I’m still being tested. I’m praying it’s something else. I’m very active. I work out with a Dr of physical therapy twice a week. I have leg weights 2 pounds each and he has me walking around with them. I do a number of exercises with heavy weights as well. I pray it will work. I’d love to stay off everything. I’m also scared reading some of these articles of the women getting spinal fractures. I have a very good rheumatologist and I’m seeing her tomorrow. Later today I’ll have my results from the biopsy.
The link should direct you to patient help. If your income is low enough, even if you own property or goods, you may qualifly for the $80 pen. In that case you wouldn't use your medicare D plan.
Tymlos increases the cells that build bone. But it can't remodel bone with too many of the cells that resorb bone. Prolia releases a mass of those cells (osteoclasts) when you stop taking Prolia.
It isn't the Tymlos that makes Prolia dangerous when you stop. When you stop the only drug thought capable of handling the mass of osteoclasts is Reclast. It is the absence of a follow up antiresorptive drug that makes your rheumatologist worry about rebound.
If you don't have osteonecrosis you might continue Prolia. If you continue Prolia, Tymlos plus Prolia would increase your bone mineral density more than Prolia alone.
Prolia can be good, if you can stay on it. Another commentor has a femur fracture from Prolia on one side and a deeply weakened femur on the other side. None of the doctors have an answer for this dilemma. I'm adding my prayers that you don't have osteonecrosis. And that you can get off Prolia with two years of Reclast, so that you can get safely on Tymlos
wishing you luck
Thank you I appreciate your input. I’m walking into the doctor now for Dentist and I’ll have my answers. Everyone seems to have a different suggestion. Unfortunately, I fall right in the middle of too, which to get the $80 pen and to poor to afford the meds. I’ll do what I have to do in order to get well.
You know I remember that visit with her - it was Mar of 2020, Covid had barely started Not even sure we were wearing masks
And my scores were not so bad I think the hip neck thing may have been 2.4
She goes "I think Evenity would be a lovely drug for you." I looked at the side effects when I got home and lovely sure didn't seem like the right adjective to me. BUt in her defense, she knew I hated not being able to do sports One of her pitches was "If you take Evenity you can ski again."
She never mentioned the older ones. It thought that a little strange but was dreading Fosamax and when she said "lovely" before i looked at side effects it sounded good.
There are two places in the States that do the Austrilian Onero program, one in Manhasset (I could live in NYC and commute) and one in CA (a huge move) BUt I have to research if there's someone closer.