I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

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!

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

idlehands | @idlehands | May 2 8:30am

In reply to @jakey1953 "How much does the Tymlos cost each month?" + (show)

jakey1953 Tymlos' cost really depends on your insurance. If you're on Medicare with Part D coverage, you should be covered by the $2000 maximum, so the worst case is it would cost you $2000 the first month, then it - and all your [covered] meds - would be $0 for the rest of 2025. If you're not on Medicare, you really need to check the cost with your insurance co. because they all have different deductibles, copays, etc. The retail, undiscounted cost, if I understood my ins co correctly, was $2968. But that's misleading because your ins will not charge you that much. And if you have no insurance, Tymlos has an assistance program to provide it to you for very little. It's not as confusing as it sounds 😂: check with your insurance company...

mollylyn | @mollylyn | May 3 12:13am

In reply to @brookebloomingdale "I can only share my recent experience. Unfortunately, (praying this is a lesson to all!) I..." + (show)

@brookebloomingdale

I can only share my recent experience. Unfortunately, (praying this is a lesson to all!) I was not given a bone test prior to a rather complicated back surgery. I never healed and only got worse afterwards. The test should clearly have been done based on my risk factors. The end result was so bad that I now have "cages" that have migrated enough to make contact with arotic artery as well as another major vein. No new surgeon wants to risk a revision surgery, demanding that I take Forteo to build up bone enough to even think of a revsion . Feels like being held hostage. So I am now at week six with daily injections. I was so cocky and happy the first two weeka! No side effects. So happy because having vertebrae bone on bone and permanant nerve damage is enough pain! THEN week 3 comes! Every joint is now hurting and I am extremely unstable. Ankles and knees go out without notice and I have had several bad falls. There has been no change to meds except for Forteo. In addition, ALL of my lipid (Cholesterol etc) tests have completely turned upside down! In a matter of those three weeks! The pain keeps me up all night. Pain in places I have never had it, even with severe back issues. How the heck can the top of the foot feel like I was stepped on by an elephant? Shin pain worse than shin splints.
I have had no support medically wise currently, as I have been waiting five months for an ecndocrinologist appointment and with the needed revision surgery on hold I had to simply take it on my own. (After a 4 month insurance approval process), That is a very long way of telling you that, if the life saving surgery I so desperately need was not behing held over my head, there is no way I would have started this Forteo! FYI T score -3.8 and 62 years old. Make sure you find an empathetic physician that can review these side effects honestly with you. I wish you the very best. Again, don't want to freak you out, every body is different, you may well be able to tolerate. I have not

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I'm sorry you're going thru this. I too am in the same boat, had fusion of L5S1 with surgery in 2023 and haven't healed well. My surgery is not fusing and I now have osteoporosis. I need a revision surgery which I'm petrified of, but my surgeon will not do surgery until I'm on osteoporosis meds. I started envity in April, was and still am petrified of this drug. I had severe headache, pain, dizziness, and my jaw aches. I don't feel right and petried of going on with the shots. For decades I have taken calcium, d3, drink milk, exercise but still have osteoporosis at 66. My mom had severe osteoporosis and was on prolia for 2 years. I've read up on all of these meds and the side effects are horrible. And who knows what the long term side effects are. Dr wants me on eventity or reclast which is bad too. I'm looking into algaecal which is a plant calcium with d3,k2, strontium amd other minerals. Also read about Evista. How long does it take for eventity to build bone? Dr said atvleast 6 months, not sure if I can do 6 months, then you're on another med after for life to lock in. I'm a nervous wreck over this, has anyone tried another med or natural med ? Thank you.

gently | @gently | May 3 3:04am

mollylyn, Evenity adds bone the fastest. It adds the most bone in the first two months. Amgen literature says that Evenity starts to build bone in two weeks. I'm not fond of the drug. Some think that the discomfort with osteoporosis medications is a sign that they are healing. I think that the inflammatory responses are a sign that you shouldn't be taking the drug.
Some Evenity patients report that the negative side effects diminish with ongoing injections, some say it is worse around shot eight.
There may be a medical reason why you aren't offered Forteo or Tymlos. Forteo is prescribed to enhance fusion encourage integration with hardware. and to hasten fracture healing even in people without osteoporosis.
You might ask the Evenity/Reclast-doctor, if they would reconsider your choices. You should contact him (or his nurse) about your negative response to Evenity. I share your thoughts about both medications.
I'm on my third year of Forteo without any side effects. This drug seems more suited for your purposes.
Some do have side effects with Forteo. if you were to experience side effects with Forteo, you can stop taking the drug. It usually leaves the body within 4-24 hours, so you don't suffer long. And then you can try Tymlos.
It is my personal opinion that you can't recover the amt of bone lost by the time you have osteoporosis without the pharmaceuticals.
It is usually the loss of estrogen gives us osteoporosis.
I'm sorry you are in this situation, and hope you find good resolution.
Welcome to Connect.

tkdesign | @tkdesign | May 3 8:21am

I feel for you. I have severe osteoporosis in my 50s with no found cause yet...I have tried all the bone building drugs and had awful side effects. I couldn't make it past a month. I think my body just has extreme immune responses to drugs overall. I'm so scared of fractures but no idea what to do.

laujodrik | @laujodrik | May 3 1:10pm

In reply to @laujodrik "Thank you I appreciate your input. I’m walking into the doctor now for Dentist and I’ll..." + (show)

Thank goodness I do not have osteonecrosis. My biopsy showed my bone graft from my implant was not removed and it became infected. I’m so thankful for my dentist. The oral surgeon screwed up. I’ve been off the Prolia for 4 months and working my tail off especially my core. It’s been too long. I couldn’t go on Tymlos because of the rebound from Prolia. I had jaw surgery and they wouldn’t give me anything until my Osteocronosis was ruled out. The dentist said I can start Prolia in two weeks. I pray my back holds up and no compressions. I’m a bit nervous since it’s been so long. My osteoporosis was in the high 2’s and hoping it will hold.

rose1266 | @rose1266 | May 4 10:09am

I’m 58 and my doctor put me on Tymlos. I took it for 3-months and then switched to Forteo since insurance wouldn’t pay for it. Tymlos made me very lightheaded, dizzy and tired. I also vertigo for about 1-month on it. Forteo was a bit more tolerable. I did a bone density scan after 6 months as I wanted to come off. Please note that I was taking the meds while working with a trainer. My L1/L2 density went from 2..7/2.8 to 2.1/2.2. I’d suggest you try the Forteo but also try to hire a good personal trainer. Studies have been done to evidence lifting at your 1 rep max builds bone. I deadlift 135lbs now (and I weigh 115). I swear that lifting got me off Forteo sooner rather than later. Deadlifts work your entire posterior chain, particularly the muscles along your spine. Again, please make sure you hire a good personal trainer as you can get hurt without the proper form. I hope this helps. Good luck!!

mollylyn | @mollylyn | May 4 11:42am

In reply to @gently "mollylyn, Evenity adds bone the fastest. It adds the most bone in the first two months...." + (show)

Thank you so much for your honest and detailed reply. I was never offered Forteo, but will talk with my Dr (female). I will research Forteo. I like that if I have side effects on Forteo, can stop the drug and it leaves the body soon. All of the side effects of these meds are horrifying, but I need something to build bone. From my understanding, once on osteo meds, will always need to be on them.
I am a wreck over all this.
Thank you for being so kind and replying to my message. I will talk with my Dr about forteo.

laujodrik | @laujodrik | May 4 2:03pm

In reply to @mollylyn "Thank you so much for your honest and detailed reply. I was never offered Forteo, but..." + (show)

Forteo has a genetic prescription and I believe it’s much cheaper than Tymlos. After Tymlos or Forteo you can go on Prolia. I never had sent side effects. Unfortunately if you need dental work you must take a holiday. I haven’t slept well in weeks. It’s been too long and my back is starting to ache. I pray I’ll be ok. I’m older than a lot if you, 79 and can’t mentally or physically afford a compression. I have lost so much height. I had an accident and my L5 slipped forward. Physically I’m in pretty good shape except for back issues. Everyone seems to have different reactions to all these meds.

mollylyn | @mollylyn | May 4 6:45pm

Do you have insomnia and pain from a medication? I'm sorry you're going through this. It's all so difficult. I wish you the best.

laujodrik | @laujodrik | May 4 7:02pm

I’m having insomnia from stress these days. I was never a great sleeper since my menopause. I feel I’ve reached the end of this miserable journey and I pray my back holds out til I’m back on the Prolia. I’m starting to get an ache in my core which I never had. I could go on Forteo now but mostly everything gives me side effects and the Prolia didn’t except an achey back in the beginning. I have til May 20th and then I’m cleared. That’s 4-1/2 months off Prolia. I have a friend that stopped for a year and she was fine and then I read those horror stories and I’m petrified.