1. < Osteoporosis & Bone Health

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.

njhornung | @normahorn | 1 day ago
In reply to @lhankins "@gravity3 My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I..." + (show)
@lhankins

@gravity3
My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I should have not allowed emotions into my response to a question. I appreciate all of the great information on this forum. Again, apologies to all.

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You definitely are allowed to express your fears and concerns here. That is what a support group is for. However, it is wise to not let fear get out of hand.

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gravity3 | @gravity3 | 1 day ago
In reply to @lhankins "@gravity3 My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I..." + (show)
@lhankins

@gravity3
My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I should have not allowed emotions into my response to a question. I appreciate all of the great information on this forum. Again, apologies to all.

Jump to this post

I probably did make myself clear. I don't think anyone should suppress their feelings positive or "negative". I was simply referring to how any of us could get stuck trying to put all of the information together in order to make a decision about meds. I have found it exhausting in ever possible way. So many of us are struggling to find the path that we hope is best.

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lhankins | @lhankins | 1 day ago

@gravity3
Exhausting indeed. As a single issue osteoporosis is challenging; when combined with other significant health issues it becomes an enormous jigsaw puzzle with little room for mistakes. I appreciate all of the shared information here and will take the time to make the best sense of it all. First and foremost I do believe I need to find a new medical team.

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susanjohnston | @susanjohnston | 1 day ago
In reply to @oopsiedaisy "I was on Tymlos for 4.5 months and I did experience side effects but they did..." + (show)
@oopsiedaisy

I was on Tymlos for 4.5 months and I did experience side effects but they did not impact my quality of life greatly. They included elevated heart rate that lasted about 30 minutes, some constipation (which I believe may have also been due to my not drinking enough water throughout the day), and sporadic pain in my extremities which some people attribute to "bone pain". The pains felt like electric "zaps" that came and went very quickly. They were worse some days than others and many days I did not feel them at all.

I was switched to Forteo (generic) due to insurance coverage issues and have not experienced the same side effects at all. I did switch my injection time to the morning from the evening and perhaps that made a difference.

I will be on it for another 18 months to 2 years so will not know how much improvement there is until then. I am unsure of what comes after as my doctor didn't bother to discuss that with me. I had no idea I might need to take something after or that I may need to be on medication for a good portion (or most) of the rest of my life. I plan to have a follow up conversation with my current doctor next month and will also see an endocrinologist for a second opinion in April.

I had a T8 compression fracture last year after being on Fosamax for five years. I had an improvement in my DEXA after two years on Fosamax and it appeared to remain stable for another 3 years but then I had the fracture which was quite unexpected as I had a lumbar T-score in the osteopenia range. Of course, I have no idea what shape my thoracic spine was in. I had an accident in 2017 where I broke a transverse process on T1 and I wonder if the impact somehow contributed to the later fracture. I had a lot of pain in the same area as the fracture but the MRI at the time of the accident didn't show any issues.

I will do whatever it takes to avoid another compression fracture. The pain was terrible and the rehab from the fracture took months as it really affected my back muscles from nerve root compression. It quite honestly messed up my entire year in so many ways.

At any rate, I only have experience with three medications: Fosamax, Tymlos, and Forteo. I am sure others can perhaps chime in with their experiences.

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This is so helpful. Thank you.

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susanjohnston | @susanjohnston | 1 day ago
In reply to @windyshores "@laoaca70 and @susanjohnston I miss Tymlos! I have several spinal fractures and felt safe on it...." + (show)
@windyshores

@laoaca70 and @susanjohnston I miss Tymlos! I have several spinal fractures and felt safe on it. Doing the shots every day really is no big deal. It just becomes routine. The needle is small.

One advantage to Tymlos is that the dosing is adjustable with clicks on the pen. Full dose is 8 clicks. I had trouble with even a half dose so went down to 1/4 dose and moved up slowly. I landed at 7/8 dose long term and by 18 months had a 19+% gain in spine, 9% gain in hip, going from severe osteoporosis in spine to borderline.

I switched to morning and that eliminated headaches. I also found that moving around rather than resting seemed to help. I have low blood pressure so perhaps movement raised it. At first I had a blood pressure cuff and if my bp was lowish before the shot I hydrated and ate something salty. After while I found that was not necessary.

I have occasional atrial fibrillation and was afriad the rise in heart rate might be a trigger but I didn't have a single episode the entire two years I was on it.

I did 4 months of Evenity afterwards though noone else in my doctor's practice did Evenity after Tymlos. Now I am on Reclast. Hoping to do more of an anabolic. Forteo can now be taken more than two years for certain patients. I didn't do well with Forteo perhaps because it is not adjustable.

All of these meds have some side effects. But for me, fractures have been 1,000 times worse. With Tymlos I lived pretty normally and had a good quality of life. But yeah, some fatigue at times. No fractures since 2021.

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This is so helpful. Thank you!

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mary1951 | @mary1951 | 17 hours ago
In reply to @lhankins "@gravity3 My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I..." + (show)
@lhankins

@gravity3
My apologies to the forum for sharing ‘negative thoughts’, that was not my intent. I should have not allowed emotions into my response to a question. I appreciate all of the great information on this forum. Again, apologies to all.

Jump to this post

@ Hankins, You do not need to apologize! I personally am terrified of medications because they all are unnatural to the way our bodies should function if normal!

I have never had any success with drugs. For example, the drug (pantaprozole) that was supposed to treat LPR (a more serious form of GERD), and in fact taking proton pump inhibitors for a while is what I believe sent my Dexa scores into a downward cycle. Drugs for nerve pain like Gabapentin, did nothing for my nerve pain- only made me feel like a zombie. Same with any antidepressant drugs and I've tried nearly a dozen of them. Was prescribed Xanax years ago for anxiety, only to find out that a psychologist recently told me they predispose you to Alzheimer's disease if taken for a long period, which my mother had! Would never have started had I known that.

You assumed your doctor was taking the precautions so that you would not end up with high hypercalcemia, yet here you are. I would be upset, too. And I would never take Prolix, either.

Doctors are great at prescribing medicine. It is up to us to do the research to make sure that we are not going to run into problems down the road from taking them. I picked up my first prescription for Tymlos yesterday. Didn't have the heart to take it, after reading what Susan wrote about needing to go on something else afterwards. I will never, ever take an anti-resorptive drug because I have had dental problems all my life. That leaves only Forteo, and so that leaves me at risk to develop possible bone cancer since I've had radiation. Not a wonderful situation to be in.

So your fears about medication are not unfounded and you are not alone. Check out the reviews about these medications on Drugs. com. They are not good! If we cannot come on this site and voice our concerns , then we have no voice for them, which is sad.

In the end we have to make our own decisions, and this group on this site is very supportive. I would not even consider trying Tymlos if it were not for the positive comments and support on this site. Good luck with your decision!

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