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

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.

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.

@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.

This is so helpful. Thank you.

This is so helpful. Thank you!

The fear is overcome by getting information. I am very drug sensitive so I had problems. I also had problems because I needed, my bones needed the medication. As I have found over a lifetime I am 68 to an active when things happen to my body, I have a negative reaction to medication when my body needs the medication. The more I actually need it the more of a reaction I have. The reason being is your body is mounting a reaction to the need. Therefore, I think you must in your mind decide that your bones are important enough and your health is important enough to go on this journey. This group was super important when I started my TYMLOS journey! My doctors and team did not inform me of what was about to happen. I learned on my own. That’s why this group is very important because I found comfort in knowing I wasn’t alone. Get tested before you start the medication’s. That way in a few months you can get tested again and you can start seeing the results.. I started seeing the results at my orthopedic surgeon between two different x-rays over six months the second one was more opaque, dense. That was enough to me. I had been in a surgery where my bones literally fell apart, and every one was shocked because my DEXA scans of 20 years implied that I was only in osteopenia. The good news is exactly what my doctors implied which was that the side effects only last for two months on the TYMLOS. My doctor’s nurse said it’s like magic her patients report. She only told me that after I was miserable. However, it was true at two months. I didn’t even know I was taking the medication anymore. My suggestion is to wait till you can clear your schedule so you can deal with any fatigue, headaches, nausea, let the medicine might bring about. And that you also have a good support system to get you through that first two months.
I was able to have necessary dental work done on the TYMLOS. One thing I had to do was start over and titrate up, which means that you start at two clicks and every week you move up a clicker too until you get to the eight clicks. I did that like a champ. Also the belly injections made my belly plump out, so I just kept my injections in the leg and tried a few under my arms. At this point, I’m coming upon my first year and none of it matters anymore. I went from Injecting in the morning to injecting in the evening so if I’m tired, I don’t even notice. The scans and tests after three months told me everything I need to know six months might be the standard. I forget then there is the RECLAST infusion. I had one injection before starting the TYMLOS. No one prepared me for that one either! I had two problems that one was started too close to a huge surgery, which I would never do again, and they didn’t prepare me by having me dose with NSA IDs before coming in for the infusion. 10% of people have severe reactions and I was one of those. But again that reaction is due to needing the medicine to do its work it ramps up your immune system and I felt like crap for about three days. After reading up on the rec class a few months after I had it, I learned that if you have a really bad response, you can expect that for the first time and then the other infusions you sail through. So after I finish the TYMLOS with much trepidation and fear I will go back WILLGOBACK and finish two or three rounds of the RECLAST. And then I think I’m done for life is what the doctor said. here’s the deal, my friend. You can always stop. You can always stop. Since you can always stop you might as well try. There were a couple times I considered stopping, but I said just a little more… Just try again… Just find some support… just hang with it because I’m seeing the results… Just call the doctor… Just see the nurse… Just come back here ask questions. And now I’m on my first year and a half of this journey with major results! I hope you do it because you can always stop.

@ 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!

I am on my second week of Tymlos with no ill effects yet.
My endo thought Tymlos would be best for me but it scared me. The administration, side effects and follow up with other drugs and I am 65. I would like to think I have many years ahead of me.
Just before my follow up appointment and beginning Tymlos I fractured my L3.
I wanted to believe that diet and exercise would be enough but my painful experience has turned my thinking around. Tymlos is now my friend, I am grateful for it and am hopeful for a supportive outcome.
This group and the information I have found here has been a huge factor in turning my thinking around to an accepting, realistic one.
I don’t even feel afraid of side effects. If I could cope with life through this recent fracture I can handle taking medication and finding a silver lining.

I am so happy to read your post. I may have to start Tymlos and I’ve been petrified with some of the posts. I’m on Prolia now and may have to come off. I know it’s not as successful once you’ve been on Prolia. Unfortunately, I may not have a choice. It’s Tymlos or fractures. The cost also concerns me. I have been approved by my plan. I’m not sure of the deductible. When I get my final diagnosis I’ll call and see.

Minor side effects and improved bone density especially in my spine. I too am active and healthy at 66. I do not want to stay on this drug for two years… it’s been a year but endo wants two, even though she says there will be very little improvement. Deciding now what to do.