1. < Osteoporosis & Bone Health

TYMLOS FEEDBACK

Posted by harryboy7 @harryboy7, May 27 9:17am

I am 70, and have severe osteoporosis, I have had several fractures over the years. Recently I developed a t8 mild compression fracture. All my life I was super active, biking, hiking, swimming, skiing, I am vegetarian. Have lived a healthy life style. In my 60's my body started breaking down. I am so depressed.
My Endocrinologist wants me to go on meds. I have severe osteoporosis (had a recent Dexascan). Will medication even make a difference at this stage of my life ? Will bone classes about Osteoporosis even make a difference?The more activity I do, I get stresses fractures.

Tylmlos is the med my doctor wants me to start. If I can't afford that, the second choice is Reclast. So afraid of side effects. Tylmos builds bone. The thought of injections are daunting.

I haven't seen much feedback from the discussions regarding Tymlos. Would love your thoughts. Is it worth going on a medication at this point?

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

fili123 | @fili123 | May 30 1:03am
In reply to @seh801 "@fili123 I just finished 18 months of Tymlos (and had a Reclast infusion yesterday). I was..." + (show)
@seh801

@fili123 I just finished 18 months of Tymlos (and had a Reclast infusion yesterday). I was VERY anxious about giving myself injections! I had my husband do it for the first couple of weeks, but then he had to go out of town for a few days, so I bit the bullet and did it myself. I honestly almost called a friend to come give me the shot! It took a few days (or more, lol) to get used to it, but then it was easy. Do you have the little chart of your stomach with the squares - Tymlos sent it & you can also download & print. That helped me with placement.

I just turned 61 and my spine was -3.2 originally (at age 58). After about 6 months on Tymlos it was -2.8 and after 18 months it was -2.4, which is over the line to osteopenia! My hips only changed from -1.9 to -1.8. I stopped at 18 months because my doctor didn't think I'd get more gains since it had slowed down so much. I just posted on the positive experiences with Reclast thread that after 24 hours I haven't had any side effects!

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Thank u for replying and for the info on the little chart with squares. I will look for it on line.
I live in CA and my Dr hadn’t been too helpful. I get most of my info from others on this site.
So happy you achieved good results.
I’m only starting on 4 clicks to see how well I tolerate it. My Dr wasn’t aware you were able to titrate the medicine.
Thanks again and if u have any other tips please let me know.

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1 reply
fili123 | @fili123 | May 30 1:08am

Hi
I’m 77 and just starting Tymolos.
I put it off due to the cost but this year if u have Original Medicare, you can’t spend more than $2000 total on drugs. Also your part D plan will have a payment plan option.
This was all done by Pres Biden.
I don’t know if it will continue next year but trying it now.
It’s suppose to build bones so hoping it works.

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fili123 | @fili123 | May 30 1:15am

Did u throw out your pen after 30 days even though there was still medication in it? I’m starting on 4 clicks so I won’t b using all the medicine but they claim it’s no good after 30 days.

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1 reply
seh801 | @seh801 | May 30 7:49am
In reply to @fili123 "Did u throw out your pen after 30 days even though there was still medication in..." + (show)
@fili123

Did u throw out your pen after 30 days even though there was still medication in it? I’m starting on 4 clicks so I won’t b using all the medicine but they claim it’s no good after 30 days.

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I threw it away after 30 days - didn't want to risk it since that's what they said to do. I found the Tymlos patient support helpful when I had questions. With my insurance I had to use Optum Specialty Pharmacy and they also had pharmacists available for questions. When I 1st started Tymlos I had right upper quadrant abdominal discomfort, and called several times. We never figured out if it was from the Tymlos or from adding Pilates to my weekly workout schedule at the same time & not breathing correctly! I reported it to Tymlos and talked with both my osteo doctor and GI doctor about it. Upper abdominal pain is a rare side effect listed, but it was mild and resolved.

There is SO much great info about taking Tymlos and I didn't find this forum until a few months ago - wish I'd found it when I was first diagnosed! Lots of different experiences. Some people take it in the morning, some at night, which is what worked for me. Some people have terrible side effects and some have very few. Best of luck to you (and everyone else starting it)!

Adding: Tymlos also sent me a travel container for the pen and I think 5 needles - it was super helpful to have! There was a spot for alcohol pads too.

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2 replies
stress101 | @stress101 | May 30 8:48am
In reply to @seh801 "I threw it away after 30 days - didn't want to risk it since that's what..." + (show)
@seh801

I threw it away after 30 days - didn't want to risk it since that's what they said to do. I found the Tymlos patient support helpful when I had questions. With my insurance I had to use Optum Specialty Pharmacy and they also had pharmacists available for questions. When I 1st started Tymlos I had right upper quadrant abdominal discomfort, and called several times. We never figured out if it was from the Tymlos or from adding Pilates to my weekly workout schedule at the same time & not breathing correctly! I reported it to Tymlos and talked with both my osteo doctor and GI doctor about it. Upper abdominal pain is a rare side effect listed, but it was mild and resolved.

There is SO much great info about taking Tymlos and I didn't find this forum until a few months ago - wish I'd found it when I was first diagnosed! Lots of different experiences. Some people take it in the morning, some at night, which is what worked for me. Some people have terrible side effects and some have very few. Best of luck to you (and everyone else starting it)!

Adding: Tymlos also sent me a travel container for the pen and I think 5 needles - it was super helpful to have! There was a spot for alcohol pads too.

Jump to this post

I have read on here from others and my endocrinologist also said, if kept in refrigerator it will last longer. That helps saving when some of us are titrating. Doesn’t make sense day 30 is good but not next day. Look on other posts here about this.

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1 reply
seh801 | @seh801 | May 30 9:51am
In reply to @stress101 "I have read on here from others and my endocrinologist also said, if kept in refrigerator..." + (show)
@stress101

I have read on here from others and my endocrinologist also said, if kept in refrigerator it will last longer. That helps saving when some of us are titrating. Doesn’t make sense day 30 is good but not next day. Look on other posts here about this.

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Agree with savings and also wondered about it not being good on day 31. I was very lucky that my insurance completely covered it and I got a new pen every 30 days, so I didn't have to worry about the cost. When our insurance changed in January and it didn't cover 100% Tymlos had a savings card that covered the difference. Just had a conversation about my husband and paying for medications and procedures - so incredibly expensive.

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fili123 | @fili123 | May 30 10:59am
In reply to @seh801 "I threw it away after 30 days - didn't want to risk it since that's what..." + (show)
@seh801

I threw it away after 30 days - didn't want to risk it since that's what they said to do. I found the Tymlos patient support helpful when I had questions. With my insurance I had to use Optum Specialty Pharmacy and they also had pharmacists available for questions. When I 1st started Tymlos I had right upper quadrant abdominal discomfort, and called several times. We never figured out if it was from the Tymlos or from adding Pilates to my weekly workout schedule at the same time & not breathing correctly! I reported it to Tymlos and talked with both my osteo doctor and GI doctor about it. Upper abdominal pain is a rare side effect listed, but it was mild and resolved.

There is SO much great info about taking Tymlos and I didn't find this forum until a few months ago - wish I'd found it when I was first diagnosed! Lots of different experiences. Some people take it in the morning, some at night, which is what worked for me. Some people have terrible side effects and some have very few. Best of luck to you (and everyone else starting it)!

Adding: Tymlos also sent me a travel container for the pen and I think 5 needles - it was super helpful to have! There was a spot for alcohol pads too.

Jump to this post

Many thanks. I appreciate your input. Praying for the best outcome.

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susanjohnston | @susanjohnston | May 30 11:16am

Do you happen to know how long you will be on Reclast?

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mint | @mint | May 31 8:58am

Thanks for posting! You said "my doctor didn't think I'd get more gains since it had slowed down so much", could you say more more about how you knew it had slowed down? Did you have bone marker tests? dexa scan? My doctor said I should take Tymlos for 24 months but I'd like to learn more about possibly stopping at 18 months. Thanks!

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osteo43 | @osteo43 | May 31 11:53am
In reply to @fili123 "Thank u for replying and for the info on the little chart with squares. I will..." + (show)
@fili123

Thank u for replying and for the info on the little chart with squares. I will look for it on line.
I live in CA and my Dr hadn’t been too helpful. I get most of my info from others on this site.
So happy you achieved good results.
I’m only starting on 4 clicks to see how well I tolerate it. My Dr wasn’t aware you were able to titrate the medicine.
Thanks again and if u have any other tips please let me know.

Jump to this post

Brand new here! Appreciate this site.
I just started Tymlos three days ago. Today was the first day I had rapid heart rate and slight
shortness of breath. I have benign PVCs anyway, and this did trigger some of that. One thing I am curious about is I see what you mentioned and others in different sites about "clicks." The
trial pen from endo has just one dose and one click (injection)...80 mcg. per day. My history includes diagnosed at 43, years of oral meds, two years Forteo, approximately four years Prolia. I ended up with osteonecrotic jawbone, so I am being treated for that and oral surgeon/endo both agree Tymlos safest solution now. I am now 65. Curious as to why there are various clicks?
Thank you!

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