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.

Profile picture for tkdesign @tkdesign

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.

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I’m so sorry to hear. You’re so young it must be beyond frustrating. I would find a dr of physical therapy that specializes in osteoporosis. I’ve been seeing one for a month and he’s been training me. Being on Prolia I’m not sure how much help it will be. I do feel stronger in my core though. Everything I read once you’re on Prolia the absorption of calcium is greatly reduced. I’m not sure what meds you’ve been on. There are so many. Are you seeing a regular MD or one that specializes in osteoporosis? Good luck and don’t give up.

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Profile picture for laujodrik @laujodrik

I’m so sorry to hear. You’re so young it must be beyond frustrating. I would find a dr of physical therapy that specializes in osteoporosis. I’ve been seeing one for a month and he’s been training me. Being on Prolia I’m not sure how much help it will be. I do feel stronger in my core though. Everything I read once you’re on Prolia the absorption of calcium is greatly reduced. I’m not sure what meds you’ve been on. There are so many. Are you seeing a regular MD or one that specializes in osteoporosis? Good luck and don’t give up.

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Yes I have an endocrinologist that prescribed me tymlos, but already after a month i'm having some awful neurological side effects. This was kind of my last straw. I've concluded my body treats pharma like an allergen...nearly everything i try it's like a brick hits me. I'm in PT already recovering from surgery last year, so am in chronic pain already, hard to walk, hard to lift weight...I've had these issues over 10 years. It caused muscle wasting and so I was already at a disadvantage. I'm not sure I have much hope at this point.

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Profile picture for lnl @lnl

I have been on Tymlos for just short of one month, so I'm hardly an expert but I hope my experiences will help you. I joined this community to hear from others who were further down the road than I was, so that's what I can offer you.
I was terrified to go on Tymlos for all of the reasons. I am 63, small, active, in otherwise great health, and feared ruining all that. My worst number was -3. I also think of myself as someone who gets every side effect there is for everything--which really isn't true-- but close.
I am ramping up the "clicks" very slowly-- heading into week 4, I just administered my first "3" dose. The side effect I get is the increased heart rate. It is scary and uncomfortable, but apparently not dangerous. The Tymlos nurse (and yes, if you start the drug, get assigned a Tymlos nurse-- mine is wonderful--and yes, I am aware of who she works for) recently suggested I lie down and elevate my legs to lessen the effect. It totally worked. This gets into the issue of morning or evening injections (you'll find a lot about that on this site). I started out with evening, but then I found myself dreading the night coming, so I switched to morning-- when I'd be more distracted. But now that I'm lying down after the shot, I'm going back to evenings. I have figured out how to do the injections, so I don't dread them and the evening so much. I could keep talking, but I'll stop for now.
I will be glad to answer any other questions that I can.
Good luck.

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I take a beta blocker for heart rate which was mostly taken care of by having an ablation in 2002. I am very nervous about starting the tymlos pen that just arrived for so many reasons but heart rate increase is top

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@susanfalcon52. Not sure I can recommend but only share our experience with Tymlos, somewhat close to where you are. . I am my wife’s caretaker. Next week she will complete Tymlos -2yr. No side effects at any time . She is 79yo, dealing with several other health conditions (ME/CFS/RA and more) her body tells the story. In the same day she will decide to take Reclast or no treatment… possible effects being a major consideration. Experiences found on this show it is a difficult decision..

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Profile picture for janjen @janjen

I take a beta blocker for heart rate which was mostly taken care of by having an ablation in 2002. I am very nervous about starting the tymlos pen that just arrived for so many reasons but heart rate increase is top

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I, too, am on a beta blocker and med for essentially failed ablations. Been on Tymlos for 9 months, it definitely causes an increased heart rate for about 45 minutes a little while after I inject. I hate that but I just get through it, try to stay busy and not dwell. That’s why I inject in the morning instead of nighttime. It’s the only side effect I have except for the slight abdominal weight gain which some other ppl have mentioned on this site. It is helping my bones so I’ll put up with it until I’m finished.

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Profile picture for susanfalcon52 @susanfalcon52

I am on Tymlos now and have had no side effects. A couple of years ago, I was on Forteo with no side effects. In a few weeks, I will go on Evenity. I am nervous about it, but since I feel that I must try it, I am choosing to assume that it will be okay. Will report here my Evenity journey.

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I’m glad you’ve had no side effects, but why are you taking the Evenity after Tymlos? I thought they were for the same purpose, and that after you take one or the other, you go on a maintenance med like Recast or Fosamax.

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Profile picture for tkdesign @tkdesign

Yes I have an endocrinologist that prescribed me tymlos, but already after a month i'm having some awful neurological side effects. This was kind of my last straw. I've concluded my body treats pharma like an allergen...nearly everything i try it's like a brick hits me. I'm in PT already recovering from surgery last year, so am in chronic pain already, hard to walk, hard to lift weight...I've had these issues over 10 years. It caused muscle wasting and so I was already at a disadvantage. I'm not sure I have much hope at this point.

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Have you ben checked for MCAS=mast cell activation syndrome? I react to almost 90% of all drugs terribly at this point and fear all osteoporosis drugs. But some people are helped by treatment for MCAS. Unfortunately, I am even allergic to the drugs for MCAS.

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Profile picture for flowers62 @flowers62

Have you ben checked for MCAS=mast cell activation syndrome? I react to almost 90% of all drugs terribly at this point and fear all osteoporosis drugs. But some people are helped by treatment for MCAS. Unfortunately, I am even allergic to the drugs for MCAS.

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No I haven't. Who would check you for that? I don't even know.

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Profile picture for tkdesign @tkdesign

No I haven't. Who would check you for that? I don't even know.

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I have an allergist/immunologist in NYC who knows about MCAS. Actually, my endocrinologist at HSS suspected it because I have such severe reactions to medications and had no idea why. The allergist did blood tests and also sent a 24-hour urine collection to the Mayo Clinic. That's how I got my diagnosis. It's a serious issue for my treatment for osteoporosis.

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Profile picture for flowers62 @flowers62

I have an allergist/immunologist in NYC who knows about MCAS. Actually, my endocrinologist at HSS suspected it because I have such severe reactions to medications and had no idea why. The allergist did blood tests and also sent a 24-hour urine collection to the Mayo Clinic. That's how I got my diagnosis. It's a serious issue for my treatment for osteoporosis.

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Oh you are in NYC...I'm just in a rural area with so little access to decent medicine. I have to travel 3 hours to see my endocrinology person. Maybe I'll ask her about that. How do they treat MCAS? I'm having to use 1 click of Tymlos...that is all i can do, 1 every few days. I don't even know if it will help at all. But there haven't been any other drugs I can tolerate.

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