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I am afraid of trying Tymlos and other drugs due to side effects
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!
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I consider this statement to be alarming
"But when I heard the WORSE the side effects the BETTER is the positive effect, I refused to change to another medication. "
That may be true up to a point for some side effects. However, a person who has a strong reaction to penicillin would be wise to listen to their body and not continue taking the drug assuming the reaction means it is working to fight a bacteria. Reactions that would make descending the stairs from my bedroom dangerous are also to be avoided.
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1 ReactionHi, I can report I'm wrapping up year TWO of Tymlos and just got my Dexascan back for my doc visit this coming week and am pleased to say my score showed noticeable improvement (my numbers were worse than yours, but my age is similar, 64/very active/athletic, no fractures but heavy duty osteoporosis due to early menopause (41/42) which evidently drained all my estrogen and they didn't "catch it" until way too late; finally using HRT bioidentical but was not a candidate for lesser osteo drugs as they said I needed 'bone building' NOT bone maintaining.
My side effects initially were annoying but not upending, (fatigue, slight dizziness so I began taking it at night to compensate) and no one told me I could 'ease in' instead of going to the full/max 80 dose, which I did right off the bat. That said, looking at these scores (they'll give me the full analysis this week, I'm just reading the labs myself and the accompanying positive verbiage) I would say it's WELL worth your while.
I had wanted the Forteo initially as it seemed to be the 'gold standard' but Tymlos does NOT need refrigerated after uncorking the pen, so that has also proved helpful with travel plans etc. I am VERY pleased w/the results and can only hope whatever they 'phase me off' to next is equally productive! 🙂 Best of luck...
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1 ReactionThat should not have to be the case, to be miserable to have something work.
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1 ReactionI'm one of those where every osteoporosis drug gave me awful side effects. I'm a very small but younger person in my 50s and worried about having to take a drug the rest of my life. These drugs aren't even studied long enough for someone at my age. You can develop a fracture from taking them. I think the dosages are too high for a smaller weight person...how do they expect the same dose to affect a 90 lb person and a 200 lb person the same? I had horrible insomnia on eventity, awful joint and muscle pain on fosamax type drugs, crippling migraines on Tymlos....this was just one or two doses. Perhaps when your body is still making hormones it can affect drug metabolism, or is something is using HRT...is that even studied? For now I opted for HRT, collagen protein added to the diet and it helps all the menopause symptoms along with hopefully sparing more bone loss. Eventually i'll need to find something for bone restoration like a Forteo/Tymlos...they need to offer more adjustable dosing though. I was warned away from Prolia as once you take it and stop you'll lose more bone faster. It's a hook you for life drug.
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1 ReactionThe horrible side effects means it has something to work on in your body. It means your immune system is ramping up and effectively doing something that is why I didn’t jump ship and when I was offered the other medication‘s, I looked them up and they weren’t as good so I decided to suck it up and Stay on the TMLOS. You are lumping all the medication‘s into one box. Maybe that’s all you have time for, but it would be better. If you lucked up all the medicines individually most people do not realize how different they actually are my dentist. lumped lump TYMLOS with the biphosphonates. And it is not! I hope you will stick with the TYMLOS until you get rid of the headaches. They go away. You can titrate up meaning start at two clicks and work your way up to eight it’s gentler that way some people stay on a partial dose the whole time, the medicine I am on the TYMLOS is only for two years and then I do a Reclast infusion once a year for three years and then I’m done for life. I went into menopause early at 47. I was on bio identical hormones for 10 years. I might start up again. I’m looking for a hormone specialist because my endocrinologist won’t deal with it I think your idea to use the HRT is a good one! I think you should work with the doctor or a specialist to get the testing all of it – the DEXA, the PNP, the CXT and monitor your bone density as you age. The side effects go away for most of us after two months you know what they say - no pain no gain. my life changed when the surgeon opened up my neck and the bones were paper. Thin and C5 fell apart. It meant they couldn’t do the cervical spine surgery as we had all hoped. I had done all the testing, but there are things which can’t be determined and you just gotta deal with it when it shows up, the bones in my forearm are strong and show no weakness. However, the bones that are in my neck aren’t worth shit. The bones in my lumbar were just fine when they did the surgery six years ago, so you never know. I’d rather be safe than sorry. That is why I’m putting up with the medication , I read all the reports and the reports now confirm all the testing that was done in 2017. There’s a lot of information here. I hope you get to it because many of us have asked these questions before and they’ve been answered by other members and there’s great information here. Good luck .
How is @tkdesign lumping all medications together? She wrote:
" I had horrible insomnia on eventity
awful joint and muscle pain on fosamax type drugs, crippling migraines on Tymlos....this was just one or two doses. "
That is 3 distinct medications she has tried.
How many people would stay on BP medications if those made their lives unbearable? "The horrible side effects means it has something to work on in your body. It means your immune system is ramping up and effectively doing something ".
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2 Reactions@normahorn and @tkdesign I think that @loriesco may be referring to the statement that all f these drugs cause fractures. After 3-5 years the bisphosphonates may, and fracture is a risk with Prolia and to a lesser extent with Evenity but NOT with Forteo or Tymlos.
Also the comments about dosing. I have done low dose of Tymlos, Evenity and now Reclast. It is possible to find a doctor who will work with us small, sensitive people.
I could not tolerate full dose Tymlos. I took a break, talked to doctors, and started at 2 out of 8 "clicks" nn the dosing pen. I ultimately chose Tymlos because the dose IS adjustable. My body adjusted over time and I gradually got up to 7 out of 8 clicks. I had amazing gains in spine and good ones in hip too. I went from severe to borderline osteoporosis, a 20% gain, in spine.
Some of us have had fractures that happen in one moment and alter our lives, bringing pain and disabiilty,. That is why I post here. There are no symptoms or warnings.
That said, holistic approaches may work for some -depending on a variety of factors- with better DEXA scores and milder osteoporosis. For both mild and severe, I recommend Keith McCormick's book "Great Bones," and Dr. Ben Leder's YouTube video "Combining and Sequencing Approaches to Osteoporosis."
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1 ReactionContext is everything. ALL the osteoporosis meds have different reasons for being. EACH person has different needs, biologies and expectations. ALL people don't get warning when osteoporosis meds are thrust upon them. "unbearable" is relative.
Avoiding an "unbearable" breakage and surgery due to soft bones is far more "unbearable" than the side effects of the medications! I would trade my TWO cervical spine surgeries/surprise paper thin bones/and life changed forever with limited mobility, doctors, rehab this past year/forced disability and removal from my work - I'd trade THAT for little medication hangovers. If my bones weren't paper thin I would have had only a SINGLE 100% successful spine surgery and been ecstatic by increased mobility and continued success at my work! Its "unbearable."
Why would I - or should I care - how many people stay on the medication? The only reason I am here is to help others get information. Maybe that information helps them speak to their doctors to get what they need. I am an activist and an advocate. My endocrinologist absolutely left me in the lurch. He's a guy. Self-entitled and arrogant. However, he just doesn't want to be challenged because he has many others to serve. He looks haggard. He told me he "put his mother on the Tymlos." "She had no side effects." Lucky her! But reading between the lines, he obviously was trying to communicate his ultimate thoughts about the medication's efficaciousness. Had to force a meeting. The entire team was present. I had a list of questions. They were all answered.
I had the most HORRID reaction to the Reclast. I learned my body's immune system is responsible. it's not the medication - ITS THE NEED for my body to REPAIR its bone structure. I happen to have SEVERE need. The only thing is - it doesn't come in the package others (drs.) can see.
One has to look at the consequences of each medicine individually. They each have different side effects and not lump them into a ball of wax that makes one walk away. @tkdesign - it was not said how long they were on each medication. That matters. I had to stop then start again and titrate up. Two months - like they said all the headaches stopped. The body and blood pressure all adapted.
When I return to the Reclast, after completing this medication -- It will be MINUS the worst reaction i've ever had in a single moment in time. But - I have been through this with the peg-iterferon ribaviran medication for Hep C. When the medicine WORKS and does its job the reaction of the immune system subsides.
To have my surgeon and I look at an xray of my spine from last november and this august - and SEE the spine bones denser is reason enough for everything!!!
I hope this clarifies. thanks @windyshores for helping me explain.
IF I hadn't gone into menopause early things would be a lot different. If I hadn't stopped bio identical HRT 10 years ago they would be different. I think hormones stave off bone deterioration for sure. But cancer risks had to take precedence at that time of stopping. Its always a balance as we age.
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2 Reactions@loriesco thank you for sharing your experiences on here. You are very helpful!
thanks @windyshores for your gifts. By Grace we go!
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