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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Hi,
Just seen you post. Did you try the injections as I’m about to stat and would like to know how you got on . Thanks
I understand your concerns. They are concerns that most of encounter on this bone journey. My greatest concern with my Osteoporosis is avoiding compression fractures. I am 77 and I dont know how old you are but age can make a difference in decision making. There are others here who have taken tymlos. If you have not perused the entire Osteoporosis section, please do. Lots of wisdom here. I noticed you only asked for the folks who are or have taken tymlos and had side effects but not those who have not. Bottom line for me.... I need to remember that every little thing in this short life has side effects. Good luck.
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1 ReactionI just received my first mail order Tymlos gift package lol. Still reading instructions! I see several of you started at a lower dose and ramped up. My Dr never mentioned this at all. I don’t know how to do that and what effects you had that made you request lower dose. So glad to have found this group. I have this big Tymlos box and scared to touch it. I have had 3 spinal fractures, 2 in June wile on my 4th year of Reclast so guess that didn’t work. Admit my bone density scores are pretty bad. Thanks for input to help me calm down and get the nerve to start this.
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2 ReactionsI would think about Prolia or Evenity first, and then if going to a medication like tymlos I would opt for Forteo over Tymlos.
Since you are active , I would also question if there could be something underlying contributing to these issues. Maybe talk to Endocrinology at Mayo , Rheumatology to rule out underlying autoimmune conditions that can contribute to bone loss etc.. and take a good look at any other medications you take for that risk as well.
Make sure your activities include weight bearing exercise and not just things like swimming or pool activities. Those are wonderful , but do not do much for building the bones.
I would be aggressive about this and if you feel a provider is dismissing you or not taking this seriously now, move on and find someone else. Getting this under control now can prevent a lot of issues later.
I would also caution you with mega high dosing of D and Calcium. Factor in the calcium you eat in your diet and the supplements which should be calcium citrate not Tums or calcium carbonate. Calcium citrate is better absorbed. Citrical is a brand name that is calcium citrate.
Getting too much calcium doesnt mean its building bone and the same for Vitamin D, Zinc and magnesium. You can end up with kidney stone and other issues.
Keep in mind Calcium can block the absorption of other medications if taken within 2 hours of each other, so try to take it by itself and give it a 2 hour buffer . Also your body can only absorb so much calcium at once , so if you are blasting in 1200 mg in supplement at dinner you arent getting the full benefit. Its best to stick to doses of 500 mg or less at a time if you are able to do that and take your calcium 2x daily instead of all at once. Sometimes that just isnt possible and then you just have to do what you have to do, I get that...but just realize you probably are not absorbing the full dose if its over 500 mg at a time.
Good Luck. Do some reading and read up on the differences between Evenity , Prolia and Forteo, each one does a little bit different thing.
@wisfamily thank you for all your information. Very helpful. Just wondering why you prefer Forteo over Tymlos?
@wisfamily
And be sure that you and your doc are discussing sequencing of drugs. For instance, there is evidence now that starting with a drug like alendronate, reclast or Prolia can effect how much gain can be made from one of the anabolic (bone building) drugs like evenity, forteo and tymlos. In addition if one is taking Prolia it is important to know that it needs to be followed with another bisphosphonate such as reclast. Prolia basically stops the maturation of osteoclasts but when Prolia is stopped without followup those immature osteoclasts begin to mature.