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 mkav2023, lilyann here. i don't know or haven't taken any of these drugs, but i put in the words on my search engine: OSTEORADIONECROSIS OF THE JAW. this lady was interviewing this dr. and i was impressed. he talked about a lot of those drugs, so maybe that would be of some help. take care and wish you the best.
I haven't begun treatment yet, but Tylmos is an option, along with Evenity(which my insurance has denied). I'll be 66 this year, early menopause and just took a bone scan last year and diagnosed with severe osteoporosis. I'm
healthy (or so I thought) and I'm on no medications. This tread is so helpful and I appreciate the thoughts and wisdom from life experiences. I still work a full time job and often have events in the evenings. I already feel overwhemed about when to take the injections and actually giving myself a shot everyday. What is the time span allowed for giving yourself the injections?
Rhonni1225 doing Tymlos shots becomes like brushing your teeth, in my experience. I did better doing it in the morning: others do better in the evening. You can play around with it.
I have low blood pressure normally so I hydrated and sometimes ate something salty. At first I rested for a couple of hours. Then I found that getting up and out helped- maybe activity raised my blood pressure. You should be able to go to work in the morning. Or maybe bedtime will work for you.
As you can tell, some of us had side effects we could not tolerate at full dose and some even at half dose. The pen has 8 clicks and each click is 10mcg. If you have any trouble you can try going down to 2 clicks and work up as tolerated. I got up to 7 clicks (out of 8) and had dramatic gains. Many are fine with full dose but I just wanted to mention that.
I miss my Tymlos! I felt safe on it, and after 7 spinal fractures, haven't had any in 4 years.
So if I try to consistently to give myself injections at 8 p.m., would it be okay if sometimes I did it at 6 p.m. or 10 p.m.?
One of the endocrinologists I consult with told me strictly to take Tymlos at the same time. Quizzing him on the exactness, he laughed, " Take it in the morning the afternoon or the evening everyday." The drug leaves you system fairly rapidly, the half life is less than one hour (usually) complete within 24. I later decided on Forteo.
The time for injection is less than one minute, but at the beginning you should allow four hours to see if you'll be having side effects. It makes some people a little dizzy.
Tymlos doesn't work by building up in your system the way some medications do
@rhonnni1225 you can vary the time within reason, I think. If I was, say, 6 hours late I would do it 3 hours late the next day then back to normal, or something like that.
But if you are just two hours off I would think it would be fine. And I probably didn't need to do what I did- it was just what I did with other meds.
Tymlos doesn't build up in your system so varying the time should be fine. You can ask the pharmacist at your distributor if you want to hear from a professional!
@rhonni1225, I started taking Tymlos in the morning, but, after some time on the meds, learned that side effects may not be as much of a nuisance if taken at bedtime. I slowly switched my meds from morning to evening by varying them by a bit on a daily basis. I simply found it more convenient to inject the meds in the evening once the world had quieted down. Talk to your doc about the best way to go about the switch if you decide to go that route.
I think adverse reactions are easier to deal with when using Tymlos vs other OP meds - as several of our members have said, Tymlos doesn’t remain in one’s system long. I did have debilitating side effects with Tymlos, but once I stopped taking the injections, the issues began to subside within a few days and had resolved within about a week.
I was approved for and completed the recommended number of Evenity injections which worked well for me; my doc (at that time) told me he would’ve had no issues having Evenity approved for me prior to Tymlos, but he chose Tymlos for me because of the cardiovascular component of Evenity. I did get a “go” from my cardiologist prior to beginning Evenity.
Wishing you the best in your search for treatment choice. I have been enlightened by other members who are more than willing to share their research and OP med experiences. Cheers!
@rhonni1225
I am fairly new to Tymlos, just on my second pen. I decided to take it at night, as my mornings are usually pretty busy. I inject right before bed. My bedtime varies by one to one and a half hours. I did not discuss exact time with my doc—good question!
In terms of side effects, for the first almost month, I experienced little to no side effects on full dose. Many nights I would briefly have the racing heart, and sometimes a little bit of light headedness. Like windyshores suggested, I tried to have something salty (I drank a bit of zero sugar Gatorade) shortly before injecting. Now I rarely experience any effects.
The injection itself becomes a none event. Once in a while it will sting a bit, but usually I don’t even feel it. It has become my joke that while the rest of the country is self injecting to lose weight and improve their appearance, I’m like an episode of “This Old House”—I have to put my money and effort (belly injections) into the unglamorous, sagging foundation!
I seem to remember a study with Forteo that showed slightly better effectiveness if injected in the morning, but in that article I also read not enough to justify changing if evening is working for you. I will try to find that study.
I completed 2-years of Tymlos in June of this year and wish I could have continued past the 2 year protocol. My bones improved and now I’m doing bioidentical hormones before I begin Evenity next month.
Injecting was a bit stressful at first but it’s really simple, painless and like brushing ur teeth. I first injected in the morning but it was easier before bed and I was not aware of any momentary side effects because I’d sleep thru them. I injected the full daily dose from the beginning never veering from that but it’s nice to know there is an option to begin with less clicks and ramp up once ur body adjusts.
I had a 15% increase in bone density in my spine and 3.5% in my hips.
I did adhere to a pretty consistent time frame of between 10-10:30 each evening…that made it easy rather than mornings and then exercising after an injection when my heart rate would increase already.
Everyone is different and I certainly hope ur experience will be an easy one. Rose 🌹