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Tymlos-Timing, travel and meds, Oh My!
Osteoporosis & Bone Health | Last Active: Feb 13 11:43am | Replies (45)Comment receiving replies
@cpog I have been approved. All I have to do is place the order.
I haven’t yet because I’m still gathering information to try to allay my serious concerns about side effects.
I spent all of last year dealing with very difficult side effects due to two drugs I was prescribed for a supposed inflammatory condition. I lost hair for 8 months. I developed more inflammation, causing me to have to see four different specialists. I’m off those drugs now, and am just relishing in feeling better, you know?
I want to deal with my osteoporosis, truly I do, especially because it isn’t even that bad.
I spoke with a Tymlos clinical educator at Radius yesterday, and while she was courteous and professional, the message was, if you have side effects, go to your doctor. There’s no information on how to mitigate them and make the drug easier to take.
The advice I’ve seen on this forum is the most helpful and comprehensive I’ve seen. Two rheumatologists have not told me anything about this drug, it’s just here, take this, I’ll see you in three months.
I want to start low and titrate up. Doc says no, educator says she has heard other patients do that but they can’t recommend it due to FDA guidelines.
I know I have to dive in. The educator told me they can do an injection instruction over the phone.
What gets me about so many injectables especially is that the dosage for small, slim women with few to no symptoms is the same as a 250-lb man with several to many symptoms.
This is the part where I have to take a deep breath.
Keep me posted…🙏🏻🌺
Replies to "@cpog I have been approved. All I have to do is place the order. I haven’t..."
@beachesanddreams I hope you will feel some resolution soon for yourself. As I said, I am on the other side of the spectrum. I was happy to go on this medication)it’s basically a hormone). I was able to do titration and ramp up quickly. I’m glad I did, full dose on day one might have been too much. It’s been good do far. Good luck to you and I hope things go well for you in the future
@beachesanddreams I hope it is going well for you! I want to give you encouragement. I was diagnosed with severe osteoporosis in my 30’s and have so worried about side effects that I put it off until now, and I’m almost 63. A few spontaneous spinal compression fractures woke me up. My first few days I felt naseous and a racing heart for a bit, but looking back I think this was fear , not the drug. I tried smaller doses and it made no difference. I take it every morning as soon as I get up so I don’t forget. Often I’ll have a small snack then off to my workout. I have had no side effects since and am glad I finally took the plunge; I wish I’d done it sooner. I really hope it’s going well for you too!
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@beachesanddreams I know what you mean about side effects..... I have lupus as well and have had previous battles with drugs and side effects. It's so scary. I''m tiny as well, 4 ft 11 and 105 lbs. My spine numbers really decreased in one year although I have osteoporosis in other areas as well but my spine is -3.5......I asked my Dr about titration as well and she said not a good idea. The studies done are for the full dose. I was on Fosomax for 4 years from 2013-2017 and the last several years the benefits from it have gradually worn off. I've been betting DEXAS every year. I'm seeing an endocrinologist for the osteoporosis. My rheumatologist is for the lupus. My endocrinologist will send me for bloodwork after I've been on it for a month to check my kidneys. I have a bunch of blood work I'm having done Wednesday that me primary Dr is doing. I want to make sure that everything looks ok before I start this medication......Let's see what next week brings. I'm still waiting for my Dr to send the RX. Hope to talk soon.