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Tymlos side effects I've encountered
Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?
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You can only take Tymlos for two years. You'll still need a plan for what comes next.
I haven't heard about blood in the urine caused by Tymlos. I don't even know how it would cause that. It could be unrelated since there are many things that can cause it. Good that you're getting it checked out!
Thanks! I'm aware there is a 2 year limit. But I am afraid my doctor will tell me to get off it now, after just a few months. And there is no good option for me (I've been reading up on this the last couple of years).
Blood in urine is a possible side effect, I've read that in a couple of places. I'm just wondering if anybody else has had that and what was advised.
I believe the concern is kidney stones (which I've never had). Though blood in urine could be from bladder infection or something else. But I'm concerned.
I am going to try to get to an endocrinologist here who specializes in postmenopausal osteoporosis and hormone replacement therapy. I have to hope that perhaps the right HRT could be what I can use AFTER I do finish with Tymlos. She's not in my network, so I need special referral but I'm somewhat hopeful my primary care doctor will refer me to her. I just did not think I'd need a back-up plan so soon.
Thank you again. If anybody else can share blood in urine being an issue, I'd appreciate it. I do read a lot here. You are all helpful to each other.
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1 ReactionCall the manufacturer - ask questions. I did. Called my doctor and bugged the crap out of him. They assigned me a team nurse. There was a lot which was neglected in my case when I started the Reclast and then the Tymlos. Now, 2 years down the road, everything is smoothed out. I had to stop and restart "titrating" up to the full dose. It took 2 weeks on 2, 2 weeks on 4, two weeks on 6, and then to a full 8. They encouraged me to stay on the drug and magically all the side effects would stop after 2 - 3 months. Magically they did!!! I'm glad to be on the medication. My tests are trending positively! work closely with all those you can get your hands on for encouragement!
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2 Reactionsyes, I have experienced excruitiating muscle cramping in my inner thighs about 6-7 months into taking tymlos. It happened a half dozen times. I have not had it happen again. I did end up lowering my dose from 70 to 60 because my knees were killing me and I feel better.
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1 Reactionharry, Tymlos can cause kidney stones which can cause microscopic blood in the urine, You have to call your doctor tomorrow. If you have some form of mychart, you might ask for an ultrasound of the kidneys. Other things can cause this blood in the urine from UTI to Cancer. It is important to determine the source.
If you are unable to continue with Tymlos, you might try Forteo which is less likely to cause hypercalcemic stones.
I realize this thread is old, but I want to add my experience so others may benefit from it. A few months after starting Tymlos I experienced excruciating low back pain, random sharp pain in my ankle/calf/thigh, racing heart, overall weakness. I started/stopped it for several days and there was a clear correlation between taking the drug and the symptoms I mentioned. At first, I thought it was a really bad flare up of my low back. It was not. After being off it for about a week all the symptoms resolved.
Hope this helps.
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2 Reactions@richardindallas
I’m about to start this and I’m scared as heard the side effects an be bad.
@mandie4712 There is no way to know what will happen. Most people do OK with it. The problem is that threads like these will attract people who say "I had bad side effects." I'm not dismissing them at all. I've been on it for 18 months with no side effects. That doesn't mean anything, either! Any one person's experience has no bearing on what yours will be.
All you can do is try it and see. Some side effects are mild and go away after an hour. Others go away in time as your body adjusts. And some people just can't tolerate Tymlos, it's true. I will say that you're not going to have a debilitating, permanent side effect. Tymlos doesn't stay in your system for long, so if you have a problem and then stop, you should be ok soon enough.