Depression and Tymlos

So a month later, I've been off the Tymlos 5 weeks and I feel great but my weight loss hasn't reversed yet; picked up just 2#, but I should add about 7 more... the Doc says he has no idea how long that process takes. He's convinced, tho, that I shouldn't resume the Tymlos and start all that side effect activity all over again. So he's kind of leaving it to me to choose among switching to Forteo for whatever that term is and then to Prolia, going directly to Prolia, or just staying off all the meds completely and relying on diet and exercise and being very careful to not fall etc. He's a very accommodating guy but I wish he could just once say "I think you should ____" . We agreed that getting a DEXA scan would provide useful T-score info in making that choice, but it appears my insurance won't cover another one before August 2026. I'm not really considering the Forteo, as I'm afraid it would have similar side effects to the Tymlos; I am considering Prolia, tho I'm hesitant about that one just on general principles. I'd be willing to pay for the DEXA myself ($335) but Doc said that the scans aren't always sensitive enough to detect small changes in bone mass, so it might not give us an accurate assessment. No point wasting the money if the info is unreliable. At the moment I'm inclined to favor staying off all these meds until I can get the next scan, even tho it's a year away. My only bad T-score was -2.4 on the femoral neck, which I know is pretty good compared with what a lot of folks are dealing with. If the scan is better, I'd probably just continue on like that, and if it's worse I could start Prolia then. Interested in peoples' experiences that might be similar and how you resolved them.

Tymlos is my last resort because I have had reactions to everything else. Now I am having terrible bone pain at night in my legs but my depression started about a month into it. I have gained weight with a increase in belly fat but no appetite . I have seen my Endo and this is my last resort. I have already have thyroid issues for years. I am looking for a different approach to treating my osteoporosis and would love any advice.

@plucky70
If you look under the main heading of Osteoporosis you will a number of sub topics that address your interest in other approaches to bone health. Please check them out. Lots if wisdom there.

Very severe depression. I am not generally a depressed person. The longer I’m on it the more dysfunctional and depressed I am. And I am sometimes suicidal. I’m afraid it will never go away!

@surah05 I experienced the same thing and had to stop taking it. The depression went away within two days of stopping.

@plucky70 after taking Tymlos and experiencing all sorts of horrible side effects, including depression and back spasms after injection, etc. now I’m taking Evista. Obviously there are risks to taking it, but my heart is in good condition and so far I have no side effects at all and that makes me happy.

@gowalking Hello,
I just read your message here. I want to tell you that you are an inspiration. I have fought 9 fractures and a recent laminectomy. Most all osteoporosis medications are contraindicated for me. My last hope is Tymlos and even though the dose is at half, I fight depressing gastrointestinal side effects. Reading your particular story has given me strength to know that others are fighting this battle also and not giving up.
Thank you

@casher

Please, Please, Please do not give up!!

I had no side effects, but I know everyone is different.

Six spinal fractures and two years of TYMLOS later, got my bones strong enough for a very precise, risky and complex spine surgery. Five weeks out and I'm doing well. I feel so much better and stand straight now.

I never thought I would have to go through this, but I had no choice. A delay would make it worse.

If you have already had a Laminectomy, you know spine surgery is rough and you would like to avoid it.
So please do the TYMLOS if you can, even the half dose is better than nothing and you may slowly be able to build up to a full dose. It will work out. I know some people take the shot then get light headed, vertigo or their blood pressure changes. I was afraid that might happen when I began so I took my shot at bedtime. I sat on the edge of the bed, took the shot, rolled over, pulled up the blankets and good night....so I never had any of those problems. That's really the only helpful hint I can give you other than to be strong and keep telling yourself "I can do this, I can do this" take a deep breath, relax and do it again tomorrow and the next day and the next day and the next day............

@idlehands I quit Tymlos after 6 weeks due to a parade of side effects, some of which were temporary. The ones that I was not going to accept were the late-day bad leg aches and almost unreal exhaustion...like, barely able to put one foot in front of the other. I know THAT was very depressing. My then-endocrinologist had previously seemed unsurprised/unconcerned about earlier side effects, commenting that those were known side effects, and may well pass. So when the leg pain (6 or7 level) and the exhaustion came along, I knew I could not get used to them and try to wait it out. I had been very busy with a lot of family things that mean a lot to me. I stopped the Tymlos, and in two days began to feel like myself again. Found a new, really awesome endocrinologist who said I was absolutely right to quit the drug. She did persuade me to try the Forteo, even though it is similar to Tymlos, since my spine score was -3.6. I did so, though nervously. I have had a lot fewer issues with it, most of which I can handle, and which may even pass over time. I have been on it almost 3 months. The depression you've had may be related to just feeling so lousy from the drug, in general?? It is exasperating to think of an indefinite period of feeling unable to have your normal life when you can't even be sure that the drugs will really help. This sometimes feels like a do-it-yourself disease with the lack of consistency and clarity . My excellent doctor agrees.

Greetings,
I’m on my first month about to complete my first pen. For the last couple of days, I’ve been having suicidal thoughts and didn’t know why.
Just spoke to my friend and she said maybe it’s because of that medication that you’ve just started. I never read anywhere that that could be a side effect of this medication. I literally feel that. I’m better off dead than alive. I had a seven level spinal fusion seven years ago fuse from my T1 to my S1. Surgery was totally successful, but now recently diagnosed with severe osteoporosis has taken me on a whirlwind. Was not thinking suicidal or life is no longer worth living until recently. I’m left speechless.