The Paradox of Osteoporosis Irreversibility

Three weeks before I went to the hospital, I was feeling so fatigued that I could seem to function. I got done what I had to and no more. When this began I stopped my tymlos, not knowing if that could cause afib. I have not had any since mid-Feb. 2022. Need to see my Endo Dr., overdue for my yearly checkout. I have had no heart problem since only my low BP which stays around 100. But that started in early 2021. No one has ever brought up the subject of my being on Tymlos. I wished I had all the answers to my many questions. What have been your experiences? KLH

@kilh has any doctor suggested that your conditions are related to Tymlos use? If not, I just want that to be clear so that new people contemplating the use of Tymlos can be reassured.

Hi, @kilh
I am still on Tymlos, I am on my 17th month right now. I'm doing OK. I hear about side effects like bone/muscle aches and "puffy belly" but I'm not sure if the leg aches I am having are related to Tymlos or to age. I do think the "puffy belly" is definitely related to Tymlos because I stopped Tymlos for about 5 days or so a while back and I did lose some of it. Some days I feel like a Buddha. I have always had the type of body where I am bigger through the middle but it's worse now.

I will not be having a DEXA until around December. I was considering stopping it at the end of the year due to the beginning of the year costing so much when my yearly deductible gets added into the regular monthly cost but then with some googling I read that there is often a big improvement between the 18th month and the 24th month so I will probably hang in there. Heck, I've paid so much already what's another couple of months? I will probably use the Medicare calculator at the end of the year to see if I can find a more favorable Medicare D plan. Using Tymlos for the whole year made the one I chose the least expensive overall.

I will be interested in hearing what your DEXA says. I'm sorry that the meds you are on are causing such bad side effects. Is there an end in sight for those medications or are you stuck with them long-term?
I don't think ECHO is available anywhere close to where I am but its use is a bit controversial. Many feel it is no more help than the DEXA, but of course many feel it is superior to the DEXA, so who knows?
JK

@contentandwell Thanks for the reply. How are you doing this summer with all the heat and we have not had much rain? Still on Tymlos and how is your progress? I do not know how to proceed but wait till I see my PCP. Hope you are staying healthy and well. Let me know how you are doing. KLH

@kilh It hasn't been so hot that it's been difficult. We only have A/C in our bedroom and I think we have used it for about 3 nights so far.

As I said above, I have not yet had a DEXA so I don't know my progress with Tymlos. Keeping my fingers crossed. I will be seeing my endocrinologist in December but if I decide to continue Tymlos through February I will probably delay that appointment.
JK

Hi, guess our comments crossed in sending. Glad to hear you have made it this far. I am so proud of you and for getting this far. My meds are a mystery to me. My BP is low yet I was given BP lowering meds to take. Then I was given 5 more drugs for my heart and BP. I am dizzy most of the time and my balance is not very good. I have been off Tymlos now for 4 months. I do not know whether I will finish a year or not. Now during this time, my knuckles are swelling and my fingers are changing shape. What more?

Hopefully, when I see my PCP next week, we can figure out why and the reason I am on some of these meds. I do not see that they are helping anything, only bad side effects. Due for another echo to see how my heart function is. Cardio Drs. ordered all these meds and tests but my PCP is left out of the loop. I just want some improvement. Hope you see some improvement. When you finish Tymlos, what is next for you? I may have to try something else. We will see what the future holds. Stay safe and well. KLH

@kilh Why were you put on BP meds if your BP is low? That sounds very odd. My prior PCP wanted to put me on BP meds because my BP was running high at times but I chose not to. Now my BP is no longer high, but I have heard that Tymlos can cause your BP to be low so that may be why.

I have not yet totally decided what I will go on following Tymlos but I am favoring Reclast. I find it scary since it stays in your system for a year but the actual percentage of people with serious side effects is minute so I guess I will try it probably.
JK

Good morning, I am so clueless as to why they want my BP lower. Maybe next Thursday, I will have better knowledge.

Years ago (cannot remember when), I had two Reclast infusions. They were so easy, ran upstairs from work and half an hour later was back to work. I did not get to finish all five because my dental implants got in the way. You have to wait 5 months to have them finished and then wait 5 months to start again. So things were kind of put off and never went back. Years later I started Tymlos. And you know the rest. Due for my yearly Endo checkup and Dexa. I wished I knew what comes next. Guess I will just have to wait. Keep in touch and let me know what the future will hold. KLH

@contentandwell, @kilh has symptoms that have not been tied to Tymlos. As I have written, I take 7 out of 8 clicks Tymlos with no problems at all, but I started with two clicks and moved up.

Tymlos grows bone, so is a more effective drug is you have severe osteoporosis. Also, the bone-growing drugs are said to work better if taken first, so you might want to start with Tymlos. Then do Reclast.

@windyshores
I do realize that Tymlos, along with Forteo, grows bone which is why I opted for it despite the very high cost. Tymlos is the first drug I have taken for osteoporosis. I had a minor hip fracture which I think is why I was approved to take it. Many people do not get approved unless they have tried one of the lesser osteoporosis drugs. That of course is sort of backward if as they say, Tymlos is best taken prior to bisphosphonates.

I have done the full dose the whole time, I'm on my 17th month now. My doctor said to start with it and if it needed to be adjusted we could do that. The side effects I have had are the "puffy belly" and possibly leg aches. I am really not sure if the leg aches are a result of Tymlos or not.
JK