Let's discuss this

I struggle to understand how, in the year 2026, doctors are so reluctant to sit with patients and discuss our concerns, let alone go over what a drug actually does, how it works, and the positive benefits it could have. Don’t throw an Rx at me, tell me to inject into my body daily, then give me a wave with a, “see ya in three months.”

Give us a plan B.

Give us at-home or over-the-counter remedies to combat any side effects should they arise.

Give us sources to read that doesn’t require long, agonizing hours on Dr. Google to try and figure this out on our own.

Give us hope that if this one drug doesn’t work, another one might.

I’ve told the story before, but before I started chemo back in ‘03, a nurse sat with me, went over potential side effects I could experience, and gave me a list of OTC remedies that would prevent them or make me feel better. They all worked, every single one.

I don’t think this is asking too much.

I’m furious at drug companies for thinking these side effects should be accepted and tolerated. They have an obligation too.

I’m at the point that drug ads on TV are seriously having a very negative effect on my mind, and I don’t take any of them. The potential side effects are ghastly.

I wish I had a better answer, I really do. But I guess the most concrete one I can offer is this: Doctors, if you want us to take a drug, please let us know what we’re in for and give us a hand. It makes all the difference, and we’ll do better all the way around.

{ok, off my soapbox now}

This forum has helped me immeasurably. I’m finally ready to start Tymlos (and wouldn’t you know, neither the specialty pharmacy and my home pharmacy knows how to get this drug in my hands. 🥴😂)

Wishing everyone out there a beautiful day. 💐

I struggle to understand how, in the year 2026, doctors are so reluctant to sit with patients and discuss our concerns, let alone go over what a drug actually does, how it works, and the positive benefits it could have. Don’t throw an Rx at me, tell me to inject into my body daily, then give me a wave with a, “see ya in three months.”

Give us a plan B.

Give us at-home or over-the-counter remedies to combat any side effects should they arise.

Give us sources to read that doesn’t require long, agonizing hours on Dr. Google to try and figure this out on our own.

Give us hope that if this one drug doesn’t work, another one might.

I’ve told the story before, but before I started chemo back in ‘03, a nurse sat with me, went over potential side effects I could experience, and gave me a list of OTC remedies that would prevent them or make me feel better. They all worked, every single one.

I don’t think this is asking too much.

I’m furious at drug companies for thinking these side effects should be accepted and tolerated. They have an obligation too.

I’m at the point that drug ads on TV are seriously having a very negative effect on my mind, and I don’t take any of them. The potential side effects are ghastly.

I wish I had a better answer, I really do. But I guess the most concrete one I can offer is this: Doctors, if you want us to take a drug, please let us know what we’re in for and give us a hand. It makes all the difference, and we’ll do better all the way around.

{ok, off my soapbox now}

This forum has helped me immeasurably. I’m finally ready to start Tymlos (and wouldn’t you know, neither the specialty pharmacy and my home pharmacy knows how to get this drug in my hands. 🥴😂)

Wishing everyone out there a beautiful day. 💐

I totally agree with you. I don’t want to stop Tymlos—I still feel it’s the best choice for me compared to the other options. I can handle the usual side effects, but the internal dry heat was overwhelming. I’m trying to manage it as long as it’s not causing other problems. I’m concerned because both the Tymlos educator and my endocrinologist said this symptom isn’t related to the medication. Then what is it, and why did it only start when I began Tymlos?
Hopefully someone here has the same symptoms to share

One thing that has helped me is prior to appointments, do as much research over a BROAD area online (frankly Google is one of the lowest scorers IMO, places like DuckDuckGo way better, but that’s an aside) and then boil my questions down to a list and go in armed with this. My doctors (especially my gastro who is a major doctor!) have repeatedly mentioned how helpful this is to them. So say you are considering Forteo, Evenity or Tymlos or would rather be on those than Prolia, etc. gather as many side effect you can, boil them down to simple list, go through first the pros and cons of each, then ask specifically what about this side effect, what about that side effect. I habe to do the same with my other specialists because one of my autoimmune diseases is,particularly rare. So every single supplement or drug that is going to go in has to be closely vetted. I have found, since I have specialists across the spectrum, it’s incumbent on me to make sure they are all sharing records with each other and that I am super well prepared when I go in. Especially with supplements because while one specialist might normally think X is Ok, the other one will point out it is absolutely not for my specific health conditions. Also, things change! When I was first diagnosed with one AI condition they thought a specific supplement was good based on a number of studies, now years later they are telling patients do not take X.
I know you know most of this already, but just want to share what I have been doing and what my specialists have appreciated and IMO has improved my appointments.
Also on side effects, and what each of us can take that’s so hard to sort out. As an AI patient with 3 conditions I think autoimmune patients in general are a bit more tolerant of a range of body ups and downs, often because meds work up and down, and because flares come and go. I know I have had meds and supplements be difficult and some intolerable but then I look at the options specifically for me and always weigh pros and cons and try to work through options. An example is when I was first Dx with RA many of the meds are contraindicated so had a small pool to start. Tried one and had terrible tinnitus so doc said STOP because that could be irreversible. So that’s heavy duty side effect. OTOH Tymlos has been great for me. Does it make me feel like I just drank an espresso for the first hour? Yes, but it’s TAME compared to what I live with daily! Anyway just some random thoughts. Sorry for the long winded response.
Good luck

@beachesanddreams thank you very much for your kind and encouraging post….i appreciate very much your earlier post and feel that you are not only a good advocate for yourself, but also help others to learn how to do it themselves….wishing you all the best always.

@beachesanddreams I had to go through this, I was able to get Tymlos through Walgreens speciality mail order, also Optum as well. You pretty much have to get it through mail order (at least for me with Part D). But it also took me a few weeks to sort out. And, I am the outlier here (though not on all patient sites) in that I am very happy with Tymlos. Makes me feel good.

@nycmusic This means a lot…thank you. People have been so patient, supportive, and kind to me here, and it’s helped me and my mental state tremendously. If I pay it back just a little, that makes me happy. I’m truly grateful. 🙏🏼 🌺

I am not on any medication (age 68) except for osteo, so knowing that I had to start on a life-long treatment made me feel old and sad. I've been lucky enough not to have physical side effects that I can recognize with Tymlos and then Evenity, but the effect on my self-image has been major. I'm working with myself to see this as positive, forcing me to reckon with age and mortality while I am still strong and healthy!

I am not on any medication (age 68) except for osteo, so knowing that I had to start on a life-long treatment made me feel old and sad. I've been lucky enough not to have physical side effects that I can recognize with Tymlos and then Evenity, but the effect on my self-image has been major. I'm working with myself to see this as positive, forcing me to reckon with age and mortality while I am still strong and healthy!