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. 💐

Yes, pondering this issue has led me to research carefully and to learn whatever I can—including from this site, where other patients share their experience and support one another… the choices for OP are not easy..ideally our docs are partners in healing and can help us…OP develops slowly, so I’m using this year to sort it all out, without immediately diving into strong meds. Recently cancer-free, so my docs are cautious about what to prescribe…so, at present, I’m very proactive in learning as much as possible first. Meds for life is no small issue.

@beachesanddreams thank you…I always enjoy your posts !

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

Gravity3, you make an interesting point that is more about the paucity of drugs and lack of research investment in osteoporosis.
There should be major studies determining why, for example, bisphosphonates so adversely affect some women while other women have no side effects. It could be that autoimmune patients should not be prescribed bisphosphonates because of the drugs effect on the immune system.
A medication causing swelling in the joint might be tolerable, but inflammation damages the joint. When we are lucky our aches mean we need to initiate a change. I rather think that side effects need to be considered for the damage they might be causing. While bravery is always admirable, it isn't brilliant when is causes self harm.
I wish we all would expect more from research allocation and from our doctors some who still resist the idea that the drugs are causing even the side effects listed in the package inserts. And some of whom are still resisting the use of bone markers so that patients who tolerate side effects have no benefit from the drug.
Silence redounds against the many who suffer and those who will suffer this debilitating condition. And vote. Of all the new government savings for various drugs there are no osteoporosis medications on the list. We have to expect more, if there is to be change.

@nycmusic That is so kind of you to say, thank you, especially given that I am the chattiest of Kathy’s and just love to talk. 😂

I should start my own rant channel on YouTube or something. 😜

@nycmusic First of all, big congrats on being cancer-free. That is a monumental challenge, and my sincere hope for you is that you will remain so always.💐

You’ve mastered by now the art of self-care, so doing all you can with diet and exercise are things I’m sure you’re already doing. And with your doctors’ help, the right course(s) of action will be taken, I’m sure of that.

To many healthy days ahead for you! 🥂

@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.

I can only speak for myself. I am willing to tolerate side effects that do not severely impact my quality of life and activities of daily living. This includes being able to exercise, which is something I take seriously to help me build bone. This means my pain and fatigue level need to remain mild to moderate. If I can't exercise because I have pain or am too tired then I would refuse to take any medication.

I was one of those who was able to take Fosamax with no issues at all.

Tymlos made me tired and gave me some constipation which was annoying at times. I did get through four months of it but was not feeling 100%.

Forteo gave me such bad constipation that I quit taking it.

Evenity has been middle of the road for me. I am tired for about a week after my shots but can still force myself to exercise. I have knee and hip pain that requires daily analgesics to sleep and to exercise. I am willing to put up with it because it's only 12 months in total and I only have 2 months left. I can only hope it's helped.

I know I'll need to do Reclast after and am willing to try. But I'm fast approaching the limit of what I"ll do.

I've addressed a lot of what one needs to do lifestyle-wise and my endocrinologist has potentially identified an underlying cause (idiopathic hypercalciuria) so I really hope I can take a break.

Of course, life doesn't always go as planned and additional fractures might mean a return to medication.

I guess I've accepted finally that this is a lifelong disease like many others that have to be managed. I am sure many people with heart disease or diabetes or other diseases wish they could stop taking meds but that just isn't a reality for them.

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