Afraid it the treatment meds for osteoporosis

@sizwhatitiz2 I came across your reply here, and wanted to respond. I, too, am lactose intolerant, and always have lactaid on hand. I drink Lactaid milk, and Greek yogurt and cottage cheese don’t bother me at all. Everyone is different, of course, but I was heartened to see that we both take the exact same vitamin supplements.

I currently have both psoriatic arthritis and osteoporosis. I’m currently on SKYRIZI; I don’t care for it at all. I’m not getting all that much relief, and I’m getting small infections with fever every 4-8 weeks. It’s been difficult.

My rheumatologist wants to add Tymlos to the mix, and I am fighting it mightily. I did very well with Alendronate and one Prolia injection. My lumbar spine is the only thing showing osteoporosis (-3.2), every other indicator is osteopenia.

I don’t want it to get worse, of course, but taking two powerful drugs at the same time is taking a toll on me mentally, it really is, and my doc shrugs it off. I’m in the process of finding a new rheumatologist who can provide support and balance. Rheumatologists are hard to find where I live, so that makes it difficult.

I hear you, and I understand how you feel. I truly do. I’m sending you my most healing thoughts, that our fears may be assuaged somehow and we can live our very best lives. Be well. 🙏🏻

@beachesanddreams it does seem that some of these meds are similar to chemo, in terms of side effects ! We need far better treatments !

@nycmusic Indeed! 🙌🏻 I also had chemo/radiation 22 years ago, and I honestly wasn’t nearly as frightened of getting sick then as I am now!

I so agree about better treatments, and I’ll say this with my whole chest: if these drug companies are going to put out drugs with these nasty side effects, then it is absolutely incumbent upon them to provide patients with OTC treatments and other advice to combat the side effects and contribute to overall health and quality of life, both physically AND mentally.

When I was on chemo, a nurse took 20 minutes prior to my first induction to provide a detailed list of OTC treatments that help with the side effects, and that woman was a lifesaver, so much so, I’d give gift bags full of the same items to women I knew who were diagnosed.

@beachesanddreams love your note ! Actually, my internist said I’d been through a lot (CRC) this year, and that the endos she knew would push the meds, not help with finding the best alternatives…so I’ve been researching on my own while getting OP directed PT, walking more,exercising, adjusting diet and taking New Chapter bone supplement for now. PS The 2 meds that I hear better things about are BHRT (hormones in patch form) and Forteo..always hoping for something new and better to come along !! Wishing you the best !!

@nycmusic I, too, feel my rheumatologist has been pushing both SKYRIZI and Tymlos on me. It is unsettling, to say the least.

At my last appointment, I spoke with his PA about trying to build my bone with diet and the right supplements, and her exact words were, “he will never go for that.”

I got to my car and started calling other rheumatologists in my area, while sitting in his parking lot.

There are options out there. I’m not anti-drug, I assure you. Chemo saved my life.

I am, however, pro-quality of life and VERY pro-listen to me when I tell you how I wish to treat my mind and body.

Wishing you all the best as well. So glad to have connected with you here!

@beachesanddreams so glad to meet you and learn from your posts, which fortify my own thinking.thanks so much ! I will be interested to see what you come up with-as we are on the same page about docs listening, being real partners in healing, where we work together—also, quality of the life I gave left really matters to me…i respect the fact meds can help, but with OP the choices are not easy… the community posting here can be very helpful and heartening.

@beachesanddreams I would take it a bit further. Not only OTC meds, but prescription meds for side effects. I have had problems with almost every body system at on time or another during my one month on Tymlos: significant worsening of memory, anxiety, worsening of muscle and joint pain, fatigue, balance, headache, . constipation, nausea, bloating. I am not saying that Tymlos absolutely caused these things. Some of them were present and just became worse. But regardless, the negative changes all occurred when I started the drug. Some have lessened or stopped. But when I was waking up several hours after the shot, nauseated and sometimes vomitting, I notified my doctor. I had to practically beg for something to take for that problem. She finally gave me 8 pills of a pediatric dose of Zofran, and said if I continued to have this problem, she would switch me to another drug (This after spending our entire first visit telling me that Tymlos would be the only one that would really help me) Willing to go to a less effective drug because of a common side effect. I don't get it. If side effects..many of them lessening over time..involve treatment, we scrap the whole plan?? Different doctor?

@mamabear77 maybe, a different doctor…many give orders without listening, not a healing scenario…many are okay with patients getting quite sick, as if that’s the only alternative to fractures ! Hello !?!

@nycmusic “…real partners in healing…” oh, this is everything this morning. Beautifully said, thank you.

I’m only on day two here, so if I’ve helped you even in the tiniest bit, then I am grateful and glad I made the choice to join. I was peeking in from the outside and decided to jump in and I’m glad I did.

People supporting one another…is there anything better?

Wishing you the most beautiful Saturday! 🦋

I feel I’m constantly fighting nature. Although I fully believe in science and know many medications are essential in our existence and have helped to save lives ( I’m a retired Nurse)- it also seems, we have the capability to make a pill or injection for every problem, but our bodies nature isn't made to accept it always…. Drs, for the most part are eager to recommend these meds without any other consideration. These medications for osteoporosis seem to go against and do alot to mess with our nature and I just feel maybe we go too far trying to solve every problem. Of course I’m saying all this without having experienced a fracture - maybe I’d feel different if I’d experienced that🤷🏻‍♀️
I’m urging my 36 yr old daughter to start now - researching and learning what to do during her youth so as to hopefully not live this dilemma. What I wouldn’t do to have known more and tried hard to prevent when I had the chance. I never recall any Dr ever bringing this up to me or discussing plans to prevent osteoporosis.