Osteoporosis Drugs

[gwillistexas]

I am curious if any of you have osteoporosis and which, if any, drugs you take. My endocrinologist wants me to take Fosomax, but after reading about it, I don’t want to take it. It can harm the liver.

[7443jec]

I have severe osteoporosis in my spine. I took bisphosphanate, Risedronate, for a year but it gave me acid reflux. Now I have a yearly infusion. Due for the second one in May. Ask your GP about it. X

[VeeWat in reply to 7443jec]

Did it improve your osteoporosis numbers?

[7443jec in reply to VeeWat]

Don’t know yet because they only do the DXA scan every three years. But I’m hoping so. Xx

[gwillistexas in reply to 7443jec]

My dr mentioned the annual injection...$6,000😳.

[7443jec in reply to gwillistexas]

Aahhh, I’m in the UK so it was FREE. 💖💖💖💖

[Junolee]

Hi there. I have osteoporosis too. Took various drugs including fosomax over the past 7 years. Now on prolia injection twice a year. Improved year on year. Has had no effect on my liver numbers. Walk over 10k steps a day and also do weight resistant training for 30 mins three times a week. Feel great and have no problems.

[mrspeffer2]

Morning Girlie.... WOW! I remember when I got the phone call and heard those those same words...osteoporosis and Fosomax. I was on my way to yoga and screamed outloud, No, I won't accept another issue! That was in 2014. So, of course, rebel that I am, researched what I could do to turn this around. I found an article similar to the one I'm posting here that changed things around for me. I believe the bio-identical hormones , my high levels of calcium (parathyroidism), and the D3 and K2 were essential for me. I continued to eat the suggested foods and exercise. Cut way down on coffee and found plant based proteins to replace most animal proteins . Next scan...I'm way back into osteopenia. I'm with you, the drug didn't sound like anything I was interested in. Happy reading. Be well

belmarrahealth.com/can-oste....

[gwillistexas in reply to mrspeffer2]

Hey! I have low results for osteopenia most places but osteoporosis in right femur. I’m like you, I’m somewhat a rebel any my own advocate. I won’t take it just because “ they said”. I may be sorry some day but I’m doing my best to avoid fosomax. Hope you had a wonderful Thanksgiving and that your cheesecake turned out delicious. Thank you so much for the article. I just got home to a hot cup so I will open the article and send to my email. ❤️

[liver-bird]

My osteoporosis was diagnosed before PBC and I was treated with Ibandronate which is the monthly biphosphonate. I also took calcium and vitamin D. The Ibandronate was stopped after 8 years as it can start to give jaw problems. A dexa scan showed my osteoporosis was reduced to osteopenia so the drug worked for me. I still take calcium and vit D. Previously I broke 5 bones but nothing lately. Hope this helps 😊

[gwillistexas in reply to liver-bird]

Thank you so much. 😊

[NFTom]

My wife stopped taking it when she developed serious bone loss in her teeth and jaw line. The dentist confirmed Fosamax has terrible side effects and told her to stop taking it.

[Bonnieanne54]

I’ve had stage one Pbc for over 20 years. I now take prolea

One shot every six months orthopedist says it’s working well. I get bone density test every year

[Ellyne]

I had osteoporosis as well and it was diagnosed way before PBC. I was on fosamax for several years and it kept things the same. Then I was told to get off of it because I was on it for 10 years. After 2 years of being off of it, I had a bone density and my scores had gotten way worse. Dr recommended a prolia injection every 6 months and my scores have improved. I am in osteopenia now.

[gwillistexas in reply to Ellyne]

Thank you. That’s great ! I’ve no doubt the drugs may be beneficial but darn they scare me.

[Luciv]

I also have osteoporosis. I resisted the medications because of fear of side effects. After my Mom shattered both of her shoulders requiring shoulder replacements and broke a hip in 3 separate falls, I reconsidered. All of my specialists: gastro, liver, endocrinologist, immunologist and primary care urged me take the Reclast infusion, which I had in July. I am 69 and medicare covered it, possibly because I tried actonel in the past or because I also have lymphocytic colitis.

[gwillistexas in reply to Luciv]

Thank you. My endocrinologist did mention Reclast. May I ask, are you speaking if Medicare Part D covering it? I am 65 and have Medicare but not their drug coverage.

[Luciv in reply to gwillistexas]

I do have part D. But, perhaps because it was given at a hospital infusion center in Houston, it appeared to be paid by my regular medicare/supplemental plan. I haven't received a bill yet, if it changes, I will let you know.

Vitamin D, calcium and creatine levels have to be in normal range. It is also important to drink lots of water day before, few hours prior and after infusion. The medication is processed by kidneys.

Following the infusion, I had one day of severe bone pain that resolved over a 3 day period, mild nausea and headache. The few days of flu-like symptoms were much preferable to the pain my Mom endured from her falls and surgeries. My Grandmother also had stress fractures of the spine.

[gwillistexas in reply to Luciv]

Thank you so much. 😊

[iagra]

After having osteopenia for many, many years, I finally crossed the line into osteoporosis in my spine. My doctor offered to take drugs, if I wanted to take that route. But, I decided to continue taking calcium supplement and vitamin D. I do moderate weight lifting and go for daily walks. I normally do dexascan every other year, but, this time, my doctor wants me to repeat the test this summer (one year since last dexascan).

Good luck!

[gwillistexas in reply to iagra]

Thank you. It’s nice to hear that a dr “offered” instead of giving no choice. My cut d leaves are normal but I decided to up my dosage and taking magnesium as well. I get my calcium in my daily vitamin. I’m willing to do anything to stay clear of the drugs. Have a great day!😊

[gwillistexas in reply to iagra]

Sorry...”vit “ d

[gwillistexas in reply to iagra]

Don’t you just love autocorrect 😂

[iagra]

Yes, me too, I don't want to take any drugs, unless there is no other way.

[LStonelli]

I was just prescribed Boniva for my Osteoporosis, I am assuming it is safe with PBC!

Recently broke my neck after a fall, I blame it on the heavy dose of omeprazole I had been taking for at least 5 years. My concern is since my hospital stay a month ago my ALP has gone up 40 points........ I assume it was from all the drugs they gave me when I was hospitalized.

My advice to others is to take as little drugs as you can!

Laura Stonelli DX 2010

[gwillistexas in reply to LStonelli]

Sorry to hear about your fall. Hope you are much better now. I’ve been trying to research all those drugs. I’m cautious about any of them. For now, I will continue with magnesium and vit d3, calcium and k2, and be very careful. We have another member here that doesn’t post hardly, that fell and broke her femur. She had surgery yesterday and seems to be doing okay except for pain. We are fragile in many ways. God bless and take care. 🙏🏻😊

[LStonelli in reply to gwillistexas]

Thank you for you reply and concern!

Love to hear more about your journey with PBC.

It seems never ending, I can’t remember the last time I felt good! Always something, it is getting harder and harder to cope!

Take care of yourself...... I have decided not to take the osteoporosis drug, I am afraid it will cause more problems after reading the side effects!

Laura

[gwillistexas in reply to LStonelli]

You’re welcome. I will send pm later 😊