Osteoporosis med and sjogrens

I was diagnosed with sjogrens a few months ago. My symptoms are mostly dry mouth and digestive issues. I took Actonel for many, many years for osteoporosis. I had to get off it due to the length of time I was on it and because of my digestive problems. My endocronogist suggested Forteo, but the cost made it prohibitive. The next choice was Prolia. There are so many warnings about dental problems while taking it. I already have had some dental problems and am questioning if it is the right for someone with Sjögren’s. Anyone have any advise and/or alternatives treatments. I do exercise daily and take calcium and vitamin D. Thanks.

Hi Sunshine!

I'm in about the same boat, I could not tolerate the Alendronate, and even with insurance, the injectable alternatives are VERY expensive! I take the maximum amount of cal/mag and D3, and was thoroughly screened for any vitamin deficiencies, but none were revealed. So this is something I need to get back to my Rheum and Internist about.

I'll be interested to hear from others on this.

Hi Sunshine,
I’ve been on Premarin for quite some time. My rheumatologist did not say anything about getting off of it, I wi need to ask him about it. He is aware of all the meds I take. I’ve been on Premarin for about 10 years, as I had a full hysterectomy.
I also have epilepsy, so the amount of meds I’m on is huge. I know that the more meds anyone takes, the higher risk for side effects, and unknown reaction to each other.

I probably think differently on this subject. I think the osteoporosis meds have their place, but I believe we’re originally designed for extreme circumstances and are likely being used too often. The potential for jawbone necrosis seems too risky IMHO for SS patients, unless it is an extreme situation. My rheumie wasn’t even aware that vitamin K is now frequently discussed as vital for bone health. And the calcium in dairy…so much discussion if this is ideal. I have actually cut back my dairy calcium and increased my green leafy vegetables A Lot! It is more than just calcium, D and Magnesium…although those plus K seem to top the list. I like a supplement called Bone Up three a day. I take 2 a day with my doctor’s approval because my multi is so strong / comprehensive and my diet is so good. Doctors brush over the jaw bone necrosis possibility like it isn’t a big deal… I think we should do everything in our power to avoid those drugs and earnestly try: diet, supplements, whatever exercise we can muster. Just my humble opinion. BTW, I think Forteo has a black box warning. Some minor concern about bone cancer. Also, after you use Forteo, you have to use one of the other more typical meds too… Upping the potential risk for jaw bone necrosis. PS I also use a conservative dosage of bio identical hormone replacement that is compounded. I will not increase the dosage. I think this might help prevent osteoporosis.