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Anyone take Fosomax for steroid-induced osteoporosis?

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Posted 7/8/2021 9:27 AM (GMT -5)
I have my second foot stress fracture in a year and a half from simply walking. I used to be an ultramarathoner and long-distance hiker and never once had a single stress fracture my entire life before recently. My GI recommended I take Fosomax. I've done a lot of reading online about it and am not super thrilled to try it. I need to do more reading, but wondered if anyone here took it and if so, did it actually work to prevent future stress fractures or other fractures...? I am very confused because one sports medicine doctor I saw told me conflicting information. He told me foot stress fractures are rare from osteoporosis but he also told me to take Fosomax.

I would like to get back to running someday or at the very least hiking and going on walks consistently. I had been building up very slowly so this isn't any kind of typical overuse injury. I was barely even doing much at the time of the injury because my UC had flared up. I was on high-dose pred both times I got a stress fracture. I am back on Uceris at the moment and still waiting to see if Xeljanz will work.

PSA: Avoid long-term steroid usage as much as possible!!!
Posted 7/9/2021 10:42 AM (GMT -5)
I hear you about the steroids. They are terrible for the bones, I have experienced this.

In my research and talking to a lot of osteo communities online, the bisphosphenates make the bones worse over time, not better. The artificial structure fosomax creates is not as strong as original bone and makes the bone more prone to fracture over the lifetime.

Some recommend strontium but apparently it only strengthens bones while you take it. Then when you stop taking it, the strontium leaves the body and leaves "holes" in the bones where it once was.

The best way to improve bone density is with a protocol heavy in magnesium, boron, and sufficient vitamin D and retinol (active vitamin A) to metabolize it all. We get most of the calcium we need from diet already. Boron tells the minerals where to go.

You also have to start weight bearing exercise. Nothing crazy but enough to put a bit of stress on the bones. Some people just wear a weighted backpack or arm/hand weights everywhere.

If you're still on steroids, then that will reduce the effectiveness of this protocol, but not stop it completely. Your signature says you're steroid dependent -- what does that look like?
Posted 7/9/2021 1:57 PM (GMT -5)
I agree with VJ about Fosamax. I also agree about the magnesium, boron, and getting your blood levels of vitamin D measured.

I may not agree that we already get enough calcium. I think a lot of people are afraid of calcium because too much can form plaque within your arteries. Vitamin K2 might help since it removes the excess calcium from your arteries and moves it into your bones.

I take about 5,000 IU of vitamin D/day and about 200 mg of calcium and about 250 mg of magnesium. Since women are more prone to osteopenia then maybe they should take a higher dose of calcium.
Posted 7/9/2021 3:40 PM (GMT -5)
Sara14, I agree with VJ and IAC in that I'd personally avoid taking Fosamax. Someone I know had side effects from it, including jaw problems, that I'd rather avoid.

I hope you get some improvement with Xeljanz. I think I already mentioned I'm at the end of the first 8 weeks and staying on 10mg twice a day because I'm not close to remission yet. My faecal calprotectin has halved from about 1200 to 600ish, so there's definitely been progress, but I still get 8 to 14 bms on some days. Weirdly it's mainly the days I'm working from home that it's high, so I'm trying to figure out why this is. It's probably because I buy lunch when I'm at work and make better choices. At home I'm too busy to cook lunch so I just grab whatever I can.

For the benefit of others reading, I reversed hip and spine osteopenia by walking uphill on a treadmill in my local gym with a weighted backpack. I'd just take a rucksac with me, and put one of the hand weights from the gym into it.
Posted 7/10/2021 4:21 AM (GMT -5)
I forgot to mention something important in my last post (sorry, I was tired), that I take DHEA and pregnenolone daily while I'm on prednisone, and this prevents some of the gnarly effects of pred and preserving some bone density. DHEA has a really good track record for this, especially in women. So you may want to look into that. It's safe at lower dosages (25mg or less). Pregnenolone is super safe and there isn't any recorded issue with it that I have found in my research. They used to give IBD patients pregnenolone in high doses before prednisone was invented, back in the 1940s. I take 50mg pregnenolone daily. I have found pregnenolone especially useful for getting off pred.

Our bodies naturally make DHEA (5mg/day roughly) and pregnenolone but when you take pred the body stops making them. You can see a diagram here:
https://i.pinimg.com/originals/f2/1e/53/f21e531325216c6a712acb46452cde32.png

Prednisone replaces the cortisol pathway, but once you take high doses of pred, the entire hormone cascade goes offline, even the stuff not related to cortisol... like testosterone, estrogen, DHEA, etc. That's why I supplement them.

Doctors always try to put me on 60mg of pred (IV or oral) when I flare and I can't tolerate it. I become extremely underweight really fast on those dosages, and start losing bone mass like crazy. 40mg is my max, and I can't tolerate it for long, usually only a few weeks. If I don't take DHEA and pregnenolone, my body suffers widespread damage. If I didn't use these, I'd probably have bone fractures by now.
Posted 7/10/2021 7:45 AM (GMT -5)
I would not take Fosamax based on GI recommendation — I think that’s old school at this point.

If you can, you should consult with an endocrinologist who specializes in osteoporosis. Depending on where you live there are some doctors out there who specialize in bone density issues — they are usually endocrinologists.

My husband has been receiving a prolia injection annually to reverse the steroid-induced osteoporosis. He probably has one more year to go. Endocrinologist also put him on Vitamin D3 1000 mg a day and calcium supplement — both over the counter.

Even though the GI had ordered the initial bone density scan years ago now, it was the endocrinologist who recognized that the radiologist had misread the scan and missed the osteoperosis. GIs understand the risk of steroids and osteoperosis but they don’t have the expertise to manage that condition.



No issue taking the prolia with the Xeljanz if you continue.
Posted 7/10/2021 8:14 PM (GMT -5)
Thanks all. A GI and my sports med doctor/ortho both prescribed Fosomax for me. The ortho dr regularly manages osteoporosis. I don't have it in me to see yet another specialist right now.

I already take all those supplements mentioned above and have been for 2ish years now. Vit. D levels are normal with the supplement. It's 5,000 IU. I'm vegan and definitely didnt get enough calcium through my diet. I've been supplementing for 2ish years now. I wish I had years ago.

Will definitely research this med more before taking it. I really don't want to take it. But I want to be able to hike and walk without breaking my foot again, too.

I'm only giving Xeljanz 2 months. No more. I'm over this 2-plus year scary drug waiting game and I'm done with the prednisone. Surgery next! I'm ready.
Posted 7/11/2021 10:20 AM (GMT -5)
Sara- what do you want to see in 2 months? You should see improvement within 2 months if Xeljanz is going to work, but complete remission could take a little longer.
Posted 7/12/2021 10:40 AM (GMT -5)

CCinPA said...
Sara- what do you want to see in 2 months? You should see improvement within 2 months if Xeljanz is going to work, but complete remission could take a little longer.

I guess I would need to ask my GI that question. We haven't really discussed that yet. He just said to give it 2 months. Xeljanz is supposed to be a fairly fast-acting medication. If not clinical remission, I would expect to see significant improvement, symptoms that are manageable for me to function without steroids. People on here talk about being dissatisfied with 3 or 4 loose BMs a day and that to me sounds great, so I'm not talking about 100% pre-UC perfection or something like that.
Posted 7/12/2021 12:09 PM (GMT -5)
If you've had improvement with Xeljanz after 8 weeks but maybe not to the level you were hoping for I'd agree that it's probably worth giving it a bit longer, unless of course you've had enough of trial and error.

As you know, this is the situation I'm in at the moment. My faecal calprotectin has halved from approx 1200 to 600 after 8 weeks of Xeljanz and no steroids, but my bms can be anything between 4 and 14. They're not extremely loose but also not fully formed.

Due to some bowel urgency my gastro thinks I probably still have rectal inflammation. I'm taking mesalazine suppositories and enemas but they don't seem to be making much difference at the moment.

So I've definitely had some healing on Xeljanz (without steroids) but it could go one way or the other. It's frustrating but I'm giving it a bit longer before I switch back to a biologic. Then if that fails I might go down the surgery route but would probably stick with a bag and not go for a J-pouch because if I have to have surgery I want to live my life without going to the toilet in the night, or 4 to 6 times a day!
Posted 7/13/2021 9:58 AM (GMT -5)
We'll see what happens. I hate taking Xeljanz. I stopped steroids yesterday. Empying your pouch 4-6 times would be a great outcome and is not that big of a deal from all I've heard and read. It's fast snd easy, like peeing, for most people. I'm already up at night to pee several times.
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