Fosamax (Alendronate) Question

[montebello]

Hi again,

I'm a GCA patient that was diagnosed in AUG 2022, started at 60 mg PRED and finally down to 20 MG after 7 months. I was a previous PMR patient about 8 years ago as well, having taken about 6 years to decrease the PRED to zero. At my most recent rheumy visit, he suggested that I start taking Fosamax to protect against osteoporosis. I thought, at the time, that it was strange that he wanted to start me now that I'm down to 20 MG PRED, but didn't challenge him. He's not the type to challenge.

Well, after taking 3 pills over 3 weeks, I'm feeling the effects. Stomach issues, occasional diarrhea, more bloating, and in general just plain blah. After 7 months of dealing with the severe fatigue and eye problems (puffy eyes, blurry vision), I don't want to deal with even more side effects unless it's absolutely necessary.

I had a Dexascan 2 years ago (after the PMR ended). T-score of the spine was 0.6. T-score of the hip was -1.9. I asked the rheumy if he could prescribe another Dexascan to see what changed after being on such high doses of PRED since AUG, but he said "it would not matter, that I need to go on Fosamax no matter what the Dexascan showed" and so he's not willing to prescribe it.

Is this true? If my T-scores don't change, even after such high doses of PRED, wouldn't that mean that I might not need to be on Fosamax?

BTW, he said that if I didn't like fosamax he could prescribe Prolia shots. When I looked up Prolia shots, I said to myself "uh, I'm not sure I can trust this rheumy."

Thanks, as always, for being there!

[piglette]

I must admit if I had Dexascan results like yours there is no way that I would take a bisphosphonate such as Alendronic Acid. You do not have osteoporosis. My GP keeps saying I should take it as it seems to be on some tick off list he has got from somewhere, even though my results are really good. We just argue every time we talk.

[Bcol]

Must be my morning for agreeing with Piglette. Is their anyone else you can see who will allow/prescribe another DEXA scan?

[montebello in reply to Bcol]

If this rheumy will not prescribe the dexascan, I'll go to my GP. He might. Thank you

[SnazzyD]

Can you ‘buy’ a DEXA scan yourself? I’d certainly not be taking AA without evidence. I lost 3-3.5% after taking Pred for GCA from already being osteopaenic at the start. Still osteopaenic. If I go on Pred again I might be in trouble but will address that if it happens. It would be good to know where you sit at this stage or at the 3x year mark.

[montebello in reply to SnazzyD]

Thanks Snazzy. I'm not sure whether or not I can pay for it myself. I'll look into it if I can't get the prescription.

[PMRpro Ambassador in reply to montebello]

There are centres that do them privately - where are you?

[montebello in reply to PMRpro]

USA -- Virginia

[PMRpro Ambassador in reply to montebello]

In that case - bound to be place where you can pay for one.

[DorsetLady PMRGCAuk volunteer]

Although I took AA for 4 years [for valid reasons] with no issues - it’s not something that should be embarked without very good reasons… so no, until DEXA shows it necessary…

[montebello in reply to DorsetLady]

Thanks DorsetLady. As always, your comments are appreciated

[PMRpro Ambassador]

I had slightly better t-scores than you before pred 13 years ago - at my last dexascan after over 11 years of pred, most of it at above 10mg, the t-scores were little different. I agree it is a bit of the closing the stable door after the horse has bolted and his unwillingness to discuss a dexascan is concerning - to me at least.

Prolia is no worse but there are options between Fosamax and Prolia. There are annual infusions of two bisphosphonates for a start. If you take Prolia you either need to take it for life OR you switch to a bisphosphonate of some sort to maintain the improvement in bone density that Prolia achieves. The problem is that when you stop it, there is a massive rebound loss of bone density in the first few months which puts you at risk of spinal fractures - exactly what they wanted to avoid.

[montebello in reply to PMRpro]

PMRpro,

Thanks as always. Prolia does not sound like something I'd want to consider, unless I'm in dire straits with my T-scores.

BTW, I've read all the posts on this forum that I could find on this issue, including the FAQs. You (and the others) must be tired of answering the same questions over and over But thank the Lord that you do!

[PMRpro Ambassador in reply to montebello]

That's why the FAQs were compiled - now we just have to get people to look there first!!!!

[Lafontainepam1]

Be careful with taking Fosamax I lost 4 of my back teeth while taking that! The oral surgeon said people should be advised about it. I will Never take it again! And I wasn’t on it long!

[montebello in reply to Lafontainepam1]

Gees. I know that Fosamax has its downsides -- and what you experienced certainly is a downside. I guess it's a risk/reward type of thing. If I really need it, I'm willing to take the risk. But at this point I don't know if I do or not. Thanks for sharing.

[ncfaaeos]

I took Predenisolone for 26 months when I had PMR in 2018-2020. I was also prescribed AA but it gave me lot of bone pain (shins) so I decided to stop takíng it (a DEXA scan at the time showed only very slight osteopenia). I was also offered AA infusions but refused them as I was afraid that they too might give me bone pain and there would be no way out. Last year, I was diagnosed with GCA and was prescribed Prednisolone again (will stop taking it in June, all being well). I had another DEXA scan recently, which showed no change in my readings since the previous scan. I wish you all the best.

[montebello in reply to ncfaaeos]

Thank you so much for relating your experience. It helps greatly. All the best...