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View Full Version : Thoughts on Bisphosphonates



Sangye
07-22-2009, 08:28 AM
I often see people just beginning Wegs treatment being put on Fosamax (alendronate), or some other "bone-protective" drug in the bisphosphonate family. I encourage you to really grill your doctor about this. Putting a patient on these drugs shouldn't be a knee-jerk reaction. Yes, pred causes bone loss. But not everyone will be at very high doses for the length of time it takes to cause serious loss. I question this automatic use, especially for men.

Bisphosphonates are hardly benign. The risk of atrial fibrillation is increased by 50%. The odds of one of their most serious risks-- osteonecrosis of the jaw-- is increased by taking pred. They don't "protect" the skeleton. They inhibit the bone-destructive cells (osteoclasts). Unless you also stimulate bone production, the end result will still be weaker bones. Their efficacy is highly questionable: The studies showing Fosamax as a miracle drug were both funded by its manufacturer--Merck. No one knows the long-term effects of taking these drugs, whether concerning safety or efficacy.

Everyone should have a bone density screen within 6 months of starting pred. Sooner, if you're already at high risk for osteoporosis. If the 6-month screen shows minimal loss, it's routine to wait a year and repeat the screen before considering any drugs.

I began with "supernormal" bone density. I was also on Lovenox (heparin) injections for 2.5 yrs, which cause major bone loss--way more loss than pred will in the same time. I have to do a screen sometime this year, but my Wegs specialist is not concerned. The last test showed some decrease, but even with pred + heparin, the sky was not falling.

Please don't interpret this to mean that osteoporosis is not a serious risk to those on pred. It can be.

Weggies who've been on pred for decades probably don't have any choice at this point. I'm mostly aiming this suggestion at those who are new to treatment, or not at high pred doses : Get a yearly bone density screen and if a doctor wants to use a bisphosphonate, get several opinions, including at least one from a holistic doctor about the feasability of using alternatives.

(And BTW, Weggies do have one factor working in their favor. Being overweight means more load on the skeleton, which stimulates bone growth. Skinny people have much higher rates of osteoporosis.) :D

crackers
07-22-2009, 09:08 AM
sangye i've been on alendronic acid for just over 2 years now.i had a bone scan about 6 months in which was ok.i did google it at one time and some of the side effects are a bit scary but i've not had any problems so far.
john.

Terri
07-22-2009, 01:05 PM
Oh Sangye, I asked that very same question "while you were gone".
My doc wanted to put me on Actonel or Fosomax. He was letting me decide.
I was on Fosomax when first diagnosed for about 6 months and it was causing stomach issues so I had a bone density test and everything was fine. So I haven't taken anything for over a year.
Now they want me to go back on something and I just don't want to.
I've read reviews from people taking Actonel and 80% complain of muscle pain.:eek: I certainly don't want that. I know about the jaw and throat dangers with Fosomax.
My question is: could we do better with our diet to compensate for calcium loss or whatever it is that the meds take away from us?

Jack
07-22-2009, 04:29 PM
My bone density scan gave me a score of -5. The scale only goes to -5 as far as I'm aware! Oh dear. :(
I have to be very carefull not to fall down for fear of fractures and I've broken ribs on several occasions without even trying. However, I elected to only take the usual Calcium and vitamin supplements on the basis that I'm suffering from too many drug side effects already. I don't know if this was the right decision or not.

Luce
07-22-2009, 08:16 PM
I've been taken off of alendronate by my respiratory doctor.
He was worried that it would add to my fertility problems amongst other things so requested a bone scan. I too have super normal bone density so he wrote to my renal doctors and insisted I stopped taking it until bone scans showed a significant loss. My renal doctors weren't happy as they felt it was a good preventative against bone losss but I argued that I would rather risk losing a little bone mass than take another pill which might be doing me more harm than good.

I guess the reason for my supernormal bone density is the fact I have always been significantly overweight. Woo, being overweight may have actually helped me for once!

fester500
07-22-2009, 08:52 PM
I was also taken off bisphosphonates after a month or so. A different doctor to the one who prescribed them was very alarmed when she saw that I had been put on them. She said that I was too young (21) and was worried about potential harm to future babies. My understanding is that although they don't know for certain that the bisphosphonates would cause harm, they don't know for certain that they don't. The drugs hang around in your bones for a long time and there haven't been many (or any?!) long-term follow-up studies.

I am now back on 2 calcichew d3 forte tablets daily. But because DEXA scans still show 'high fracture risk' osteoporosis in my spine I might have to try out the bisphosphonates again sometime. But so far, no fractures!

coffeelover
07-23-2009, 05:59 AM
Sanye,

I knew there was a reason I wasn't skinny!

Doug
07-28-2009, 04:52 AM
Hey, by midwestern standards, you barely are more than skin and bones! :p

Jack
08-02-2009, 12:38 AM
Bit of an update on my decision not to take Bisphosphonates.

I saw the Rhumy at my local hospital yesterday - the one who has organised my bone scans in the past and has an interest in Vasculitis. He was quite alarmed at my decision not to take my once-a-week Bisphosphonate tablet and said that I really did need it. He offered me a once a year infusion instead which would free me up from taking more pills and I decided to go with him on this. However, having read up on the subject, it seems that the intravenus infusion methed has an even higher incidence of serious side effects!

I think I will have to start taking my medication, but will stick with the once a week pill. :(

Doug
08-02-2009, 01:29 AM
Good for you! If you can do it, there's no excuse for the rest of us not to do as much. Hope it works out for you. Your other post sounded so good, I'd hope this latest medication development doesn't compromise your "new normal".:)

Sangye
08-02-2009, 01:37 AM
Jack, I don't think you have other options at this point. I hope it works well for you and if you have side effects, I hope they're minimal. :)

jola57
08-09-2009, 01:49 AM
Jack, I'm glad you rethunked (is there such a word)and are taking the supplement. As bad as the side effects, you definitely need it. Eating more foods rich in calcium will not help as it is all about absorption into our bodies and the amounts we need simply woul not be enough in the food we eat.

GeorgiaInOhio
08-11-2009, 01:09 PM
Jack, I hope everything goes ok and your side effects are at the bare minimum. :(

I was immediately put on the fosomax when I left the hospital, was just told I had to take it or my bones would deteriorate. At my appointment with my cardiologist last week, he asked me why they put me on that, and told me to stop taking it. He said there was no reason to take it now, and after 6 months would be the time to re-evaluate it. Now I know why. He did say that the Calcium SUPPLEMENT Im taking, along with Vitamin D would be sufficient enough to make up for the fosomax. He did also say that I would need to keep taking the Supplements because I wouldnt get enough from food. Although he thinks its great i eat alot of plain yogurt and drink milk, because every little bit helps.
So I dont know why they put me on it. I guess protocol from the little medication team, but I didnt need it. I only had been on it 2 weeks, but I do think it was causing alot of my acid reflux and stomach problems, which he said it would. Im glad you posted this sangye, I didnt know this was something else that everyone is just dealing with. Wow, i learn we are all so much alike in so many ways. I love you guys....

i must be getting tired, im getting gushy. :D

jola57
08-11-2009, 01:23 PM
Georgia the feeling is mutual, we all have this love x-triangle going on:o

Sangye
08-11-2009, 11:59 PM
I think it's because the deepest connection you can make with others is to feel empathy.

That, and you guys each have a darn good sense of humor. :)

Sangye
09-05-2009, 08:13 AM
Interesting article (http://www.nytimes.com/2009/09/03/business/03drug.html?pagewanted=1&_r=2&ref=health) about the ongoing court case against Fosamax.

jola57
09-10-2009, 10:41 AM
Interesting, I wonder what the ruling will be. Devil if you don't take it and devil if you do. I have been taking once a week for a year now and have not noticed any changes, but don't know if not taking it would have mattered in my bone density.

pberggren1
09-15-2010, 11:48 AM
Has anyone heard the news today about bisphosphonates?

If I heard it correctly anyone taking them long term, 5 or more years is at risk of getting a leg fracture that is hard to heal. It breaks strangely and wont heal normally.

drz
09-15-2010, 11:54 AM
Interesting article (http://www.nytimes.com/2009/09/03/business/03drug.html?pagewanted=1&_r=2&ref=health) about the ongoing court case against Fosamax.
So should we stop taking it? How many others here are using it?

pberggren1
09-15-2010, 11:57 AM
So should we stop taking it? How many others here are using it?

I will talk about this with my doc when I see him on the 23rd. He said before that he is for me taking it.

Sangye
09-15-2010, 12:07 PM
Holistic docs have been saying this since the drugs were approved. Bisphosphonates are incorporated into the bone matrix, so where you would normally have bone, you have a manufactured drug.

elephant
09-15-2010, 12:08 PM
My weg specialist and local rheumy wanted me to take it again, but I said ,'
"No." I took it for seven months and I think it caused more facial pain and that is what I told them. They understand but worried I will break bones in the future because I have osteopenia.

pberggren1
09-15-2010, 02:25 PM
I think I will quit it again and just up my Calcium from 1000mg to 2000mg. My doc may not agree but then again I have never found a doc to agree with me on everything, especially this kind fo stuff.

Jack
09-15-2010, 06:31 PM
I don't think upping the calcium is a good idea. It only helps if you have a low natural intake and has been associated with heart problems.
There are no free tickets around here! ;)

pberggren1
09-15-2010, 08:25 PM
I don't think upping the calcium is a good idea. It only helps if you have a low natural intake and has been associated with heart problems.
There are no free tickets around here! ;)

Damn!!! I was told there were free tickets here. Now what do I do.:crying:

Jack
09-15-2010, 08:36 PM
Living with adversity is character building. Become a character! ;)

Sangye
09-15-2010, 10:39 PM
Phil, don't stop your drug without telling your doctor. Some drugs have to be stopped slowly or you can cause problems.

Building bone is much more involved than just taking calcium. Lots of nutrients are involved and they all have to be balanced or it upsets the entire process. You really should see a holistic doc to get this addressed. It's more complicated than I can explain on here and is highly individual. There's no "one-size fits all" to it.

No free tickets, and no one-size fits all.... :flapper:

JanW
09-16-2010, 01:35 AM
I'll ask my doc about this at the next visit also. I've only been taking it since dx, but since my osteoperosis is rather severe, I'm still fairly young and the numbers are being monitored and increasingly pointing in the right direction, I'm guessing that I should stay the course.

pberggren1
09-16-2010, 02:42 AM
Phil, don't stop your drug without telling your doctor. Some drugs have to be stopped slowly or you can cause problems.

Building bone is much more involved than just taking calcium. Lots of nutrients are involved and they all have to be balanced or it upsets the entire process. You really should see a holistic doc to get this addressed. It's more complicated than I can explain on here and is highly individual. There's no "one-size fits all" to it.

No free tickets, and no one-size fits all.... :flapper:

Thanks Sangye. I will stay on it for the next few months then until I can see a Naturopath doctor.

germaine
10-12-2010, 01:55 PM
Hi Sangye. i have been put on actonal (generic version), Fosamax gave me hives. I had a bone scan and it showed amber for my hips, but the rest of my bones were OK. I feel really mixed about taking this stuff. I am on 1000 mg of calcium and vit D. I eat a lot of cheese. I am 71, what do you think? Can a get away without it. I think my bones likely eroded when I was on the high dose pred, but now I am at 8 and hopefully after I adjust to the Methx I will be trying to reduce that some more. How long do the leave you on the Methatrexate usually, is it forever, or do they wean you off that after you get the pred down? I continue to be amazed and grateful that I can gulp down all this stuff without too much reaction except for the fosamex.

Sangye
10-13-2010, 12:18 AM
Germaine, it's impossible for me to tell if you need actonel at this point. My suggestions are aimed at younger people whose bones are in good shape, and are being given bisphosphonates "proactively." If you already have osteoporosis, you have to make the decision with your doctor. It may be unavoidable.

I would suggest getting a vitamin D level checked in your blood work. Most people take way too little vitamin D and it's even more crucial to your bone density than calcium. I get mine checked on a regular basis. To give you a reference point, I'm taking 8,000 IU vitamin D of an excellent quality brand (ie not OTC).

Cheese (and other dairy) is not a great way to absorb calcium. Look up calcium-rich veggies and load yourself up with them on a daily basis. They also happen to be anti-cancer foods.

Finally, if you are able to do any weight-bearing exercises that's the best way to build and maintain bone density. You can also find info on this online. As a chiropractor I used to tell my patients "Keep moving and use your body." Carry groceries, stand up to fold laundry, etc...

pberggren1
10-13-2010, 05:24 AM
Sangye, is Carlson a good brand of Vitamin D and Cod Liver Oil and other supplements?

Sangye
10-13-2010, 05:43 AM
Phil, I don't recommend taking cod liver oil (any brand) on a regular basis. It's too high in vitamin A, which boosts the immune system. Even for a non-Weggie, it's easy to get too much vitamin A using cod liver oil. A non-Weggie could take it a few times a week and be fine.

It's much better to take regular fish oil supplements, which use the body of the fish and not the liver.

I don't consider Carlson to be a good source of either. It's an OTC brand and doesn't have the same standards as those sold by health care professionals. Until you can get to a holistic doc, I suggest you continue taking the vitamin D, though. Ask your doc to measure your blood levels so you can determine how much to take.

Sangye
10-15-2010, 08:46 AM
News on bisphosphonates today:
Bone drugs may cause fractures, FDA warns – The Chart - CNN.com Blogs (http://pagingdrgupta.blogs.cnn.com/2010/10/14/bone-drugs-may-cause-fractures-fda-warns/?hpt=T2)

elephant
10-15-2010, 10:57 AM
Thanks for the info Sangye. I have been bothered by both my WG specialist and Rheumy to take the bisphosphonates , but I only have oestopenia. I refuse to take it. I actually felt worse taking it my face sinuses felt worse.

Jack
10-15-2010, 07:02 PM
Thanks Sangye, I'll add it to the list of side effects that I can do nothing to avoid. :sad:

Sangye
10-15-2010, 11:29 PM
I'm sorry, Jack. I know how frustrating it is to have things like that. But like any of the other risks we live with, this isn't guaranteed to happen. You don't dwell on the other things, so hopefully you can put this one in the same mental filing cabinet. :hug2: