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Bloom
02-17-2015, 10:40 PM
Helle everyone, I am hoping someone can give me some advice re osteoporosis drugs. Although I have only recently been diagnosed with Wegener's/ Churg Strauss a DEXA scan showed osteoporosis in my lumbar spine 2 years ago, I already had it in neck of femur. I have had inhaled steroids for asthma for many years, I have a genetic predisposition and I have a parathyroid adenoma which is also a contributory factor.

I have been on varying doses of prednisolone since December, so my GP has referred me to a rheumatologist, whom I've already seen, before I had this diagnosis. I know I'm going to be given drug treatment which I don't want. I've tried biphosphanates which I think started my problems with reflux. I also tried strontium for three months over a year ago and I had lots of crazy ectopic heart beats on it.

I have researched these drugs and the evidence for use doesn't seem great, I also think if they are stopping breakdown of bone, how do you get new bone, which is an ongoing process. I regularly do exercises to build my core strength and balance exercises, I walk a fair amount, me and the dog:biggrin1:.

My vasculitis Dr suggested them, but when I said no, he didn't push it. Also my personal theory is that DEXA scans only show density not tensile strength. I don't know how to manage this rheumatology appointment without annoying the Dr.

I would be appreciative of any advice even if it's just to tell me I'm a numty. :biggrin1:

mb

drz
02-18-2015, 12:39 AM
All of our drugs have risks or side effects it seems. These should be discussed with you and if you don't like the choices offered it is always good to seek out a second pinion if time and resources permits. One of the GPA centers of excellence is a good place to start if you can swing it. Some times they are more up to date on the latest and best techniques to treat any problem and can offer another alternative that you might find better for you. I know that is why many people in my area and myself go to Mayo or seek out referrals for other second opinions from another doctor who might have more experience or expertise in an area of our concern.

Debbie C
02-18-2015, 04:49 AM
My dr. at CC wants me to go to a dr. about my ostereoporsis since my lower spine is getting worse each year. She suggested I get a shot that will last from 6 mos. to a year since I have espohgsis (sp ? ) issues,instead of taking another pill. But like you ,I am not crazy about the side effects and once given a shot there is no taking it back,with pills if there is a problem I can always stop taking them. I have an appt. next month so I can let you know then.

LisaMac
02-18-2015, 06:33 AM
Am I the only one who gets a Reclast infusion every year?

kaysee
02-18-2015, 09:26 AM
Lisa, is reclast for osteoporosis?

LisaMac
02-18-2015, 09:44 AM
Yes, i think it works by helping your body build bones.

Jaypfei
02-18-2015, 10:22 AM
I have less than 90 days left of a two year dosing of Forteo. I take a 20mcg shot every day. I first took once a week Fosamax but couldn't deal with the upset stomach issues that it caused. Then Dr suggested this Forteo. Supposedly its a biological that helps build bone and after the 2 year dosing period I shouldn't ever have to take another Osteo medication. Other than elevated ALP, I've had no issues, however with all drugs come risks. I felt this was a better option than a weekly/monthly pill or yearly IV.
I can certainly understand your apprehension. I won't have another bone density test till next year. I guess the proof will be in the scan as to whether or not this drug has helped. I did recently have a scan on my hip joint and can report that it was a-ok.

Debbie C
02-18-2015, 02:05 PM
Am I the only one who gets a Reclast infusion every year?

I never heard of it but I really haven't done alot of research on different meds...just what I see advertised on t.v. I was going to see what he suggests and go from there ,but again I am not good with meds so I am really not big on getting any shots or infusions. Have you had any side effects from it and how long have you been getting those ???

LisaMac
02-18-2015, 02:11 PM
No side effects that I have noticed. I go in once a year, have a half hour long infusion, drink a lot of water, and that's it. It seems to be working so I don't argue when my doc suggests it.

jvilner
02-23-2015, 07:44 AM
I also get the yearly infusion. A day later I feel like I have the flu for 2 days and then some tolerable lingering symptoms for a week afterwards. But it's better than suffering from GERD!

mrtmeo
02-23-2015, 11:00 AM
My mom was on inhalers for years and had bone density loss on a bone density scan in 2007.
I gave her prunes about 7 per day for 3 months and her next bone scan 2012 showed bone density improvement.
I now, give her boron, but she has not had a scan since to verify.
Here is a study on prunes reversing osteoporois.
Viewpoint: dried plum, an emerging functional food that may effecti... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19274852)

No side effects that my mom noticed and it kept her regular.

drz
02-23-2015, 04:53 PM
My mom was on inhalers for years and had bone density loss on a bone density scan in 2007.
I gave her prunes about 7 per day for 3 months and her next bone scan 2012 showed bone density improvement.
I now, give her boron, but she has not had a scan since to verify.
Here is a study on prunes reversing osteoporois.
Viewpoint: dried plum, an emerging functional food that may effecti... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19274852)

No side effects that my mom noticed and it kept her regular.

Prunes should be safe and might have other benefits too for people. I wonder if stewed prunes would be just as beneficial too.

mrtmeo
02-24-2015, 05:30 AM
Prunes should be safe and might have other benefits too for people. I wonder if stewed prunes would be just as beneficial too.

I did stew the prunes back in 2012 when I gave my mom prunes for her osteopenia because she doesn't like to wear her dentures.
It is the boron content that seems to have the effect on the bone density and it is a mineral that is not damaged by the heat of cooking.

The only problem with eating that many prunes per day is for anyone with bad kidneys due to the high potassium.
I use boron for my mom now, due to her low kidney function.

drz
02-24-2015, 04:28 PM
I did stew the prunes back in 2012 when I gave my mom prunes for her osteopenia because she doesn't like to wear her dentures.
It is the boron content that seems to have the effect on the bone density and it is a mineral that is not damaged by the heat of cooking.

The only problem with eating that many prunes per day is for anyone with bad kidneys due to the high potassium.
I use boron for my mom now, due to her low kidney function.

Many of us do have kidney damage so eating that many prunes might be dangerous for us, right?

mrtmeo
02-25-2015, 10:25 AM
Many of us do have kidney damage so eating that many prunes might be dangerous for us, right?
Yes.
I give my mom boron instead.