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new doc - bone loss - want to stay on Evista??
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suggi1 posted:
I have been on Evista for about 12 years. I went on after a severe Crohns attack and on heavy dose of Prednisone for a year = 10.9% bone loss in spine. I also had a mastectomy for breast cancer in 2002 and Evista is good for keeping breast cancer away too, I had a friend who was not on anything and 15 years out breast cancer returned and she is dead so another reason to stay on Evista as there also I can not take the new BC drug and would be on nothing at this point. I started the Evista around the same timeframe.

Was getting scans every year and some years gained a little and some stayed the same or insignificant loss if any. Hip not as bad.
This time I skipped a year (scan) and my doc retired. I just had a scan and it showed insignifacant loss in hip but 3.8% loss in spine. Actually if you look at the picture scale going back all those years I am at about the same in my spine as when I was 73 as at age 74 I increased bone density (now 76). Do not believe these are T scores -not sure what is in the report I have not been great about taking my Evista for the past year as well as the Tums I take for additional calcium due to serious terminal illness in the family. Also I was told to take 2 30 mg Prevacid/day for excessive gastritis - one in AM and one in PM and have learn ed that the PPIs can cause bone loss. I was on 1 Prevacid for the 10 years and that did not seem to affect the bones so I stopped the 2nd Prevacid and am making sure I take the Evista every day now despite the ongoing problem. Also the written reoport says my bone density is normal for my age???? but high risk for fracture. Going to PT for bone building exercises.

I am scared the new doc is going to take me off Evista. I can not really take the other meds due to various reasons to me (lots of med allergies, esophagitis, prone to cellulitis and other infections, and do not want my immune system depressed with Prolia as GI doc retired also and if I get an attack it will be biologics for me as developed allergy to other Crohns meds - on Librium/Librax combo now or that.

Please if someone could advise me how to convince new doc I see on Sept. 2 that I can stay on Evista at least for another year to see if I level off. I did have a fall down a whole flight of carpeted stairs (17 steps) 4 years ago and did not break anything.(somehow rolled myself into a ball and just bounced my way down) and also slipped on ice under snow this past winter shoveling snow and did not break anything so the Evista must at least be making my bones stronger if not denser. Would this have any clout for my request?

Please if anyone could help me out with a suggestion before my appointment next Monday I would appreciate it.

I also read that the bisophanates increase bone density but it is brittle bone and you fracture more easily and that Evista does not build bone so much but makes what bone you have stronger. That must be true due to those falls I had with no breakage anywhere.Biphosphonate drugs.


Than you so much.

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bonebabe responded:
A couple of things come to mind.

First - you shouldn't be getting a DXA every year. Bone is very slow to respond to any change and a yearly test doesn't give you much info. UNLESS - you're still on prednisone. Prednisone is a high risk med as it really does a job on your bone density. That would warrant yearly scans. Otherwise an annual scan is a waste of money.

Second - The T-score doesn't indicate gain or loss. It's the BMD (Bone Mineral Density.) You can actually have a lower T-score than previously and have a great bone density. There's a formula that is done to detect change.

Now for the Evista dilemma. Stay on it. It's not going to hurt you and you have plenty of reasons for continuing the treatment. Age being the biggest. Your risk for fracture increases with age and you already said you were at high risk for fracture.

Ask your doctor or look at your report if you have it. Was a FRAX score given? It's pretty standard on computerized reports. It will give you a % risk for any fracture and for a hip fracture. Technically it's not to be done on anyone on medication or who's been diagnosed with osteoporosis as it's just another tool for determining need for medication.

If your all over fracture risk is greater than 20% or your risk for hip fracture is greater than 3%, you meed the standard criteria for medication.

Also if your T-score at any site (spine, hip or forearm) is at
-2.5 or lower or you've had a vertebral or hip fracture, you have a clinical diagnosis of osteoporosis and require medication.

Remember, your doctor doesn't dictate. He advises. If you want to stay on the Evista, tell him you're more comfortable and confident taking it. You can also get another doctor you might see to prescribe it - like your gastroenterologist, rheumatologist, gynocologist, etc.

Finally - I wouldn't be too concerned about not gaining bone density. What we look for is not losing. If you are at the same levels consistently, we declare you to be stable in response to treatment. That's a good thing.

As for the bisphosphonates making the bone brittle. Not. What they do is slow down the resorption of bone cells back into the body, thereby allowing your natural bone building process to catch up. Unfortunately as we age, the bone builders aren't quite as fast as the bone asborbers. That's how you lose bone density. The bisphosphonates equal out the mechanism.

Good luck with your doctor. If he doesn't listen to you and you're not at ease, find another doctor.

Let us know how it goes.
 
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suggi1 replied to bonebabe's response:
Thank you Bonebabe for your reply. I don't know how to read the report but it says for the spine under BMD L1 is 0.546, L2 is 0.583, L3 is 0.639 and L4 is 0.017. Then it says Total is 0.687????? Can you interpert that? Also the BMD change from 2 years ago is -3.8% but still I was lower at age 66 than I am now as inbetween I did gain some BMD here and there.

I just hate when you have to find a new doc. I already went through the "new doc" problem with my GI doc. Everyone who can is retiring - they say due to Obamacare. Oh joy lol.

The GI doc isn't happy with me and was making drug changes that I did not want but my old GI doc said to expect it so I guess I was just expecting the worst from the new endo doc. I got a note from my old endo doc before he left with my scan results and said because of the 3.8% loss in my spine he thought I should go on Prolia so guess I would have been arguing with him as well.
 
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bonebabe replied to suggi1's response:
No, I'm sorry I can't decipher your BMD. That is entirely subjective, depending on the results of a precision study done on the machine which measured you. If your place of study didn't do a precision study, there's no way to accurately determine how great a loss or increase you've had. The precision study determines the LSC, or lowest significant change. That is the number, above which any change is considered significant. Below that number, you're considered stable.

If you have osteoporosis and/or are considered a high risk for fracture you certainly need to be on a medication. What were your T-scores? It may be that Prolia would be a good choice for you now if your bone density is too low. You could do that for a couple of years, retest, then maybe go back on the Evista to maintain. Prolia won't compromise your GERD or Crohns as it's an injection done twice a year.

I know it's a pain to get a new doctor, but if you're not confident in your current one then you're not getting what you need. Your healthcare is ultimately up to you. You need to be proactive and informed - as you certainly seem to be.

Make the NOF website (www.nof.org ) your friend. Lots of info and questions answered there. Order their booklet "Boning Up on Osteoporosis" if you want something to peruse at your leisure or a quick reference.

And, yes, I certainly understand about Obamacare! I work in a hospital and it's causing doctors to leave and patients to stay away because they can't afford the huge deductibles or premiums.
 
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suggi1 replied to suggi1's response:
bonebabe
My T scores for 2014 were -2.6 for hip and -3.3 for spine.

I'm afraid to go on Prolia as I am allergic to all antibiotics except the cephlasporins and the levaquin family and the allergist said since I became allergic to all the others over time the same will happen with these two eventually as they are used. As a result I have to try to get over any infections I get on my own per the PCP unless I am dying. I even tried salt water soaks for a case of cellulitis but ended up having to take the Keflex as it was traveling up my arm. I also have a mitral valve prolapse and need antibiotics for dental work so you can imagine how often I go to the dentist. I need to save Keflex for emergencies like the cellulitis and pneumonia, etc. Prolia compromises your immune system and I am also prone to UTI's so am extremely careful about keeping that end clean and in the tub a lot if having Crohns problems to prevent a UTI which I was told is common when on Prolia...

The new endo doc wanted to put me on Reclast but kind of scared of that also - since I have a medicine allergy list that takes up 2 pages what happens if I am allergic to something in the Reclast as it is a yearly IV. Do I have reactions all year long?

She finally said she would let me stay on Evista one more year to see how I do but even if I am stable she wants to build bone not keep it stable. At my age I am happy with stable as opposed to getting something worse from the other meds. Guess I am just a scared puppy.

I really feel if I ever ended up in the hospital with all my allergies I would never come out alive. My best friend just died in the hospital and her daughter thinks it is because they use hospitalists now and you do not see the same on all the time. She was not allergic to as many things as I am but they seemed to not be able to keep things straight so how would I ever make out?
 
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bonebabe replied to suggi1's response:
Ask your doctor about Forteo. Your scores are very low. You're right - being stable is better than losing, but you're still at high risk for fracture. If your doctor agrees about the Forteo, you could do the Evista after the 2 year treatment.
 
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suggi1 replied to bonebabe's response:
Thanks for trying bonebabe - However, I am a doctors worst nightmare. Besides all my drug allergies I was one of those "experimental kids" in the late 1930's and early1940's where radiation/xrays were the new "cure" and they used unmeasured cobablt back then and the doc said I was born with an enlarged thymus gland and radiated my chest area and again when I was 8 years old to get rid of the scar tissue from the first radiation. I called the Forteo manufacturing company and explained it to them and they said DO NOT take Forteo under any circumstanvces. You can not use it if you had radiation to the bones/skeletal area. One doctor told me that cobalt was the cause of a lot of my illnesses and drug allergies as well as a deformed upper palate where I could never fit dentures if needed - and perhaps the reason I got the breast cancer. Many of those "experimental kids" are now dead from thyroid cancer 40/50 years later. Not sure if completely destroying the thymus gland has anything to do with my poor immune system. Before she died my Mother told me when the doctor found out the bad effects of what he had done he told her I probably would be dead by age 16 or if I lived I should not have children as they would be deformed. Well, here I am and I have 2 girls, neither one is deformed. Guess I am really one of the lucky ones.


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