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Avatar universal

Had my bone densitometry test, 6 wk post HEP TX (2 yrs since last DEXA)

My PA who ordered my bone DEXA scan (since I have osteopenia), had ordered it because it had been 2 yrs since my last one.  I had it done on Tues. and they called me today saying that my bone density had worsened and now I'm considered advanced osteopenia 'right before osteoporosis'.  They want me to come in to talk to her about further treatment, more aggressive treatment'.  My husband thinks that since I just had the 3 mon. of Sovaldi and SOC that it just made my bone density numbers off.  Which is entirely possible because on one of my clinical trials, the site was running another trial along side of the Hep C trial I was in.  Their other trial was to see if the treatments worsened bone density.  So they ran a baseline DEXA scan prior to my starting the treatment drugs and then, again after 30 days and again 1 month post treatment.  It did show a change for the worse with my bone density numbers being worse after 30 days.  That was about 6-7 yrs ago.  I've been getting DEXA scans every 2 yrs with having the osteopenia and with all these HEP C tx's I've done.  But, they've never called me up so concerned with this advanced osteopenia statement.  My husband thinks that I should just go with the increasing my vit D and calcium and then, having them recheck it in one year.  I'm inclined to agree with him because I'm only 53 and not really wanting to start on those bone building drugs this early.  They have side effects of their own.  Geeezz.  It's always something it seems.  I finally get undetected and then, had this dental visit and it required me having further gum treatment due to the advancing gum problems and now with the osteopenia bone density thing...   You would think that I never took any Vit. D, but that's not the case.  I took it all the way through my treatment.  Took it with yogurt (which they recommended because of the calcium in they yogurt). Eat almonds, eat eggs, salmon, etc., all those things are supposed to help Vit. D and build bone.    Anyway, I know that most of you 'new treaters' are doing interferon-free treatments and this may not be very interesting to you, but I did need to share.  Susan400
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Avatar universal
Must say the proverbial "When it rains it pours".  
Bone density..Hmmm
You may not want to go the Fosamax route so there are a few other ideas you may want to try.  As a personal trainer for the last 20 years I had bones of steel.  When liver disease took a hit at me I didn't work out for almost a year, at least the heavy weights.  To my surprise I was diagnosed with
The only way you can increase bone density is thru weight bearing excersices.  The vitamins and scripts for your bones can help to maintain your bones, but not increase density.  Should you not enjoy weight lifting, walking can help somewhat.  Any activity where your bones take somewhat of a pounding will work.  For additional walking benefit for the bones, they have a vest that's weighted that you wear for your walk.  They sell them at WalMart and you can adjust the weights to your comfort levels.  Just a heads up should you go this Ave, it can take up to 6-12 months to visibly see the benefits on a scan.
Stay well
Avatar universal

You may not believe me, but I work out all the time.  Literally, like I'm in the gym 5-6 days a week and sometimes even 7!  It's my whole social life since I don't go out to bars and can't get in the sun(from my skin issues).  If I could get in the sun-maybe this wouldn't have progressed, I don't know.  Anyway, I do about 10-12 of the different nautilus type of machines, do 35 min. on the elliptical/sometimes I do a second round for another 35..., I do the treadmill for 20-35 min. , do the stationary bike about 3-4 times a week.  So, I have been working out.  I even went to the gym about 5 times a week during the treatment!.  I had to slow down on some of my intensity on the cardio machines because of getting a bit winded, but I was still going there.  I haven't ever thought about that weighted vest thing, but that is an idea.  I've been going to this gym for about 7-8 years, regularly.  When the weather is cooler out, I do put on some long sleeves and pants, and walk outdoors and get some fresh air, to break up the monotony.  Anyway, I am just frustrated because I want to be feeling energized, full of energy, free of things wrong with me...     But, I am thrilled that for now I can say that I'm undetected.  That's something!    Who knows, if my bones get better, maybe my gums will improve in the process!  Susan400
317787 tn?1473362051
Hi Susan, I am so happy that you remain UND.  
The change in your DEXA results is puzzling.  I am inclined to agree with your husband that you should wait a year or even 6 months to get it done again.
I know how two treatments  affected me, you just finished number 11, not that I am keeping count or anything ha ha.
I had some beginning problem with my gums at one point after tx and my doctor asked me to be more aggressive with flossing.  So, I started flossing 2 or 3 times a day along with brushing and rinsing with Listerine  YUCK.
I also started using a water pick.
In two weeks my gums had improved so much there was no longer any need for the scaling on the one side like they had planned.

Of course I am not a doctor, just a fellow patient on here trying to be supportive.  I too have heard some things about Fosomax.  I feel very fortunate, I had a bone scan done 18 months EOT and I was in good shape.  Everyone says it was because I drank milk by the gallon, it also could be genetics.  My Mom has osteoporis.
I hope you can find some answers.  Take Care, Dee
163305 tn?1333672171
One comment about exercise is that in order to help build bones it's supposed to be weight baring exercise.

Susan. this treatment is hard on us and our bones. Don't think about what could have been. You're doing the right thing, eating well and exercising.

Good luck,
Avatar universal
Orphanedhawk is right as it has to be weight-bearing.
Fitness Tip for Osteopenia
The elliptical and the stationary bike are a non-weight bearing cardiovascular workout.  Your bones will not benefit from these routines.  They are fabulous for a Cardiovascular workout so do include them but perhaps place a little more emphasis on the Tread.
May also point out that with free weights you will derive much more emphasis on bone strength then machines.  If your gym has a knowledgeable trainer you may want to ask for advise with the dumb bells for bones.
Must say I'm impressed, thru Tx really?  I was lucky if I could make it outta the bed in the AM!
Avatar universal
I'm going to try to make sure I do at least 1/2 hour of walking on my workouts and as far as the free weights go I'm going to have to think about that one.  About all I can lift on the free weighs it 3-5 lbs and when I do the nautilus machines, I can lift 40.  I'm always fearful about doing the bar bells because I'm afraid I will drop them on my chest when I'm laying down on the bench, or on my feet when I'm lifting them over my head.  Susan400
1961140 tn?1450742312
Hello, The people who make the best bone mineral density building drug out there, Lilly, are pretty generous with financial help for Forteo treatments. If you have a long talk with your MD, make sure what your deviation in the Ward's scores are in specific areas. I would not be surprised if some localized areas are fully osteoporitic. Same situation happened to me, the overall Dx was osteopenia, but their were localized spots where the numbers were in the osteoporosis range. Either way, I never felt a thing during treatment as far as side effects, and from the literature I've read this a very well tolerated drug. My prospective spine surgeon insisted on Forteo, and this guy is the head of adult scoliosis surgery @ Johns Hopkins in Baltimore. That is saying something, they are even setting up an endowmen in his name. Please, gather up your financial info, and give the Lilly people a call. You might be surprised what they can do for you. I would urge you to get this treated, the sooner the better.
Avatar universal
hey, Dee is right about he teeth thing..

i have a little bone loss in my mouth and some receding gums. i have been getting my teeth cleaned 2x a year and floss a lot, brush 3 x a day usually, and  listerine i too avoided the scaling and gum work..

DX with osteopenia fall of 2011 and it was mild.i was shocked at 50 yo! i was on meds  for 6 years that causes bone loss...that caused it and of course i didn't know that was a side effect..my gripe with doctors.. i ask about side effects and they always tell me " there are none'

. just trying the calcium rich foods and supplements and since i cleared hcv a few months ago i have been a lot more active with energy and lifting heavy things..

i do not want to take the bone meds, i heard one of them can give you esophical cancer.i read this a year after my mom died of lung cancer that was high up by her throat… she took boniva!

.maybe that is why you are supposed to take it with lots of water and sit up for a half hour after taking..

so i am doing what i can.. will not do another dexa scan as there is no reason yet..

good luck! sue!

Avatar universal
I had my meeting today with the PA on my bone dexa-scan. She had me come into the office to discuss my results.  I don't really understand what a T-score means or a Z-score, but I suppose I'll have to read up on it more online.  She gave me this report with a whole bunch of numbers on it and measurements.  She said normally, she would put somebody with my reading on the bone drugs, but because I was just recently on the interferon that she would allow me to wait and in the meantime, she had me get another up to date Vit D level and will probably be increasing my Vit. D and add in some calcium. She will be rechecking that and have me redo dexa in 2 yrs, but it if has not improved or is worse in 2 yrs, then, I will need to begin the bone drugs.  And she stressed to increase my walking (even though I am already constantly working out), I am now going to have to add more walking to my normal busy working out routine.  It's not the end of the world, I know.  She did explain that an osteoporosis number would be -2.5, so at least I'm not osteoporotic yet.  Which is good because I need to stay active.., not ready for being in a wheelchair from fractured bones starting.  Just giving an update...  Take care.  Susan400

T score was -2.1  and the Z score was -1.4
Avatar universal
Just a thought on those bone meds. They work while your taking them but the minute you stop "Whammo" your bones lose the benefits.  Weight bearing (including walking) is not a temporary fix like the meds. Your bones stay strong and only diminish if you become sedentary.
Might add also that you are at an increased risk with certain cancers.  That's not hear say but a proven fact.  Ask any Dr if they take them and their answer will  be a resounding no.  You really want to avoid them at all costs.
Stay strong
Avatar universal
When I saw her, I told her I wanted to wait on taking them..., as long as possible actually.  I'm hoping by up my bone building exercise and Vit.D/calcium that I can bring it back up. My mom took Fosamax and then, Actonel..., altogether 20 yrs on bone drugs and then, still ended up getting osteoporosis, after all those years of treating the osteopenia.  Anyhow, I realize, this site is supposed to be concentrating on the Hep.  It's just that liver disease and the Hep treatment is a contributing factor in early bone thinning.  I never knew this until it happened to me and they gave me the paper that had 'liver disease' on there as one of the contributing factors.., particularly in caucasian women,..., maybe not so much in a male who has liver disease, since they wouldn't have the other risk factor involved.
Avatar universal
I will share my experience. And I have to say I do not agree with the poster who says the bone meds can't rebuild bone. In 2008, after years of interferon and ribavirin and having HCV since the mid 60's, I had my first dexa scan. My dog knocked me off a low deck and I had severe pain in my back. Xrays showed a new fracture and three old ones. The dexa scan showed a serious amount of osteoporosis in my spine with osteopenia in my hips and wrist. I did 5 years of Boniva, Caltrate and extra vitamin D. Two years later I went from a score of -3 in my spine to 1.6. I now have no evidence of osteoporosis or even osteopenia. I took the boniva for 5 years. I hate to admit it, but I do not exercise so we can't say exercise helped. It was all the boniva. I continue with the Caltrate.
Avatar universal
I am glad that you have a great experience with it and reversed your osteopenia/osteoporosis.  I know with my mom, it did not work that way for her. She was on bone drugs, calcium/Vit.D for 20 yrs total and still developed osteoporosis with 2 compression fractures in her back. Finally at 79, (she's 80 now), they said, no more bone drugs, they aren't working.  She started out with Fosamax, and after awhile when side effects start from that one, and Actonel was available, they put her on Actonel and she was on Actonel all the way up until it was stopped at 79.  So, I have that in my mind (her being mom and my genes and all), and decided that I want to put off bone drugs as long as I can. If I can reverse this w/o them, than I'm going to.  I work out a lot though and I'm increasing my bone bearing/building type of exercising and my PA has increased my Vit. D and added calcium supplement.  My mom was not a big exerciser.  Like you.  And basically about the only exercise she ever got was maybe a short walk and gardening.  Many years ago, she did water aerobics (which incidentally, while it may feel good to the joints, does not constitute as weight-bearing).  She's is in a senior living facility now, as of about 8 wks ago, and she's joined up with water aerobics again and is doing sit and fit.  I feel that at 80, any movement at all is better than nothing and at least she's not in a wheelchair. So I don't bug her about it and encourage her instead.  All drugs don't work on all people. Some people have a great result with a medication(like you did) and others, not so much.  I am just keeping an open mind and will start with the 'less is more' and see if it works, in 2 yrs if my DEXA is not improved or has worsened, at that time, then the bone drugs will be cautiously started. If I see no improvement after starting them (if I have to start them), than I will not continue with them.
Avatar universal
I am/was a competitive weightlifter, bodybuilder and hockey player. And now I have osteoporosis as well. My particular form of liver disease is noted for its bmd loss rate but it seems impossible for someone like myself to be in this state. I used to lift extremely heavy weights but stopped a little while ago due to ESLD.

I have just started again to the dismay of some of my doctors but my PCP is all for it - in moderation of course, no more barbending weights just lighter stuff. We will see ...
Avatar universal
It just doesn't make any sense, does it??  
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