I didn't know anything about this. Are you finished with TX? If so, when did you finish? I hope someone chimes in with some info.
I finished TX a little over a year ago. I was only on it for 14 weeks. When I stopped I felt rapid improvement for a month or so then felt fantastic for a few weeks. After that it has been all downhill, much worse than I was before TX. Needless to say I didn't clear after that short time (GT1). Looking at my numbers, my specialist thought that I would almost certainly relapse. I couldn't work at all, no-one to carry the load for me, so I was reluctant to keep going for 18 months or two years (plus recovery) and lose my house and business.
I suspect that I don't eat quite enough calcium, but that TX pushed me way over the edge. If I hadn't been heavily into exercise it could be worse. There are a few threads on the board here about it, back in 1999 or so.
Here is a link to one study that points the finger and Ribavirin more than Interferon. In case you aren't familiar with the ranges, normal is -1 to 1. Osteopenia is -1 to -2.5. Less than -2.5 is Osteoporosis when fractures can occur spontaneously, after small bumps and so on. As far as I can see there aren't a lot of reports of fractures. The study says almost all subjects on IFN/Riba combination therapy experienced bone density loss.
For those that are currently treating there might be something that can be done to minimise it. At least have a couple of bone scans to see what is going on. Age obviously makes a difference. I am 52 and female so menopause also contributes to the problem. Even so, my doctor was shocked and said she wanted to know why it was so bad for my age. I went home and started looking too. That's when I started finding out the probable cause.
From my point of view I want to know if I can reverse it. Curious to know if people have had bone scans after treatment and tried to improve/measure the situation.
One last thing. My understanding is that having a thyroid condition also affects bone density. I don't but some people may be more srtongly affected by this problem for that reason.
I'm sorry about you diagnosis.
I was aware of this problem during treatment and had the scan done. Fortunately it came out normal.
I remember coming across a study some time ago saying that successful treatment had actually helped with the bone density. So with SVR one could actually help this problem, too.
I didn't look further into any treatments of this, as I had good results.
I read the study you posted but I still find it astounding that 14 weeks of tx could create osteopenia. Like Marcia, I remember an article that successful tx could actually increase bone density but could not find it when I was looking for it to give my internist.
I was dx with osteopenia a month before I started treatment for C and began taking fosamax weekly - the low dose 35 mg per week. Before tx for C my hip T score was -1.7. After treatment my T score was -1.3, so it did improve. The lumbar spine T score imporved during that time too. I continued to take the fosamax thoughout my tx and did not clear the virus, so would surmise the improvement was from the fosamax and not anything else.
So yes, there is a way to reverse your bone loss and I am surprised your doctor has not suggested fosamax or the generic equivalent.
Thanks for the information. I have heard of Fosamax. I have only just had the diagnosis. The doctor is currently looking into possible causes, she wants to talk with my gastroenterologist and so on. I will certainly ask about Fosamax next time I see her.
I didn't (and can't) say that TX was entirely responsible. I think it was likely to have been a significant contributing factor. I had no idea about the bone density loss issue until now. I would have liked to have had it monitored/managed in association with treatment while I was undergoing it not find out afterwards.
Here is the abstract for the study you refer to:
Unfortunately there is no information about sponsors and collaborators on the above Web page. I haven't paid to retrieve the details of the study. It is hard to know from that small amount of information whether to take it seriously or not. It does seem rather optimistic. It seems that they stating that treatment actually increases bone mineral density while you are treating. They state that the improvement might presist after successful treatment, but BMD decreases to previous levels on relapse. That is opposite to everything else I have seen and heard which is curious.
I favour the study by the University of Ulm (the first link) because they have made an effort to rule out influences such as menopause, and they have compared IFN versus Riba. I'd certainly like to know why the results can be so completely opposite.
Either way, for people treating or considering doing so, it wouldn't hurt to check BMD.
I have osteopenia as well. I'm 48 but, was diagnosed with it at 47. I participated in a clinical trial last year and they had a sub-study going on at that same time as a part of the trial. They did a baseline bone densitometry prior to my Hep C treatment for that trial and then, again, 30 days later (after the treatment was started). There was a reduction in my bone density after just 30 days of treatment. Since I've treated 10 times, I'm not surprised that I would have osteopenia. Since then, I've increased my calcium and Vit. D and I've way increased my exercising. I wish you the best of success in reversing your osteopenia. I am due to have another bone densitometry in about 6 mon, to recheck it.
Thanks Susan. It is interesting that 30 days was enough to bring about a BMD reduction. I wonder if some people are more susceptible than others.
I am certainly going to try to reverse it. People have been telling me that it is very hard/impossible to reverse. I won't accept that until I have given it a good try.
Good luck to you too. I hope your exercise/diet help. Did you get advice about that? Did anyone mention Fosamax to you? My doctor didn't. She told me to up my calcium to 1300 mg per day, every day. She is waiting for the Vit. D test before commenting on that. Still in the middle of a round of tests at the moment.
You are amazing... still standing after treating 10 times!
I had osteopenia in my 20's and osteoporosis not too long after that - this was before I was ever infected with hcv and before I treated. I'm going to get a scan soon to see where I'm at post tx. I was supposed to start fosamax or something similar several years ago and never got around to it but I really need to get that covered. I didn't even think about the possibility of tx adding to the mix.
I wonder why you had osteopenia when so young? Hope you are doing well now.
After a few more days of reading and seeing people's input it seems like HCV contributes to bone mineral density loss but Ribavirin makes it worse. I had absolutely no idea about this either. Interesting that some doctors are onto the problem and it isn't on the radar for others. It makes sense that problems with teeth are related too. TX causes significant BMD loss in men too. I am thinking if I already have osteopenia now and am recently menopausal I am looking at some serious issues some years down the track. I like my (slightly) rough and tumble sport. Don't want to be carried out of the forrest on a stretcher.
Further interesting info:
Susan400 posted this link last year:
and frijole posted this from Melissa Palmer, MD:
Osteoporosis is a condition characterized by decreased bone mass and decreased bone density. This leads to a weakening of bones, thereby increasing the risk of bone pain and bone fractures. Some liver experts believe that ribavirin may cause or worsen osteoporosis.
Women are at higher risk for the development of osteoporosis than men. Post-menopausal women are particularly susceptible to osteoporosis because, as estrogen production stops, bone loss accelerates. In addition, women naturally have a lower percentage of muscle and bone mass than men. This further increases their risk of developing osteoporosis.
Finally, lack of activity resulting from excessive fatigue as well as poor nutritional habits while on therapy further puts women at risk for osteoporosis
All women with HCV especially postmenopausal women, and women with cirrhosis should undergo bone-mineral-density testing in order to determine whether they have osteoporosis. Blood tests, by themselves, are an insufficient means of measuring bone density and calcium requirements.
There are some steps that can be taken to reduce the likelihood of osteoporosis. Women should supplement their diets with calcium (1,000 to 2,000 milligrams per day) and vitamin D (400 to 800 IU per day). Also, an exercise routine, including weight-bearing exercises, must be incorporated into one’s lifestyle. Weight-bearing exercises not only increase muscle size, but they increase underlying bone mass, thus decreasing the likelihood of osteoporosis. Smoking, alcohol, and excessive caffeine should be avoided as these factors may worsen osteoporosis
Estrogen-hormonal therapy has been demonstrated to increase bone mass. However, oral estrogen replacement should generally be avoided in women with HCV, as it may cause additional liver problems, such as worsening of cholestasis. Furthermore, estrogen supplementation may cause certain benign liver tumors, such as hemangiomas and/or hepatic adenomas, which are more common in women to enlarge. Estrogen patches are generally a safer choice. Implantable estrogen, a recent development, is probably safe, but long-term studies as to its effect on liver disease have not been done. Soy estrogen, originally thought to be a safe alternative, should be avoided, as recent reports have suggested that it may cause drug-induced hepatitis.
Biphosphonates are phosphate derivatives that bind to the surface of the bone, thereby blocking bone removal and decreasing bone loss. Currently, there are three biphosphonates - alendronate [Fosamax], etidronate [Didronal]) and risedronate [Actonel], that have been approved by the FDA for the prevention and treatment of osteoporosis. These medications have been shown to increase bone mass, prevent bone loss, and to decrease the incidence of bone fractures. Fosamax and Actonal have the advantage of a once-a-week administration, as opposed to the alternative of daily administration. Biphosphonates should be taken on an empty stomach, along with at least 8 ounces of water. The patient should swallow the tablet while in an upright position and not lie down for 30 minutes after taking this drug. Calcium should not be taken at the same time. Women at high risk for osteoporosis with HCV with may benefit from starting biphosphonate therapy before they develop osteoporosis. Any woman who already has osteoporosis should begin biphosphonate therapy promptly. However, women with esophageal varices should probably avoid these medications because of the drug’s capability to cause ulcers in the esophagus, which may precipitate esophageal variceal hemorrhage. Calcitonin (Miacalcin) is a hormone produced by the thyroid gland that decreases the release of calcium from the bones. Calcitonin has been shown to reduce the incidence of bone fractures and bone loss in postmenopausal women with osteoporosis. Synthetic calcitonin, known as miacalcin, is FDA approved for the treatment of osteoporosis. When sprayed into the nose, miacalcin is quickly absorbed into the blood stream. It may be also be taken as a subcutaneous injection. Miacalcin has also been shown to decrease bone pain associated with bone fractures caused by osteoporosis. In addition, it appears to be quite beneficial in preventing bone loss after liver transplantation. Thus, miacalcin can be an effective alternative for women who do not wish to take, or are unable to take, bisphosphonates.
All contents of this article are Copyright © Melissa Palmer, MD
I only had hcv for three months before I started treating. I think I had early osteoporosis as part of an autoimmune process.
Thanks for that link . I don't pay for articles either but think I may be able to get the whole article in the local hospital library. I would like to read it since it indicates that hepatitis C may be a factor in osteoporosis. I have lost 1 1/2 inches in height over the last few years and find that very disturbing. IT would definitely be one more reason to get rid of this d**m virus.
Here is yet another study. Unfortunately the detailed results tables are missing. I'd like to see the actual figures.
I find this one interesting because it suggests that the bone mineral density loss is greater in the lumbar region of the spine during treatment. My personal results support that. There is a quite a difference between the hip (-1.4) and spine (-2.0) T-scores. Although that result isn't definitive it seems pretty significant given approximate rates of difference to be expected are 54% concordance, 42% minor dischordance, and 4% major dischordance. (Major dischordance is classified as 1.0 unit difference between lumbar and hip T-scores.)
The study checked for malabsorption of calcium and vitamin D deficiency as possible causes, they couldn't find significant differences between the control and treating groups using their selected markers. They therefore suggest that some other mechanism is likely to be causing the loss and that it may be related to differing concentrations of the two types of tissue that form bones. They suggest the spongy bits (cancellous bone) not the hard outer layer (cortical bone) might be getting trounced. Interesting.
Great thread. I am in the same boat as you. A lifetime of weight bearing excercise prior to diagnosis,but no pre-tx bone density test to compare with. I am scheduling my post tx bone density soon and am nervous of the outcome.
Thanks for starting this thread....lots of good information to reference once I get my results.
Please keep us updated.on your condition
My Fiancee' has finished her combination treatment 3 months ago took a few weeks to get back on her feet and explained it will take upto 6 months for the body to get back to square one.
There is no detection of the virus but her last test next month will confirm that and reaching the stage that she can start to look up in life after all she has been through.
Last weekend she was helping her friend take some of the weeds out of the garden two days later was in considerable pain, went to see her doctor yesterday and had an Xray he returned and stated OMG
She has "Fractured" her spine, has Osteoporosis and Arthritis up the Spine.
He explained that the treatment for the Hep C has created the damage to the bones and is more than likely the Ribavirin.
Her Xray has gone in for further examination, and has to have a Bone Density scan, followed by another and then will have injections into the spine with a cement to Bond the fracture of the Spine!
I had a bone density before the t i started the treatment it was low. in week 13 so we see after treatment
I just wanted to chime in here. I have no family history of osteoporosis. I completed 24 weeks of tx in December 2011. In January 2012 I had a bone density test because my GP said I should have one since I am post menopause. My results were excellent and I do not even need to take calcium. BTW I never had a bone density test before. I hope you all that are seeing this result can get treated and reverse your bone loss.
I am posting so you all know that not everyone will have this issue. Just get checked and don't worry. :0)
The fact that tx is indeed hard on bones underscores how important it is to be proactive during tx. Take Vitamin D and Calcium and keep walking as much as you are able.
Cirrhosis can also deplete our bones.
After falling numerous times, being thrown from horses, and never ever breaking anything, I was sure I had flexible bones.
Then I did tx in 2007 which included lots of neupogen. At that time, I took no calcium or vitamin D. A few months after finishing tx, I jumped into bed one night, missed the bed, hit the floor and broke my arm.
This time around I took calcium, D and made sure to keep moving whenever I was up to it.
Just read this thread because last week I was told by my doctor that my dexa scan came back indicating osteoporosis. I had a previous scan in 2009 which showed slight osteopenia. My doctor says the change is significant. I have always been extremely active having been in the fitness industry for 30 years. Unfortunately I have no idea whether it runs in my family as my mother passed away 27 years ago at age 53. I completed 24 weeks of triple treatment in April and reached SVR and feel great. This diagnoses is depressing. After pushing through all the nasty side effects of treatment I'd like to enjoy feeling healthy for a little while until I need to tackle something else. Anyone in the same boat? I'm not sure if I want to take the medication. I'm looking to try to fix this another way. Suggestions?
I had Osteopenia several years ago and applied an estrogen patch once a week, took Fosamax once a week, and took Citracal Plus D 5 tabs a day. After several years (13 years) of treatment my bone density gradually went from pathological fracture stage back up to normal bone density. It was well worth the treatment in order to avoid hip fractures and vertebral compression fractures.
About 2008 I stopped the Estrogen but continued on the Fosamax and Citracal Plus D. I maintained fairly well until Hep C treatment (started in Sept. 2011 and treated for 48 weeks). In June 2013 I had another bone density scan and it shows a decrease in bone density, not as severe as previously, but it is not stable either. I am back on the Estrogen patch and continue the Citracal Plus D. I stopped the Fosamax in June.
I do think treatment was the cause of the decrease in bone density.
I don't really have any suggestions for alternative treatments other than to be sure you are getting enough Calcium and Vitamin D. It may be advantageous to see an Endocrinologist about this problem, be tested for your calcium level, and be tested for your Vitamin D level. My Endocrinologist kept very close tabs on my levels and adjusted doses depending on the levels. He was very successful in getting me back to normal bone density. Endocrinologists know a lot more about treating Osteoporosis than GPs or PCPs do.
Keep in mind that left untreated, Osteoporosis can be a huge problem. The bones can become so porous that they can fracture just by coughing or by walking on them. The vertebrae can become so porous that they will collapse just from the weight of the head and spinal column. One does not want to get to that stage.
Thanks Pooh. I have already see an osteoporosis specialist. I have an endocrinologist as well because of thyroid issues. I'll make sure he's on board too I'm having blood work done this week to check my D level. At least this is something treatable. Onward and upward.......kind of limping.