Member Interviews: Priya Talks About Actonel
Help me welcome Priya to our member interviews! Priya is a member here at OsteoporosisConnection who frequently contributes with Shareposts and thought-provoking questions. Priya lives in India and tells us about his experience with Actonel and osteoporosis treatment in another country. Let's get started with Priya's story.
How did you find out you had bone loss, did you have a DEXA scan or some other test? How long ago was this and what was the diagnosis, osteoporosis or osteopenia?
I had no idea about osteoporosis and bone loss right up to 2007 when I was 65 years old. Due to my genes perhaps age never showed up on my face and figure so that people frequently thought I was in my 30's, except for my whitening hair. I knew I always had thin bones but did not even know of any such thing as osteoporosis all my life!! I had heard of arthritis and bone pains, but never of bone loss! I suppose this would still be the case with the majority of people in India. I had been walking a lot as a school boy in India in the hills, but with little milk in the diet. But later when I was in the US at Harvard in College I was taking milk three times a day for almost four years! I know my fingers were very thing - thinner than that of many girls! I attributed that to lack of milk in my childhood as I always hated the taste of milk in India!
In 2007 I had a strained hamstring and went to an orthopedist in New Delhi. He thumped me on the spine with his fist and said the sound wasn't good. He ordered x-rays - and said that I had fractured vertebrae. Then he ordered a bone density test. And he said the results were terrible in the range of - 3.6 to - 4 everywhere. He called a pharmaceutical agent who was conveniently present and advised Forteo injections as an emergency treatment. Since they were much too expensive for me to afford I went to another doctor and got another DEXA scan done the next day. This machine showed I was a borderline case of osteoporosis and had osteopenia!! The results ranged from -2.6 to -1.7. It was the first time in my life that I found out what osteoporosis and bone loss were all about! The second doctor also told me that my x-rays had been normal and there were no fractured vertebrae as the first doctor had said.
Did your doctor recommend an osteoporosis medication or did you just increase your supplements and exercise?
Since I had no idea what to do the doctor prescribed Actonel 35 mg once a week, as well as Calcium Citrate Maleate tablets twice a day. He said nothing about exercise or any other change in the diet. In fact he just looked at the DEXA scan results and set down Actonel on paper - and that was it. I still didn't understand what was happening to me and what osteoporosis was all about, until I started studying the subject on the internet.
Does your insurance cover osteoporosis medications? If so, and you took one of the medications did you have any trouble with it?
In India very few people - only those who can afford the high costs - have anything known as health insurance. The Government Servants are covered by some health plan, but for the rest of the population it is just a free for all - get your medical aid at your own costs, for better or worse, at good hospitals or in the hands of quacks.
When I started taking Actonel I think I became less active physically and mentally. An ache developed in my left thigh, which had been just a tingling sensation due to a slipped disc before. The ache got worse and worse until I would have to stop and walk and stop and walk! I think this began after Actonel. My stomach and digestion were frequently bad and I was getting influenza again and again - the body appeared to lose its resistance to disease. On the whole I felt bad. I took the Actonel for 13 months and just got worse and worse in terms of aches and fatigue. I had no means of testing my bones up here in the hills where medical aid is practically non-existent. But all the same I continued to walk even over hilly terrain. No doctor ever told me to exercise or to go on walking - they were silent on exercise altogether. I found this out only on the internet.
Have you always exercised and taken supplements? Tell us about your daily routine with these.
I was very active in the hills and walked a lot, but took only B complex capsules and nothing else and a diet rich in milk before and after the diagnosis of osteoporosis. Of course afterwards I added one calcium tablet to the milk. I walked every day in the past and every alternate day now. But after the Actonel which I gave up in November 2008 - the persistent fatigue while walking is still present, even though I still walk up and down hilly slopes. Shall we say I have never been the same again after taking and even stopping Actonel.
Were you tested for a secondary cause of osteoporosis, or do you have one of the usual risk factors?
I was never tested for any secondary cause - nor was I told that there could be a secondary cause. I could not think of a risk factor at the time - because I was taking 3 glasses of milk and walking on the hills. But NOW after going to the net and coming to sites like OsteoporosisConnection - I am convinced that I had a major risk factor. No doctor here even bothered to mention it. It must have been Vitamin D!! I was a book worm most of my life and an author confined to the house later - and walked with only the face uncovered and that too with a hat! So I was not getting any sunshine since childhood!! It never occurred to me or to anyone else that I would be grossly deficient in Vitamin D!! I believe that MUST have been the cause. In any case I was never tested for it nor for any other secondary cause, so I would not know for certain even today!!
I know that you live in India; so how does your medical care differ from other countries?
The medical care in India is very different. They use all the medicines that you have in the US except for the fact that the medicines are cheap and most people can afford them. For example a month's supply of Actonel 35mg costs $ 3 here and even the lower middle class can afford it. But people by and large cannot afford DEXA scans which cost up to $ 40 which is a lot of money in India - Rupees Two Thousand. It would be like spending two thousand dollars in the US. Many people will go through life without knowing what a DEXA scan is. Most people are on their own when it comes to getting medical aid here. The rich can spend well and go to the best of hospitals which even cater to foreigners - these people will have all the ultra modern equipment DEXA scans, MRI, and CT scans and even Heart Surgeries. The poor have to made do with whatever is available in government run hospitals, many of which are free. There are a large number of alternative medicine doctors here - homeopaths being the majority, followed by Ayurveda doctors, and droves of people go to them. Their medicines are much cheaper and are also said to be effective. For example they have Calcarea Phosphate 30 for brittle bones, which is just Calcium Phosphate in the 30th potency of homeopathy. Many claim to do well on these medicines.
Do you think men are treated differently by doctors treating osteopenia or osteoporosis? Some men feel that the care they receive is sub-par compared to women. Is this the case in your country or are the treatments for women the same as for men?
There is a general unawareness about osteoporosis here - it is just a disease and doctors rarely get to diagnose it, and when they do, it is just another case, just another patient, whether male or female. They don't differentiate between them. The Gynecologists may provide different treatment to women, but as far as the orthopedists are concerned they just treat them alike. My sisters have osteoporosis - one is going about without any treatment at all and the other was given the same treatment as me - Actonel and Calcium. I don't think many doctors here would even know about HRT or Evista for osteoporosis except perhaps in some very sophisticated hospitals. By and large Indians only go to doctors when something goes wrong - and therefore osteoporosis being a silent disease is seldom diagnosed. Even after people have had fractures they are treated like normal people with fractures, whether men or women.
Do you have the same medications for osteoporosis treatment that we do in the U.S., and what is the most popular treatment?
Yes, all the medical treatments follow the pattern of the US - and there are only one the Bisphosphonates!! The monthly and weekly medicines as most patients call them! It is in fact the only treatment they have here!
How are you doing now, and have you seen any increases in bone density?
I really don't know what my bone density is after 2 years. I will have to go down to New Delhi to get a DEXA scan - and I am afraid to go there because of the swine flue and other viruses active there, which grip a person from the hills instantly because he has been living in such a pure mountain air. All I can say is that I am feeling better after quitting Actonel. And thanks to sites like OsteoporosisConnection and your expert guidance and that of Phyllis and Hamel I have become aware of osteoporosis more - and am walking as much as I can. I am doing much better now after adding Vitamin D 60,000 IU per week since one and a half months. I feel more energetic and less fatigued. I can feel nothing in the bones now or ever before.
Now that you are on a therapeutic dose of vitamin D do you have any concerns about this, and is it helping your vitamin D level and bone loss?
Yes, I am taking 60,000 IU per week on my own and I am feeling better and better day by day. My major concern remains that there are no facilities for monitoring the Vitamin D in the blood - and no doctor here knows anything about blood levels of Vitamin D and what they should be. My major concern is lest I should get hypercalcemia from too much Vitamin D.
What advice would you give to those who are newly diagnosed, as far as treatment options go, do you recommend one treatment over another?
I would suggest that they first try Vitamin D before trying the bisphosphonates - and not rely upon one machine for the DEXA results which were wrong in my case!! I would suggest that they walk a lot - as the healthiest Indians seem to be the ones who walk all day long!
What will you do in the future to slow your bone loss?
I think I will simply go on taking Vitamin D - as its benefits go much beyond osteoporosis. The sites below impressed me beyond measure, as did your help and encouragement and that of the other experts on OsteoporosisConnection.
Thank you Priya for a fantastic interview. I'm sure all our members will enjoy reading about your treatment.