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  • Sjogren's at age 42 and Osteoporosis at age 44... What to do?

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    Old 01-05-2017, 12:33 AM   #1
    40Plus
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    Sjogren's at age 42 and Osteoporosis at age 44... What to do?

    I am 44 years old and have just been diagnosed with Osteoporosis... Not Osteopenia. A little over a year and a half ago I was diagnosed with Sjogren's Syndrome. I currently have radiating pain in my left leg behind the thigh, that I believe is sciatica. It is starting to extend to my lower calf. During the day, the pain is becoming more noticeable. At night, it is just down right intolerable. It keeps me up, and/or wakes me up in the middle of the night. I also have had pain in my left arm for one entire calendar year that started at the elbow, but now goes into my shoulder. I originally thought this was likely tennis elbow and would heal with time. When the shoulder started to give me fits, I thought torn rotator cuff. Now that I see my bone density is revealing significant Osteoporosis in the femoral neck and moderate Osteopenia in L1-L4, I'm thinking these things are connected and not separate issues.

    My big question is how to treat from this point? I'm not big on meds, and kind of think meds are to blame for the rapid progression of the disease here. It's quite suspicious that the Osteoporosis coincides with the Sjogren's diagnosis and use of Plaquinil to treat. (My bone density was fine/normal before I started Plaquinil.) I get it that I need to arrest the Osteoporosis and will likely only be able to do that with meds. However... I'm just wondering if anyone else out there has these break down issues at age 44 or less... And if so... What are you doing to remedy the situation? I'm coming to the realization that I need to make choices about what "I can and can't live with" and will likely have to do things that will leave me darned if I do and darned if I don't. I would just like to make an informed decision and would really value input from anyone else who might have these issues in this age range... Just seems a bit on the young side and will not lend itself well to traditional Rx therapy. Thanks sincerely!

     
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    Old 01-09-2017, 07:46 AM   #2
    prizm 2000
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    Re: Sjogren's at age 42 and Osteoporosis at age 44... What to do?

    Understand your frustration....I was diagnosed with Osteoporosis 2009 and Sjogren's was finally confirmed in 2014. Am on the regimen of bisphosphonates, calcium, D3 and testosterone to treat Osteoporosis. Am also taking plaquenil, pilocarpine, and allopurinol for Sjogren's. Never was one to take meds, but it seems necessary at this point. If you don't already have one, get a good rheumatologist to follow you for your conditions. That has helped me tremendously. Have not seen the connection between plaquenil and bone breakdown. Will check that out with my Dr.... Very interesting. Wish you success in your situation.

     
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    Old 01-12-2017, 06:50 AM   #3
    pamb123
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    Re: Sjogren's at age 42 and Osteoporosis at age 44... What to do?

    Quote:
    Originally Posted by 40Plus View Post
    I am 44 years old and have just been diagnosed with Osteoporosis... Not Osteopenia. A little over a year and a half ago I was diagnosed with Sjogren's Syndrome. I currently have radiating pain in my left leg behind the thigh, that I believe is sciatica. It is starting to extend to my lower calf. During the day, the pain is becoming more noticeable. At night, it is just down right intolerable. It keeps me up, and/or wakes me up in the middle of the night. I also have had pain in my left arm for one entire calendar year that started at the elbow, but now goes into my shoulder. I originally thought this was likely tennis elbow and would heal with time. When the shoulder started to give me fits, I thought torn rotator cuff. Now that I see my bone density is revealing significant Osteoporosis in the femoral neck and moderate Osteopenia in L1-L4, I'm thinking these things are connected and not separate issues.

    My big question is how to treat from this point? I'm not big on meds, and kind of think meds are to blame for the rapid progression of the disease here. It's quite suspicious that the Osteoporosis coincides with the Sjogren's diagnosis and use of Plaquinil to treat. (My bone density was fine/normal before I started Plaquinil.) I get it that I need to arrest the Osteoporosis and will likely only be able to do that with meds. However... I'm just wondering if anyone else out there has these break down issues at age 44 or less... And if so... What are you doing to remedy the situation? I'm coming to the realization that I need to make choices about what "I can and can't live with" and will likely have to do things that will leave me darned if I do and darned if I don't. I would just like to make an informed decision and would really value input from anyone else who might have these issues in this age range... Just seems a bit on the young side and will not lend itself well to traditional Rx therapy. Thanks sincerely!
    Hi , I understand how you feel completely it gets very discouraging I now. I came down all of a sudden 3 months after the birth of my last child. 14 years ago. I have been diagnosed with SLe. .. Which is so greens and at one point Graves disease that has gone away. I go through very bad times some worse then others. I am 56 now and the pain in all my joints have greatly escalated through the years. I could not take plaquinel as it helped but made me so sick. I would find something and stay on it. Maybe with it you won't escalate like mine has. I wish you the best : )

     
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