MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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Osteoporosis

operalene
operalene
Does anyone have osteoporosis with this? I have it now and am trying to figure out what to take if anything since I can't take any of the biophosphates. My rheumy and PCP keep prescribing Reclast infusion but my dentist tells me my jaw isn't healthy enough so the lab won't give it to me because of potential complications (nasty ones). Keep getting back to square one with this. I haven't broken a bone or anything, it's just showing up on the DEXA scan.

Arlene
MToennis
MToennis
I have osteopenia. Currently I am on Prolia. It is injected every 6 months into my muscle in my upper arm. I have had a few broken bones, hand, fingers, vertebra.... I think all these drugs have the possible jaw issues. Maybe you should just take calcium and vitamin D. You are in a tough spot! Good luck.
Mary Ann
alwezonmymind3
alwezonmymind3
Hi Arlene,

I have osteopenia and need to get a dental implant, which I keep putting off due to the expense. So I also keep going back to square one--won't take the bone-building medicine the doctor wants me to take because of ongoing dental issues. No broken bones yet but it's kind of scary. I hope everything works out for you.
investigate
investigate
Yes ... I have osteoporosis ... discovered only by me asking for a BMD (DEXA) scan after a 6 month Prednisone course ... result was -3.1 on T scale ... it has not changed in 3 years.

Rheumy's advice was go to the gym ... can ya believe that ! ... not even a xray to look for compression fractures ... and this is the Royal Brisbane Hospital.

I got a second opinion ;-)

From the scan reports -3.0 is the cutover point from osteopenia to osteoporosis (in australia anyway).

I have just last week been given a script for Proilia from a Endo and still thinking about it.

In Japan you can get vitamin K pills at up to 40mg on prescription with a diagnosis ... I am considering going to japan to investigate ... about $700 AU return ... Prolia shots here are about $260.

You have to keep taking Prolia to keep the bone density up ... when you stop it goes down again ... I am not sure I want to start this yet.

Any more info I get I will post.
miamisun
miamisun
hi, I am new to this and was just diagnosed lasst month with a bad bone scan score. I was offered a drug called aclastra and am not sure I want to take it. Reading very bad side effects. Just am so confused. Was wondering if you ever heard of this drug?