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Thread: Potential heterotopic ossification (HO) therapy

  1. #1

    Potential heterotopic ossification (HO) therapy

    So there is a new drug for breast cancer therapy called Piqray, which inhibits the PI3Ka gene. In the link to the study below they used that to inhibit the formation of HO.

    Since this is an FDA approved drug for one condition and seems to be tolerated well....what's the criteria, or typical time frame for an already approved drug getting the approval for another condition ? I'm sure there is a term I can look up for getting a FDA approved drug fast tracked for another use...?

    https://www.embopress.org/doi/full/10.15252/emmm.201910567
    Canadian bacon is a fraud !!!!

  2. #2
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    Looking at the headline of that research article one thought is: preventing HO is a very different thing from fixing one already established.

  3. #3
    Quote Originally Posted by Tetracyclone View Post
    Looking at the headline of that research article one thought is: preventing HO is a very different thing from fixing one already established.
    The only fix is removal or a drug like this to prevent it in the first place. I’m ready for removal, the ho in my hip area is connecting and it’s now really started to screw with my posture. I desperately need this drug for post surgery, so it doesn’t come back.

    I wonder if my surgeon could legally prescribe it to me even though it’s approved for only one condition....
    Canadian bacon is a fraud !!!!

  4. #4
    Senior Member craig's Avatar
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    I have had a ho bump in my hip fore 38 years i'm 64, 38 post injury c7. anyway it is starting to grow now and i'm looking for information.

  5. #5
    Good question. The prevention of HO is an “unapproved” use of this medication. I would consult the surgeon and have him/her contact the manufacturer or drug company

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #6
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    Remember taking some pills in rehab for my HO and as time went by, it stop growing in my right hip.

    Going on my information, not on medical facts, understand that the only time you want to remove HO is when it inhibits your range of motion. Unfortunately, it is also a very dangerous thing to do because when some people have it "chipped" away, it's like pruning a bush, it grows back with a vengeance.

    Now in my 50s every time I broke a leg my right hip doubled in size because of the increasing calcium my body produced to fix the leg, the HO woke back up. Now there is a lump like a tangerine on top of a cinderblock pushing through my skin from the inside out.

    You could contact the manufacturer of the drug and ask them to help you get a waiver for you to try it if you do have your HO chipped away. It may be create a new market for the company by sharing this piece of information

  7. #7
    Quote Originally Posted by McLaren87 View Post
    The only fix is removal or a drug like this to prevent it in the first place. I?m ready for removal, the ho in my hip area is connecting and it?s now really started to screw with my posture. I desperately need this drug for post surgery, so it doesn?t come back.

    I wonder if my surgeon could legally prescribe it to me even though it?s approved for only one condition....
    In the US, physicians can definitely prescribe 'off label' for non-approved uses. Not all of them will, but all of them can

  8. #8
    Quote Originally Posted by quadfather View Post
    In the US, physicians can definitely prescribe 'off label' for non-approved uses. Not all of them will, but all of them can
    Well that's good to know. I need to look into my state's requirements and see if they put on any additional restrictions. Then to see if my Dr. has a in house policy restriction.
    Canadian bacon is a fraud !!!!

  9. #9
    Quote Originally Posted by Cris View Post
    Remember taking some pills in rehab for my HO and as time went by, it stop growing in my right hip.

    Going on my information, not on medical facts, understand that the only time you want to remove HO is when it inhibits your range of motion. Unfortunately, it is also a very dangerous thing to do because when some people have it "chipped" away, it's like pruning a bush, it grows back with a vengeance.

    Now in my 50s every time I broke a leg my right hip doubled in size because of the increasing calcium my body produced to fix the leg, the HO woke back up. Now there is a lump like a tangerine on top of a cinderblock pushing through my skin from the inside out.

    You could contact the manufacturer of the drug and ask them to help you get a waiver for you to try it if you do have your HO chipped away. It may be create a new market for the company by sharing this piece of information
    Ugh, I'm so sorry to hear that. At this point I would rather be healed of this than my SCI. I couldn't imagine the pain if I could actually feel and it already hurts. How are you coping ?

    That's a good idea. I feel the results of the study are compelling and look to have a much greater therapeutic benefit over anti-inflammatory drugs.
    Canadian bacon is a fraud !!!!

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