Got my second positive LA test

Hi Everyone,

I finally was able to get my second LA test and I now have had 2 positive results 12 weeks apart.

The rheumatologist called me and is putting me on 81mg daily aspirin and said to make sure to get up every 20 minutes and move around on long trips. I asked about birth control and she said I should talk to my OBGYN to discuss possibly switching to avoid further risk for stroke.

She said if I ever want to have children, if the aspirin isn't enough to prevent miscarriages that they may put me on additional blood thinners. This worries me as I am 30 years old and my husband and I are talking about the possibility of children in the next couple years.

She said not to smoke (which I don't any way).

Other than that she didn't say much else but emailed me a lot of information about the disease.

Is there anything else I should have asked her? Or is there anything else I should be doing? Am I supposed to get regular blood tests now?

By the way, this is all by complete chance that I found out I have this; I originally was going in due to extreme pain in my hips, pelvis, legs and back (going on for 3 years) so they just ran a ton of blood tests. But she says this would not be causing my pain and thinks that is because of fibromyalgia.

Thanks for any and all advice.

8 Replies

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  • Hi

    Although being positive for APS may not sound a great idea, It's good for your long term health management that you have the diagnosis; many on here struggle for years to get diagnosed.

    Really have a good read through our charity's website:

    hughes-syndrome.org

    I'm sure others will reply to you too, soon.

    Best wishes.

    Dave

  • Thank you, I appreciate it.

  • Hi, I agree with the answer from my colleague Dave, and on our charity website you will notice the list of recommended specialists in the UK. Be aware that often Fibro turns out to be under active thyroid and or Sjogrens Disease, please also make sure your levels of iron (Ferritin), B12 and vitamin D are checked. MaryF

  • Thank you, I am located in California. I have been checked for those other levels and I have been treated for low iron and vitamin D. I had my thyroid checked a couple years ago but not since then.

  • Hi, unfortunately the TSH for Thyroid testing used is notoriously unreliable but it did show up mine in the end, I also enclose this which contains some useful names.

    apsaction.com/ MaryF

  • Thank you so much for this information.

  • The repeated blood tests are for those of us on warfarin, so, no, if you are treated with aspirin you do not need those bimonthly sticks. Many people have successful pregnancies with proper treatment.

    We have noted on this site a correlation between gluten, or other food sensitivities, and autoimmune diseases, so you might explore that possibility.

    But it sounds as though you have some competent caregivers who caught your malady before you drifted in to the truly scary symptom-land.

  • Thank you. Yes, I'm happy to know now so I can take preventative measures.

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