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Hi, I live in the US (Texas) and was diagnosed with APS/Hughes in 2011 after a series of surgeries, bleeding and blood transfusions. Apparently I had a DVT in my groin. It was very small (microclot?) and I wasn't given anything other than baby aspirin daily which I have been on consistently since. Last year I required an oophorectomy for a hemorrhagic cyst (uterus was taken in 2011) and my OB/GYN prescribed Estradiol injections or patch for Hormone Replacement Therapy. I questioned and was told I shouldn't take estrogen by mouth but other routes were safe. 6 months ago I began having right hip pain. My general practitioner said it was bursitis, did no tests and prescribed physical therapy. I did not go to physical therapy but increased my yoga practice and it helped but never alleviated the symptoms. She also prescribed an NSAID twice daily. I have been leery of taking NSAIDS since my diagnosis because I want to preserve my stomach as a GI bleed could be catastrophic. I became suspicious of the estrogen because the hip pain started when I changed from the injection to the patch and I believe the dosages were slightly different. I was also never prescribed a progesterone but was told to take DHEA daily. So on my own I went back to the injections and have started the process of weaning myself off. The hip pain is less, only stiffness most of the time now, but I have had chronic headaches with some turning into migraines during the peak days of the injection. I do not have a rheumatologists and was never even told I should have one. I am considering stopping the estradiol cold-turkey but would like some input from fellow patients. I am trying to get into a rheumatologist in my area within the next month. My estradiol shot is due tomorrow and I am on the fence about what to do. I am 39...

17 Replies

  • I was taken off all hormone therapy when I was diagnosed with APS. With APS you are already at high risk of stroke. Not sure why your docs want you on hormones which increase stroke risk even if you didn't have APS.

    I only see my rheumy every six months if I'm doing well, but see coumadin clinic through my hematologist office. If you cannot get to a rheumy soon enough, try a hemi first. Just a suggestion.

    BTW, I'm in south east Louisiana.

  • When I was first diagnosed I had a great hematologist but I moved to central Texas and haven't been too impressed with my doctors in regards to APS. That's why I'm shopping for a rheumatologist now. I live in a small town so it's been isolating trying to find a doctor. Were you on BCP or HRT? If HRT did you wean off gradually or stop cold turkey? I think my age was a factor in my doctor wanting me to be on estrogen and I didn't do enough research until I started having problems. Now I'm angry with myself for being on the estradiol this long or even at all! Thank you for your reply! I'm in Fredericksburg Tx in the TX hill country, south/central Texas.

  • HI and welcome, the hormone route is a problem for Hughes Syndrome/APS patients, there are some names on this list who could be contacted for advice, there are others on this forum from the USA and some nearer to your area of the country:

    It is not safe for you to be unmonitored by a specialist especially if your doctors do not understand the drugs not suitable for a person with your medical condition, or indeed your condition at all. You may have to travel to a consultant who in turn will be able to instruct your local doctor. MaryF

  • I was on estradiol patch. I think I went cold turkey. I'm an hour and a half from my docs. Good lick to you and check to see if there is anyone close to you on Mary's link.

    Also check APS foundation of America website too. They list docs by state.

  • Thank you! It looks like Houston is the closest and that's about 3 1/2 hours from me, unfortunately. My estrogen shot is due today but I am not going to take it. I had been weaning myself off anyway. I had a "gut feeling" it was causing problems. I'm on a mission now to get better care for myself. I'm so grateful to this site because I don't know anyone near me who has this diagnosis. Thank you again. You in the UK seem to know so much more about this than we do here. Bless you!

  • I finally had to have my hip replaced in 2013 after years of increasing pain and osteoarthritis damage. I have been keeping the pain under control until my doctor put me on a hormone therapy that had eStrong end, including estradiol in it. Before that estrogen mix the same doctor had me on progesterone cream and I love that stuff! My mood was better my attention was better and my pain was better on the progesterone. Then he switched me to the pill with the estradiol and my fatigue became worse my attention level dropped and the pain in the hip increased. I then tried for quite some time to explain to the doctor that while the progesterone cream worked wonders this new hormone therapy was making me feel worse. He ignored me and quoted studies about perimenopause and hormone levels. Finally I weaned myself off the pills on my own, but by then the hip joint was too far gone. The physical damage to the hip required surgery, and the surgery went quite well. Did the estradiol make the hip worse? Or did it have no effect at all and the increasing pain and dysfunction was inevitable? I'll never know.

    But we do know that the estrogens are pro-inflammatory. Though that is not always bad; our bodies rely on the give and take among pro and anti inflammatory hormones.

    But the process is complex and still not well understood. This is why seeing a doctor knowledgable in APS is crucial.

  • Thank you, thank you, thank you! I'm going to go with my gut and stop the estradiol. I had been doing research about balancing hormones naturally and have progesterone cream that I will start using instead. The more I research, the more questions I should have asked but the oophorrctomy was an emergency and I didn't have any time to prepare myself. Hopefully the damage to my hip is not too extreme since it's only been 6 months. I was showing classic signs of estrogen dominance so I'm sure that was my body's way of telling me I didn't need it. Our bodies will let us know if we just listen...and then be lucky enough to find a doctor that will also listen!

  • hi there to all you ladies in the USA. I hope the weather is better where you are. I came off my hrt. Patches 3 years ago after being on it for20 years.I was advised by the doc. To stop using it because I was diagnosed with Hughes syndrome, although I have never had a clotting episode ,I thought I would stop it anyway.I went cold turkey and started with hot flushes more or less straight away. I keep to a strict vegetarian diet and use a lot of soya . All the best elfie

  • If you are close to Galveston at all then you are close to the only APS expert and researcher in the Southern U.S. on Dr. Hughes list. I live in the Ft. Worth area and have an appt with that hospitals rheumatologist department. She is the only one on Dr. Hughes list close to us in Texas.

    Here is the info on the clinic:

    Adult Rheumatology Clinic at UTMB access center

    409-772-2222 or 800-917-8906 if you cannot find a closer rheumatologist.

  • I live in the Abilene , Tx area. I did notice a Galveston/Houston Physician on the list but I had decided she only did research. Thanks for the info, I am sure my insurance will not cover the Galveston area but will certainly google and check them out.

  • I live in Katy Texas and Dr. Chimata (rheumatologist) diagnosed me my first visit with her a couple weeks ago with aps primary, of course through blood work, she is very knowledgeable, the only thing with me is I'm on a baby aspirin and still having issues, I'm not sure how long it takes to see improvements and I'm scared. I was in shock when diagnosed and probably didn't get the right questions asked before leaving her office. I have Crohns disease as well and allergic to gluten. I have been to Fredericksburg many times for my wedding anniversary and could see how isolated that would be for you health wise. I'm supposed to see a hematologist for second opinion, but it's not til July 9th and I don't know if he's familiar with aps. I wish you luck and I'll try and follow you, I'm new to all this.

  • @determinedandstrong I'll share what I learn every step of the way. I see my PCP tomorrow the rheumatologist the end of July. :)

  • Hi and Wellcome to this friendly site,

    Do you know if the Rheumatologist and the Hematologist (who you are seeing for second opinion) , are both familiar with APS as this is very important for you.

    Did you have several antibodies to APS positive? She has told you are primary APS. You have Crohns disease also which i guess you told her.

    If you still have bad symptoms (your are taking baby-Aspirin) I think you should tell her before you see your Hematologist on July 9. You did not mention what symptoms you had.

    I suggest you read "Sticky Blood Explained" by Kay Thackray. It is a very good book about APS. She has the illness herself and writes about the different symptoms of this illness.

    Stay on here also.

    Best wishes from Kerstin in Stockholm

  • Hello thank you for responding my anticardiolipin Ab, IgM was 60 High and my RPR, Rfx Qn RPR/confirm TP Reactive 1:2 abnormal high, I don't know what all that means, but started feeling bad about 3 months ago like I was going to have a stroke, couldn't think clearly, and then I started waking up in the middle of the night with my right side numb and then everything turns black and I would lose my vision for just a bit heart pounding and before all this my calf has been sore like cramping, having a hard time walking on it. It went on for a couple of weeks and then seemed to be ok and then it started attacking my heart it was beating sluggish on and off and my calf once again was hurting, I had a venous doppler done twice but both times my leg was no longer in pain. I don't know how clots work, can you have small ones and then have them dissolve. My doctor thinks I have superficial ones but I'm not so sure about that. My symptoms now are calf tightening up just a little my right arm hurts front of elbow area for no reason, I didn't hurt it, my hands and feet are tingling and go numb sometimes and cold. Overall feel like I'm developing another clot. I left a message at her office but haven't heard back yet if I get worse I'll go to the emergency room. The hematologist I'm seeing supposedly has experience with aps. It takes forever to get into see a doctor besides my cardiologist, I'm thinking I should go see him but he couldn't figure out what was wrong with me, so probably isn't familiar with aps.

    Thanks again any information is greatly appreciated.

    Determined and Strong

  • Hallo again,

    I think you should post your own question on this site as you can have better and several answers that way. Do it soon also.

    I do not know about your number of Cardiolipinantibodies as they are quite different in Texas as here in Sweden. Anyway the numbers are not so important.

    You have APS for sure. You need a Specialist. We are no doctors but I had the same symptoms as you have .

    Call the doctor again (the one you left a note who did not answer your message)!!

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin what did they do for you, since you have the same symptoms? I'm curious. Yes I have aps for sure.

  • I was on baby-Aspirin at first when I had those TIA (symptoms like you).

    Then i got worse and the doctors (several of them) told me I had to take Warfarin. I did not want to be on Warfarin (ratpoisson! I thought).

    Then I read "Sticky Blood Explained" by Kay Thackray and she had exactly my symptoms. Then I knew I had APS!!

    After one day the neurological symptoms started one by one to go away. I could not Believe it. It was a miracle. I still have other symptoms but not those and bad hearing and tinnitus is still there. That has already been damaged by the Micro-embolies. These are not often seen on an MRI because they are so tiny, as the clots. But they do the damage so be careful.

    That is why I try to tell everyone here to try warfarin. I had very high antibodies (all 3 of them) also and I am said to have primary APS. We have to high INR (around 3.5) and keep them steady to maintain our good result from Warfarin. I selftest and I am between 3.2 - 3.8 in INR.

    I only yesterday read what Prof Hughes (the only doctor in the World who knows APS from the bottom and long enough also), says about being on a high INR and also selftest.

    Best wishes and get an APS doctor!! That is the most important. He knows what to look for.

    Kerstin in Stockholm

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