Hello everyone

Hello,my name is Becky,I have APS/Hughes Syndrome,It was discovered in 2010,I have a DVT in my left leg,I had a Tia in 2013,I will be on warfarin forever,I have pain and swelling everyday in my leg and have been told there is nothing else they can do for me except keep my blood thin,I try to stay positive but some days I just can't do it.I left my job in July 2016,I could not handle the pain ,so now I'm without health insurance but I still have my Inr checked monthly.

33 Replies

oldestnewest
  • I'm so sorry you're going through this. Please don't roll over and give up.there are many on this this site ackknowledgs

  • Thank you,I won't give up,it just seems some days are better than others and today was not a good one,tomarrow will be better,have a great day

  • are you able to walk on level ground ?

  • I am able to, sometimes I limp and I can't walk for a long time

  • I am starting my GYM work out this week-- will have to see how i do , getting pretty old for this stuff to start again !

  • I was going to a fitness club for awhile but then the pain became unbearable in my leg so I don't go anymore,I thought about just swimming but last summer it seems like my skin no longer likes the sun,

  • I am very sorry you feel so bad now!

    I wonder at what therapeutic range the Specialist (hope you have a Specialist of APS) has decided for you? If it is too low (under perhaps an INR of 3.5) you can still get all your symptoms back and the anticoagulation is worth practically nothing.

    To test your INR in the vein at a hospital (do you test in vein?) only once a month is too seldom as our INR goes up and down a lot.

    I understand that this was not good news but this is no doubt your way forward so please talk to your Doctor about this. Show him what Prof Hughes says about INR and bleeding and clotting as we are not "ordinary" patients. We have very thick blood!

    Please stay with us and let us hear how it goes for you. Good Luck!

    Best wishes from Kerstin in Stockholm

  • Thank you for the information,unfortunately I have never seen a APS specialist(I was diagnosed by a hematologist ) I can't seem to find a APS / Hughes Syndrome specialist, I actually saw a video on YouTube today where Dr. Hughes said my INR should be between 3 and 4 right now we keep it between 2 and 3 and it usually runs 2.4 -2 .5 so I'm going to definitely speak to my doctor about this, if my blood is either too thick or too thin then I go in every two weeks but if it's like say 2.5 then I go in once a month,I have read before that having your blood drawn from your arm is better I spoke to my doctor and she said it didn't matter from my finger or arm it would be the same ,so she almost refuses to take it for my arm,I also read about thyroid and kidneys today,I am going to request she tests those , sorry for the long post. Have a great day

  • Where do you live? You should try to find a Specialist (usually a Rheumatologist) somewhere as it is so very important for us as our blood is the key.

    Read also "Sticky Blood Expleined" by Kay Thackray. A good book to understand our illness also for relatives.

    Kerstin

  • Hi there and welcome, where are you located? This will help you find a consultant that understands the condition more thoroughly. MaryF

  • I live in the United States,Marietta Georgia

  • Maybe do a new post asking who knows the nearest to your area! Often for the USA it is localised knowledge on here, best of luck. MaryF

  • Thank you

  • Duke University not far from You ???

  • It's about 6-7 hours,I looked it up on gps,do they have a APS/Hughes specialist there,it would be worth the drive if they could Help me

  • I'm gonna research it,thank you

  • Kerstin, can u tell me how to private message someone on this site? Plz & Thank you

  • I can't believe all the information I have learned today,thank you so much,I have seen a rheumatologist a year ago for a rash on my leg ,(That I still have)he had no idea what was wrong and said I don't have to go back to him but I have been having so many issues (dizzy,light headed,various vein all of a sudden went flat,my lymp nodes are now swollen,I'm So tired no energy) sorry once again a long post ,I am just so surpised at all the information pointing towards APS Thank you again

  • I live in the US,Marietta Georgia close to Atlanta

  • The rash on your leg could it have been "Livedo Reticularis "(look it up) which is "a sign of APS" I have read. I have perhaps read it from a book by Prof Hughes but I am not sure it could have been from someone else. I had that before I was anticoagulated with Warfarin. Nowadays never more.

    You could also put a new question here and ask if someone know a Specialist around Marietta Georgia, close to Atlanta.

    I know they are working on Specialist-names for the US on this site but they are not ready yet. We know how difficult it is for you.

    Yes the more you learn and the more you read you understand how much has to do with APS. I also know that prof Hughes himself was surprised that his patient was free from symptoms after Warfarin (a proper anticoagulation in that case) on symptoms he did not even imagine were caused by APS.

    Best to you from Kerstin

  • I do have Livedo Reticulatis,but I believe this is differnt,I would post a picture but not sure I'm allowed to

  • Hi Becky, I'm so sorry to hear ur news. If u pm me I will give u my email address and show you how I am fighting to raise my INR. Since joining this site I have gained understanding and the strength. (Thank you everyone. )

    I am happy to e-mail you a copy of my letters that I've written to warfarin clinic, anti coag specialist, GP and my Rheuatologist. Along with advice and other evidence they need to give them the proof and confidence they need to raise my INR. 💋

  • Thank you so much Wendy Woo50 my e mail is beckyr24@yahoo.com

  • Have you experimented with a gluten free diet? There is a theory that a leaky gut and an undiagnosed food allergy is often the root cause of autoimmune development. Discovering I have celiac and starting GF diet did not totally erase myAPLS, but my symptoms lessened and I was able to lower my INR from 3 to 2.

  • I have never tried that

  • Sorry you having so much trouble. I live in Louisiana. I got back from the Cleveland Clinic Friday night and almost got stuck in Atlanta with the weather. There is no specialist here so I went up there. The dr at the clinic said the same thing as I been told on this site about my INR. It was 2.7 when they tested it and he said it needed to be higher with Hughes. I have learned a lot from this website.

  • Yes Scottc,still very icey,I am happy you made it home safe, you found a specialist in Cleveland? I think I found one in Minnesota at the mayo clinic,but it's to far to go to,I am definitely going to show my Dr the videos I saw on youtube,I hope she will watch them.I am almost excited to raise my Inr to see if I feel better.

  • Yes, my dr here recommended the Cleveland Clinic. I was very impressed with Dr and the clinic. The dr there said he might send me to another dr up there depending on my test results. I will let you know if he sends me to another dr up there and anything I find out that might will help. My INR was 2.7 at the clinic last Thursday so they raised my warfarin and I have a target of 4 now. At 2.7 I feel really bad.

  • I'm sorry you feel bad,hopefully raising your INR will help you,I would love to hear what you find out,I'm talking to my gp this week to see if we can raise mine it was 2.5...hope you feel better

  • I talked to the dr at the Clinic and my target is 4. I can't remember the name of what blood test he did but he is sending me a letter to me and my dr here. When I get it I will let you know. He isn't going to send me to another dr which was a vascular dr. You might what to check with a hematologist in Atlanta and ask if they deal with Hughes before you go to up there. If you go to Cleveland I can give you the name of the dr I saw. I know my dr said he had better luck at the clinic vs the mayo. You can fly into Cleveland and take a train downtown then take the medical bus to the clinics which is $5.00 each way. I would recommend getting a week pass for $12.50. I stayed at the holiday day inn clinic which was $131.00 a night. Just check your insurance if you need a referral. I wish I could remember the test which tell the percentage you blood is clotting.

  • I see a Hematologist here once a year,but he sent to a rheumatologist last time and he was not very informed about Hughes,thank you for the information I currently have no Insurance so I'm just trying to handle this till I can get some

  • I went and had my INR done,its 2.1,I see a head nurse ,I explained everything I have learned ,I also was gonna have her read some things ,she would not listen at all,she said I could have a major bleed out of we kept mine 3.0 to 4.0,I said it's different with me and she said no Dr would ever keep it that high,Iasked about other APS patients they do not see anyone else but me with APS ,all other patients are heart paients,now I have to make a appt with the Doctor to discuss everything,but I'm pretty sure I made her mad,I wasn't trying to tell her how to do her job just suggest we try to,its my health ,I'm the one that feels like crap all the time ,sorry I didn't mean for this to so much complaining,I as just so excited to try a higher inr maybe feel better

  • Hi beckyr24,

    I know you live in Marietta, Georgia in the US. You have not got an APS-doctor and your GP wont give you a higher INR. An INR of 2.1 is too low.

    You can not imagine how well I understand how you feel now and that you also want a higher INR (which you have found out is important for us). I can not feel exactly of course but so many of us has felt stupid and sad and angry and crap.

    Is it possible for you to try and find a Doctor who could suggest a Doctor specialized in autoimmun illnesses like Sjögrens, APS, Lupus. That head nurse just treat heartpatients with an INR between 2.0 - 3.0 and do not understand that we have thick blood and clot but does not bleed from our thick blood. I feel best on an INR around 4.0 (vein-test).

    I want to wish you luck and please stay with us here and tell us how it goes for you now.

    Kerstin in Stockholm

You may also like...