Sticky Blood-Hughes Syndrome Support
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So Sick of Warfarin & Too Low INR'S! Way too low! Plus docs playing GAMES!

Hi It's been a couple weeks I think! My memory getting worse! After Dec.20th Hosp stay, I started Lovenox 100 mg and Plavix and 10 mg Warfarin for 5 days and 15 mg on Monday and Friday's? This was told to me by local HEMOTOLOGIST, who thought 2.1 was therapeutic wen I arrived to Hosp wit micr emboli seen by about 3 docs & a few nurses, cuz I was talk of the town cuz the ER DOC I LUCKILY GOT NEW about APS AND ordered Heperin immediately! Then since it was SUNDAY I was unable to get in touch with my Hemotologist and texted my APS Specialist and Dr. Cromwell helped me ! I'm getting a few mixed msgs from Doc Cromwell, but may plan to let her b doc to manage my INR! My last INR was 1.14! After it went finally to 2.9! Wen it went to 2.9 Doc D my local Hemotologist cut off Lovenox and Dr. Caroline Cromwell agreed with him! Of course then since she's in agreement with Doc D, I listen then go off Lovenox as both Hemotologists Reccommended and I o down to 1.4 and Doc D says my doc is irritating! Also asks if a nurse is managing my INR's? So as per both their recommendations, I go bak to LOVENOX and warfarin and my constant Plavix! Now I am at 1.14 and Doc Cromwell sez I've told u b4 u may have to go on long term shots! I say ok to her! The ask doc D, actually thru his nurse if he'll reorder thru Internet if he'll renew my script for Lovenox and was told by nurse yes! I just had called to c if their were any refills on my Lovenox and I got 30 well needed shots! I CB my PHARMACY and he only renewed the Warfarin! That's telling me he's NOT agreeing with my at least 2,5-3.5 limit! When will any of them get it!??? Now I await to go c my Rheumotologist in Hospital for Special Surgery on Wed January 27! Can't wait! I knew I'd be one of the difficult patients, that's why my docs dislike me cuz I'm difficult! I hope and pray I'm being too sensitive with Dr. Cromwell's answers! However, on my first visit with her she did say she was ok with my INR'S being between 2 & 3. My sis Nanny 23 heard her too! So glad she was there to hear and not agree with her levels either! She changed her mind I hope wen my Doc D thought I was therapeutic at 2.1 while in ER with docs seeing that I was throwing micro embolis! Wow Finally! I'll be very upset this Friday if doc D says he won't manage my INR'S at those hi levels cuz he said it won't help my pain by being higher! He was one of my first Doc 14 yrs ago that didn't say "IN MY HEAD." I already am emotionally attached to him! He also as a kindness came to just visit me in The hospital wit my first tummy surgery, just to pay his respects and condolences to me, for my BELOVED WONS PASSING! I can't let that go, cuz what doc actually does that! I will tell him on This Friday's that my APS DC AND I DISAGREE WITH HIS METHOD OF MANAGING NY I NR'S! What u think! Do I lgo by what my APS specialist sez till 27th of Jan an

new a Rheumatoid APS doc ills opinion! I HUS I'll try all of the above! I'm on the a LI

4 Replies

HI, keep calm and keep pushing you will get the right drugs package for yourself, do not rule out buying them some books to read, I did that. I sent two particularly slow to react medical staff books written by Professor Hughes himself, plus of course the link to the charity. Try and always attend appointments with somebody articulate who you trust to firmly and politely state your case in detail. MaryF


Thx Mary! I'm waiting for phone call from local Hemotologist! I told office manager doc D was supposed to let me know what doses of coomadin I'm suppose to be taking! Still waiting! I'm about to give up the ship! I go on Wednesday to Hospital For Special Surgery that the Charity sent me to! He's only doc in USA to have a Unit with many SPECIALISTS THERE! If he don't work, I will just stop it all and give it to God! I'm just too sickly to move ! I woke up yesterday knowing I was not right! An INR OF 1.14 in all that medicine is rediculous! Why am I so difficult! Y can't it be easy and I'm done! I've had it and feel let down by med profession! Pain beyond belief all day everyday! I'm sooooooo very tired! Kirsten did say to read sticky blood and I did! I am reading More sticky blood and find that enlightening! Thx for the suggestions! Reading does calm me, but I'm angry, depressed and disappointed!


I can understand that. There are so many members I have heard say that they just so tired of everything and the doctors do not understand ..... Please do not give up!



Hi i understand were your coming from i am in the same position as you for some reason my INR since end of December has been dropping i am taking 50mg daily and my target range is 4.5/5 as i have had so many clots , i am so tired all the time but all i keep being told is to keep going it will rise soon !!! I have had bloods done this morning just had a call from GP saying its 1.3 yet Monday 1.1 i dont understand why i have been told i have proberley become warfarin resistant . i have tried some of the new drugs but had very bad side affects so was told to stick with warfarin i am waiting to see my consultant in Feb hopefully he will try something else.


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