An INR so low with meds! Depressed, d... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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An INR so low with meds! Depressed, disgusted and pain beyond words!


Why r some people so hard to treat this disease! I'm just exhausted! I go Wednesday to Hosp for special surgery! I'm just disappointed in med profession! It's awful! Still waiting to find out what and how much Warfarin I shud take! All I know is I Gota take shits for long period of time now, so my APS SPECIALIST SEZ! My Hemotologist just don't get it! I just can't be giving up on him! Fourteen years a long time! When my son Jesse passed away , age 24 ! I had a colostomy tummy surgery!i had diverticulitis bad! Does tummy problems go with AOS? I've had them dice age 4!!! No one ever found out bak then Wat the problem was??? Still don't know y! I'm perplexed and reading MORE STICKYBLOOD BY KAY THACKRAY! Kerstin, I find this very enlightening!

6 Replies

Hi Deb,

Glad you liked the book! If your Hematologist does not understand APS so good and you can not communicate with him you just have to get another Specialist.

If you are going to be on Warfarin it is important that you keep the INR in the right spot. How much Warfarin you take does not matter so much. That is individual but the INR is important and that you cheque it more often if it is too low or too high.

Best wishes to you and Good Luck!



If the Warfarin is not suiting you, you will have to perhaps be tried on something else. MaryF

Hello Kirstin! I think f ou every dat my dear! Thank ou for those books! The second book, I find very enlightening! Mine and your struggles r real!!! I can't wait for this Wednesday! I'm thinking a Miracle will happen! I know it won't, but it's nice to feel a bit hopeful under my circumstances! I just don't understand WHY in all that medication that I havea1.14 INR!!! What would be if I wasn't on a thing! I hate to think of it! I know I ma sound a bit impatient, but I know and feel Blessed to have you and all here to talk to! Sometimes I just need a bit of reassurance! Where there is life there is hope! How r you doing with your APS? That headache I woke up with meant something! I knew I was not coagulating correctly! Do you know why this happens? I trust our judgement!! Godspeed!

Thank you Mary! My APS DOC IN NYC has said I must stay on LOVENOX long term! I hate it, and really don't mind the shits, cuz I have sooo very much scar tissue from six stomach surgeries, that m skin is numb! I keep loosing weight! No appetite! The pain takes away my appetite! I must ask you does stomach problems come with APS! As a child I was always in Hospital due to tummy problems! They always said it may be her appendix! Cuz I'd have hi fevers and throwing up! I have a photographic memory, therefore I recall things in color since I'm 2 years old! Sometimes it's good, sometimes not so good! I can't 4get anything! I'd leave hospital as I went in, unknown, plus FYO's/ Fevers of unknown origin! Always leg and hand pain due to JRA/ Juvenile Rheumatoid Arthritis! I wonder if the 2 go together with APS? Thank you Mary, it's always good to hear from u too!

I think they must be connected as I have diverticulitis, APS,RA+Fibromyalgia. You think you are bad yourself until you read about people like you.I would change the hematologist.with me I see just one person who specialises in RA and APS etc

Connection,....... wow I replied a few minutes ago to the message you sent me Deb,(BEFORE I READ THIS POST) and was telling you all about the new drs and also about me having diverticulosis, and a few bouts of diverticulitis, which they put me on Flagl and cipro for the attacks. Now I have a new GI dr and is ordering a colonoscopy. This is food for thought, wondering if there is a connection somewhere. I have diverticulosis, APS, MS, Lupus and Behcets. I don't know if th GI problems are auto-immune, but the others are.

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