Sticky Blood-Hughes Syndrome Support


I wondered how many of you had any experience with immune-suppresents and if so which one. I did notice on reading thru the site that they are sometimes used to treat APLs but when I asked my GP about it yesterday he said they would make me worse. In fact I dont think I could feel worse at the moment as Ive got all my aches and pains aat full strengh but when I had my INR measured it was 1.1 . Do you all feel better when your INR is highwer?

4 Replies

Hi there

Your INR is incredibly low for someone with APS and, in fact, any condition which requires anticoagulation. The usual INR range for someone who has atrial fibrillation or heart attack with no underlying cause is between 2-3. Most APS patients keep their higher - between 3.0-4.5 - the idea is to keep it as low as possible (to avoid a bleed) but at a level where you are relatively symptom free.

I would look into this first before you go down the immunosuppresant route - these meds are more likely to be used in the treatment of lupus but the sometimes steroids can be helpful in the short term.


Thanks for your reply. My INR can be very irratic from as low as it is now to the highhest Ive had which was 6.8 . I was told initially to have a range of 2.5 -3.5 but my doctor has now said I should have 3.5 as a minium as Ive had 4 clots in the last 7months including 3 when i was on warfrin. But having said that every doctor I speak to gives me a different story which is why Im asking all these questions on here so at least i have some clue when i speak to them. I am seeing the rheumy tomorrow so hopefully he'll actually know something about APLS once again thanks for your reply


Hi margaretjo,

welcome to the group my INR is like a see saw and it is difficult to get right but i have found when my INR is over 3.5 i do feel better but when it is low it is a pain, i hope you get some suport.



Hi Margaretjo

I agree with the comments above. My INR was very hard to control and I am now taking Clexane Injections as an anticoagulant. If you are experiencing clots and serious difficulties on warfarin it may be worth asking about heparine injections? I am on two different immunosuppressants but I have a transplant and Lupus too, happy to talk about treatment if you feel it would help once you've spoken with your rheumatologist.

take care



You may also like...