APS/Lungs

[Nocr]

Was diagnosed in ICU in August 8, 2017 and for the next almost three years I threw clots like popping popcorn. Trying every medicine including warfarin and was still throwing clots. So it was time for me to do my own research and get this under control as much as possible before I had any more strokes. My INR needs to be between 3.5-4 because I threw multiple clots at 3.3. I am taking warfarin 10mg daily but very concerned about the later side effects os such a high dose. APS attacks so much of the body including Hughes Syndrome, Lupus, brain fog and so much more. But my biggest concern seems to be my lungs are being attacked by APS. Is anyone else having this problem and could you give any suggestions please to help me. Thank you all

[Nickisax]

I continued to have strokes and TIAs on Warfarin and was swopped to Clexaine. After still having a further stroke a daily aspirin was added and have now gone for three years without clots.

[Nocr]

Thank you!! So your not having any lung problem? My lungs is giving me a fit shortness of breath and weak. Thank you again

[David-Nisbet]

I have been taking 9/10mgs of warfarin daily for over 20 years. This keeps my INR relatively stable at about 2.5. Not aware of any side effects from this.

[Nocr in reply to David-Nisbet]

Ok thank you so much!!

[GinaD]

I gave been on warfarin for over 20 years. Taking that med was like pushing the " off" button on my clots. But fatigue and brain fog still came and went. Then I accidentally discovered I was gluten sensitive and went on a total gluten free diet. The brain fog and fatigue vanished, as did all those positives on my APS blood tests. All those APS tests have remained negative ever since going gluten free in 2004. It is a free treatment, and the presence or absence of gluten in diet has no effect on your INR. so... you might try a gluten free diet for a month or so and see if things improve. But if you try this, you must be vigilant reading food labels. And also, Dr Hughes regularly advised his APS patients to go on a gluten free diet.

[Carbisbay]

Hello.. I have taken warfarin for 13 years and my dose in normally 10/9mg. It has increased to 11/10mg. My INR is more stable with the higher dose. My target is 3.8. I made further clots previously with a range of 2/2.5. So I keep well above 3. I self test which is a godsend. With the support of my gp. I understand this isn’t always possible for everyone. I’m not aware of any long term side effects. Since having PEs my lungs have been quite weak. I have built up with daily walks really slowly at first and increased my exercise. Yoga with breathing and a little cardio. It’s definitely helped my lungs. If my warfarin is low I’m breathless and feel quite unwell. On these days I rest until my inr comes up and I feel ready to walk and practice yoga. I hope over time things improve for you. It’s very individual but somehow we navigate through.

Best wishes

[Lure2]

Hi,I live in Sweden and have primary APS, tripple-positive with very high titres all the time.

I have taken Warfarin since 2011/12. As I have had microclots and microembolies they have not seen anything on me on Scans etc and therefore I did not start Warfarin as early as I should have done. I had TIAs and a lot of neurological symptoms before anticoagulation.

I take 5 mg Warfarin a day and eat greens also every day.

I have had Pulmonary Hypertension since before I started Warfarin and have an Ecocardiography on my heart and lungs every year.

I have also 2 leaking heartvalves and leftsided heartproblem but with Warfarin at an INR at 4.0 I feel fine.

I have very good Specialists here who take care of my symptoms.

Be sure you talk to a Specialist who understands APS and that lung-

and heartproblems can go with APS in some rare cases.

Be sure you do not also have high bloodpressure. I can tell you that I can exercise and have no breathlessness with my Pulmonary Hypertension but I selftest rather often to keep my Warfarin around 4.0.

I call Warfarin "my lifesaver" as that is what it has been for me.