I feel dreadful!

Almost two years after moving 1500 miles, and having to find new doctors, two months ago I finally got into a rhematlogist. It is unbelievable that in the area of the US where I now live, there is only one within a 150 mile radius. Well what has happened is, he suggested that my INR should be reduced back down to 2-3, it had been kept at 3-4 for close to 8 year. I feel worse everyday. My leg that had the clot now swells and aches, my muscles and joints ache, my headaches, it just goes on and on. I feel dreadful! I was so active despite the fact that I also have MS, dx in '86 (relapsing/remitting), fibromyalgia, 2 total knee replacements, lower back surgery and of course the clot in my right leg resulting in 2 PE and dx of APS 9 years ago.

Some things I have read suggest that reducing my INR may be my problem. I need some input please. I thank you for any suggestions.

God Speed, Barb

9 Replies

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  • Hopefully others in your country will come on and help. You may have to try new one unless he can be calmly up to date. I hope you feel better and plenty of support on here. Best wishes Mary F

  • Hi Barb,

    Welcome to the group i hope you get all the information and support you want and need, information and research has shown that if your INR is low symptoms do come back as mary said may be worth looking at getting new person. Prof Hughes suggests a INR of 3.5 above.

    pllease do let me know how things go

    thanks

    Paddy

  • hi bjf- im also from the states, by the look of your map i think i know where you are?it sounds to me with all you have going that there is alot of commen ground as i read your note, as i also have a number of things going, i know i may know what you are going thru . if i am correct you do have some very competent dc s .around you. im in n.h. . if you want to conferm where you are i wont tell anyone ? i promise--- back lets talk ---------------- jet

  • Hi barb

    welcome and glad you found us. Sorry you're rheumy lowered inr, sure jet will give some good info on docs.

    My symptoms get worse at lower inr, so do lots of others on here.

    Here when you need us.

    Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • Hi....your problem seems to be quite the norm. I am in the same boat...as many of us are.

    For some time most docs thought 3-4 was great...and I think when then the recommendation was 2-3 but each case should be evalutated seperately. I believe that when my doc read that INRs should be between 2-3 for APS patients he took that LITERALLY.

    I WISH these docs would treat the patient....and symptoms. Studies are needed...but when you have soo many patients saying that our lower INR's make us go backwards...I would think they would listen.

    Something needs to be looked at with this....I feel that so many of us suffer without needing too because our INR is too low! To me....its not rocket science....I feel like docs should give a higher INR a trial and see if it works for you. Mine wouldnt...so I will start injections soon.

    Where are you in the States? I live in Ohio and am searching for a good doc as well.

    Beverly

  • Thank you all for your replies! I truly think he should have known more about me and why my former doctor, who was a hematologist and the one who dx APS, put my INR up to 3-4 in the first place. This is an issue I intend to address with my GP. After all it is my body and my life, I'm just so upset. Thanks again. BTW I am in North Dakota.

    Blessings, Barb

  • Hi

    I am unable to work (function properly) with an INR less than 4 I try and keep it at INR 4.2 to 4.5. My range is granted at INR 4 to 5.

    I proved that INR 2 to 3 was no good to me, I know how you feel and I think its worth pushing to try getting your INR a bit higher at least as a trial...

    Good luck

  • hi bjf- boy was i off the mark on you location !! i was thinking N.Y. just outside the city. ill keep the dc, thing on mind . sorry not much help ? be talking with you in future------ jet

  • Just wanted to update all you lovely people. Since I first posted I have seen my GP and he listen to all I had to say and agreed to up my coumadin. As I'm gradually achieving an INR of 3-4 again I am feeling so much better. There needs to be so much done to up the awareness of APS in the medical community. I pray each day that this is acheived and that I am able to do my part. Thank you all so much for your support and input, I am truely grateful! <3

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