Feeling frustrated

Went to see my professor yesterday , told him of a few incidents I have had , fell down stairs last week and fell on Friday and banged my heads, ended up in A&E , my memory is is getting worse and I mean worryingly worse , he has stopped me driving again and sending me to see a neurologist and said is there any dementia in the family 😡. He said my NRI was fine at 3.1 . I feel like I'm going backwards again x

18 Replies

  • Maybe you need a higher Inr, I had a terrible battle to get my haematologist to raise my range. It used to be 2-3 and it was usually 2.5 which he considered ideal. The problem was I kept having dizzy spells, fell over in the shower and then got really bad vertigo. I kept my Inr at 3 so top of the range and started to feel better. He did eventually raise it to 2.5-3.5. I've since kept it at or above the top of the new range, currently 3.9 and all of those symptoms have gone, just have to convince them to raise my range now. The Pharmacist who checks my Inr and dispenses my Warfarin is on my side which helps, so I do plan on keeping it where it currently is, Just have to convince the Doctors I'm right.

  • You know when I was on 8 mg a day it gave me a NRI of 3.8 and I felt great then the Warafrin nurse lowered it to alternate 7/8 and its plummeted and I feel rubbish it goes to 2.7 some days and I feel awful

  • Hi, what is lnr please? I have been diagnosed with lupus but dizzy spells are a big problem for me and whatever you have done sounds like it has helped you. I would appreciate any advice you can give. Thanks

  • My NRI should be 3-4 but ranges 2.7 - 3.5 but it's very rarely 3.5 x

  • Antiphospholipid syndrome makes our blood too thick and very prone to clotting. I'm on Warfarin to make my blood thinner. The Inr is the test we have regularly from weekly to 3 monthly depending on how stable it is. So the lower the Inr reading the more easily the blood clots and the higher the reading the less likely it is to clot. It's a very fine line we tread trying to find our optimum level. Too low we're prone to clotting and too high we're prone to bleeding. Inr is only applicable to Warfarin users.

  • Thank you for taking time to explain that. I will ask my doc about that .

  • No problem x

  • Hi Amy

    I agree with the previous poster, many APS patients need to have an INR higher than medics normally expect to keep it. When I was on Warfarin, now on Fragmin, I needed an INR around 4.0 to feel reasonably symptom free. If my INR fell below about 3.3 I started to feel bad and I injected Fragmin and increased my Warfarin dose until my INR was back up.

    You perhaps need to pay to see one of Prof Hughes team at The London Lupus Centre and get them to support you having a higher INR level.


  • Think a trip is in order . I feel like I'm going mad with this brain fog , my life is on hold .all they keep saying is no you might have a bleed if we put it up x

  • If your brain fog is that bad you should take someone with you who can speak up if you get confused or lost for words. I took my son with me last time, only because I have a leg injury, but he joined in the conversation and supported what I was saying and the Doctor suddenly agreed to raise it. Yeah exactly what mine said re the bleed which was why I did it first and told him afterwards.

  • You must also get your Thyroid checked as this can also add to the brain fog and other symptoms if you are not in range with that, so would make you other conditions worse also, plus vitamin D and B12 and iron being checked, I agree you may have to push your range up with INR, but a good idea to check these also. MaryF

  • I don't have a thyroid gland Mary , I had it removed , I take thyroxine instead , o have started taking iron tablets at lunch times and take a b12 bit daily but will suggest to my dr about bit D x

  • Yes iron needs to be 4 hours away from thyroid meds! However thyroxine does not always work effectively for everybody and the TSH test is not a very good indicator which is why I do other testing. MaryF

  • Had my thyroid checked today and it's bob on what it should be

  • Was it just the TSH test? If so, not a very good test, I do mine privately which is irritating but necessary. The tests I do are far more indicative that the TSH test, I also am a paid up member of Thyroid UK, and also use their forum on here. MaryF

  • Hi Amy,

    I agree with Dave! I am still on Warfarin with an INR between 3.2 - 3.8 and i take a Fragminshot if the INR drops below 3.0. I selftest and feel best at an INR of 3.8.

    They do not understand our situation that we do not bleed from this illness but clot.

    Try to get to the Lupus Center as suggested by Dave or someone who knows about APS.

    Kerstin in Stockholm

  • Do you take Hydroxychloroquine as well as warfarin although it didn't do much for my memory it really helped with my balance and cognitive problems.

  • Oh don't get upset, we all have bad times. Things will improve soon I'm sure.

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