Sticky Blood-Hughes Syndrome Support
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Sorry me again!!!!

I’m so sorry but Just a quick question? When I was on warfarin, my INR had to be between 3-4.5 depending if I had d-dimmers or Thrombosis, that’s when they preferred to keep it around 4.5. I don’t know where on when (brain fog sorry), Now I’m on Riveroxoban, but is riveroxoban enough for me, as I recall something about people who’s INR has to be high, riveroxoban is not enough. (I did had a DVT on a 4.2 INR). Or have I misread it??

Kind regards to all

Teanna

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Do you have history of stroke? If stroke history they have not cleared riveroxaban for us.

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I’ve had 2 suspected TIAs, one of them they are almost 90% sure, the other, because I was unconscious for over 9hrs at home alone, the indiacations showed that it was a possible side effect of an antibiotic reaction and that 1 in millions can suffer a TIA and I showed signs of, plus a PE & a DVT.

So on my notes it has 2 TIA’s ?

Thanks for replying

Kind regards

Teanna

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Rivaroxaban has been approved for patients that have had a previous venus clot and who have an INR 2-3 only.

This oral anticoagulant is not suitable for anyone who has had a Stroke or needs an INR 3-4 or more.

Are you getting any symptoms?

Probably best to ask your specialist this same question regarding is this enough. xx

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Hi again,

Who put you on the high INR 3.0 - 4.5? You say they preferred to keep it at 4.5! Who did that?

You and your daughter need to find a very competent Specialist who have had patients like you before and who is qualified and has the knowledge to speak with persons like you (yes we are unusual) and also treat them.

If you were on an INR of 4.5 with Warfarin you should not be on Apixaban but I am not a Doctor as you know. All I know is that you two need help from a Doctor who is qualified to help you to feel better. So please do not give up.

You said you have got the name of a Specialist.....I wonder if it is a Neurologist for you hand etc or only a Rheumatologist without the speciality of autoimmun illnesses you need.

Kerstin

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What dose of Rivaroxaban are you on? When in hospital last year they had me on 10mg and Haem has me on 20mg. It took a while afterwards to get back to being 'normal' I know I should have queried it in hospital but I wasn't quite with it most of the time!

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Hi,

Thank you again for replying.

I’m just going around in circles. My daughter is trying to see another GP but becaus they don’t know enough about APS, they are thobbing her off.

Myself, I’m really giving up. Although I saw a pain management doctor on Tuesday (yes he was great), but not for my needs. He was more for controlling the opiates that THEY put me on, 6.5% over the legal limit according to the BSA. So that’s their goal. He blamed all my health issues due to opiates, how can you get APS from opiates? How can I get under active thyroid from opiates. RSD from opiates?????

But going back to the TIA’s, my right leg is partially numb, continuous pins and needles, I can actually put a tip of a needle over my legs and I can’t feel it. Even having a shower, I have to have it tepid, alsmost cold, but if I put the water on certain parts of my body, it feels like someone is pouring boiling water over me.

Because of my mum suffers from CIPD, she can’t feel her feet on the floor, so she has to look down to see were she is walking. Whether that has got something to do with my numbness, I don’t know? My dad, he dad DVTs, but the doctors refused to test him for APS, (he was going down to theatre to have an hernia, I asked his doctor can he be tested for APS, he refused and said it cost to much money to do the test. His INR levels had to be 3.5 - 4.3. But sadly he passed away and we will never know. Do as you can see there is something that’s going on genetically, but know one wants to know. I’m to complexed. So you can see how I’ve had enough. I just keep on from one to another doctor and all they are interested in is getting the opiates down, and was also told that my pain will never go, I’ve just got to live with it, I don’t know if I can.

Thank you all for listening to me again and again !!!

Kindest regards

Teanna

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Hi again Teanna,

The Doctors you see now do not understand your HS/APS. They are worried about your pain-managment and too many opiates.

You need a Specialist of autoimmun illnesses who had had patients like you before with several autoimmun illnesses and a family-history behind you. Your daughter also need such a Doctor!

I can not help you here in Sweden and I wonder what dr Cohen (was it?) says about all this? Can you not get an appointment when you talk to her secretary beforehand your next appointment, when it is I do not know.

You have to much around you and you need someone to help you out of this.

Kerstin

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Hi Kerstin,

No it was not Dr Cohen, she has nothing to do with it.

You have been a great help otherwise I don’t know what I would have done.

My GP has not a clue about my problems, as they all say “I’m too complexed”. All they are interested in is my painkillers, and some of them are to do with my RSD (CRPS). I remember when they diagnosed with RSD, they put me on 3 antidepressants and Gababentin (sorry about the spelling). The pain management team want to get me off of them, I did tell him it wasn’t for depression as he thought it was. But he was still none the wiser.

I’ll shall try to contact DR Cohen, but ive tried in the past and got nowhere.

At times I just feel like giving up and they just won’t listen, and again, this weekend I had another blackout episode, but again I get told it’s part of my condition, (what condition does it refer too)?

My daughter has made an appointment at last, but there is a long waiting list, but at least she’s on the ladder.

Thank you for listening.

Kind regards

Teanna

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It has been approved in the USA ?

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