Do we have Flares?
10 days ago we were in Colorado and I felt like my old self, when got back checked INR it was 5, so of course the hemo doc adjusted and I dropped below 2😩it has been awful trying to climb back up, horrible anxiety, vistibular migraines, brain fog and this time worst fatigue ever! Lupus is in remission!! So do we have flares and could this be one? Still feeling very off and my INR was 3.8 today🤨
Yes that is what happens to me -and i also turn as red as a lobster on al or just parts of my body .
Flares ...... I do not know, but I think that when we are not at an INR where we feel good (properly anticoagulated) , our symptoms return and we feel bad. You could call that a sort of flare, I call it too thick blood.
Kerstin
Yes flares are a feature for me, however, it is difficult at times to work out where one of my diseases is misbehaving! MaryF
Yes flares happen. Causes? Low INR which can prompt the immune system to think that an invader is back, or allergies, or, as I sometimes joke, someone sneezed on the grocery aisle right before you and you steered your buggy right into their discarded micro organism crap. And I just heard today on yesterdays "Regain Your Brain" series that some people experience inflammation associated with commercial flights due to the altitude change.
I can totally relate to this my inr has been all over the place from a year and now possibly getting taken off it.
They blame some of it on my fibromyalgia but slowly learning this may not be the case.
I'm getting terrible flare ups too because of it.im really struggling to lose weight as well as other things don't know if this is common or not x
I know you live int the UK. I live in Sweden but been on our site for several years.
I wonder if your Hematologist is knowledable of APS....(?) I hope they will not take the anticoagulants away (must never do that) and Warfarin is the best we have if we learn to manage by selftesting and control of what we eat etc. If we are triplepositive it can be difficult.
Fibromyalgia is often misdiagnosed and can, as you say yourself, be APS. You must be in control of your anticoaguatlion to feel good with your APS.
I'm on warfarin but so unstable the doc knew nothing about it, it was that or go back to nothing as no clots. I could have cried feel so let down. Thinking of going private for a recommendation on what to do with my meds and why I'm getting so poorly. My fibro was manageable before aps and now feel awful I'm out of range 70% of the time which leaves me unwell just not getting the answers I want. I said to her about numbness and weakness and all she said was it's a.maybe if comes back clear from Neuro which I have December. Feels like miles away just to get some help
You must learn about APS. Also you must have a Specialist of autoimmun illnesses who really knows these illnesses. That is so very important for us. You live in the UK and I think it should not be too difficult to find a knowledable Doctor.
How many antibodies are you positive to? We test 3 but we can have the illness just on even one positive.
Sometimes, if you are unlucky, the Neurologist (who you are going to see in December) know nothing about this illness as it has to do with thinning the blood to a properly and stable INR if we use Warfarin.
You can go on having Doctors who give you the wrong diagnose perhaps and the wrong drug if you do not find the Specialist for our APS.
Probably you have had APS for a long time but thought it was Fibro and now you need a stronger anticoagulation as the "Fibro" does not behave. We get worse if we are not anticoagulated in time. This illness atacks a lot of organs when the blood is thick.
Start looking as soon as possible for a Specialist who understands what you are telling me!
I have no clue about anti bodies, I'm definitely going to research it but when I came back at her with stuff I've read all she said was possible. I think my fibro was misdiagnosed for aps I've been diagnosed about 18 months ish and because I didn't know anyone with it or find the right places to look for info I was going on the doctors word. I'm going to try and find a doctor who knows more or go private and get recommendations for it but equally can't afford to continually use them 😔 our nhs is amazing but hasn't got all the resources we.need.
I will ask the UK people where is the best to go in the south and get a referal if possible. Thank you for your advise
You can get diagnosed by symptoms or by antibodies. Important to know which antibody (if any of the 3) you have positive in your blood. It must be possible for you to get a Specialist in your own country of Hughes Syndrome as it is so very important for you also.
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