Sticky Blood-Hughes Syndrome Support

Can antibodies come and go?

Can antiphospholipid antibodies come and go? If so, why and does this determine the disease progression/symptoms? Also, does anticoagulation affect tests for antibodies? Can a physician answer this by chance? What have you all heard about this through your experiences?

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They can come and go but it has nothing to do with progression of disease or symptoms, etc.

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The tests fail the patients, rather than the patients fail the tests etc etc. So far I have never passed a test... however had multiple blood clots and the migraines etc etc. Mx

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Hi lesley the answer is

Yes, as with other antibodies identified as factors in autoimmune disorders, levels of those playing major roles in APS--anticardiolipin (ACL) and lupus anticoagulant (LAC) can indeed vary from time to time, sometimes even falling so low as to be virtually undetectable, which will mean relying on other factors like medical history and physical examination and observation are key.

You can have other symptoms other than clotting events migrains etc these can vary and can be effected by a number of factors from how your INR is to stress, diets etc

Paddy

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Thanks Paddy...

I have experienced a huge variety of symptoms over the years and this bout is very different but I am not theraputic enough of INR.

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Hi pumpkin

have a look at this blog it shows symptoms other people have

hughes-syndrome.healthunloc...

paddy

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Hi Paddy...thanks for the link. Very interesting. I too have some of those same symptoms. I imagine one day we will all learn that these antibodies contributed to much more than what we thought!

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Correct me if I'm wrong -- but I seem to remember that some years ago it was thought that if Hughes patients antibodies dropped they could discontinue warfarin. Then several people ended up with CAPS, aka, Catestrophic Antiphospholipid Syndrome, and so now, even if antibodies fall, it is recommended that we stay on our medications.

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Yes Gina once you go on blood thinners you are on them for life

Paddy

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Interesting to see this question this morning. I was diagnosed with APS a year ago. I was just tested again, and there were no detectable antibodies although I still have symptoms, and my diagnoses was changed to transverse myelitis. I did have very brief paralysis in 2005 at the onset of this disease and the TM diagnoses does fit me,

Clearly there is some association between APS and TM.

I was never put on warfarin and labwork for clotting is normal, so that part is not a worry. It is all pretty confusing though.

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Hi Hayley...

There is a strong association with TM and APS. I hope all works out well for you as the diagnoses changing is confusing.

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sorry I spelled your name wrong..haley :)

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I discussed this with my old professor when I saw him at the JRII in Oxford, and way before we knew what I had was later to become known as Hughes/APS. I'd been on warfarin for many years and I remember him saying that, antibodies present or not, he would put himself on valium for life before taking me off warfarin. I've never felt inclined to argue with him on this matter.

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So glad you have excellent care and a physician who cares Tim.

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Oh Hayley I am in the same position as you. I had the antibodies then they dropped I also have transverse myelitis since last year and am still numb from my waist down. I've been told I don't have aps as my levels have dropped. They were 22, 19 then 14 of the igm antibody only. I have a lot of other problems, visual snow, tinnitus, hyperacusis, petechaie but no answer for it. I take a, mini aspirin a day that has stopped my migraines at least. I go to see the haematologist again on Thursday who is useless anyone got an suggestions for info I could take. I am also suspecting Lyme disease at the moment.

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Hi, there

Well my beta2 glycoproteins dropped to normal after 3positive tests however, I am life long warfarin - my INR is set between 3 - 4 although my blood sometimes throws a wobbly. As I understand from people answering my question similar to yours, is your antibodies can fluctuate dependant on if you are having a flare up. I would say though I am not sure what constitutes a flare up.

:)

Lesley

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Hi Lesley...

For me I go into the bad phases where the different symptoms hit me like a ton of bricks...they flare up like a dragon's ugly head! Then after some period of time they subside...although this time it hasnt yet subsided after some time. In between seems I have the "normal" phase...just the same issues we all live with when we deal with APS everyday.

I can say though that I have had bad flare ups of harsher symptoms and had a negative test for antibodies...and at other times when it is just the "run of the mill" things with APS my antibodies have been positive. So I am not too sure about this one either Lesley.

Take care and thanks for the reply!!!!

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Wow I was 25 and I had a blood clot in my head and a baby in my belly and once the clot dissolved the doctor took me off of coumadin and told me I dont need any follow ups so now 5 years later I am having a very difficult time functioning! I am getting back on path but due to mini strokes that I have suffered its a long road ahead! To think as a mom with 3 kids 4, 1 and a newborn this dr could have costed me my life! Fight for yourself print statements and research from here and educate your dr. You only have one life and its yours no one elses so dont take no for an answer. I hope this helps unfortunately I learned this the hard way!

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DawnS... my goodness. I feel for you!

Hmmmm I would be so frustrated as well if I were in your shoes. Well...I kind of was at one point too but that was many years ago before I was diagnosed with APS. I was pregnant and had a DVT in my leg...was hospitalized and treated. He never said I needed anything else...or to worry about this or that...or watch for anything.

You are TOTALLY right Dawn...sometimes we only have ourselves to stand up for us, esp when I doc doesnt understand or writes us off.

I will be praying for you. I remember how hard it was with two little ones and dealing with all this. They are now 19 and 20!

Had I known then what I know now....I wish someone would have told me to seek counseling or some type of therapy to help me get through some of these issues. It was a struggle at times esp with the little ones.

Make sure that you take time for you to relax too. You need that and deserve it.

:) Take care DawnS!!

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Thanks Pumpkin Cake I am trying to take it easy and it is very frustrating. I wouldnt wish this on anyone but its nice to know I am not alone!

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Dawn

You are definitely not alone!!

Dawn, it is just a mystery! like INR don't you think?

Friday my INR was stable at 3.9 on 8mg nothing changed, had it randomly checked at hospital due to another problem, and it was 2.4, TOO low, but they wouldnn't give me heparin as I am bleeding.....

Such a finniky disease which seems to have no rhyme or reason

Smiles to all

Lesley

:)

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