Micro clots : prof hunt Tuesday up my... - Hughes Syndrome A...

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Micro clots

Tim_Thorpe profile image
20 Replies

prof hunt Tuesday up my aziophrine to 150 mg daily . She said my wafrin was not controlling my APS syndrome as it was to strong and that was what is causing the micro clots

She said I have been suffering small stroke type events and hopefully the aziophrine will surpress Aps syndrome to stop theses clots forming ??

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Tim_Thorpe profile image
Tim_Thorpe
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20 Replies
Wittycjt profile image
Wittycjt

Interesting, I hope this helps you. Keep us UTD( up to date) as you go along

Yllek profile image
Yllek

I've recently seen a Dr at London Bridge who said mines not under control either. Giving me one more month on hydroxychloroquine then putting me on this drug as well to try and control it.

I was diagnosed with a spinal stroke and an 'immune response' in my central nervous system.

It's scary as hell to me. Today my inr is 3.3 (vein) and I've got tingling lips, numb tongue, breathless and weird odd pain in my feet and pelvis which he said is nerve pain from spinal cord involvement. I hope to god that switching to azathioprine can help control these symptoms.

Have you found it helps at all? Have you ever been offered or discussed plasmapheresis?

Keep well x

Tim_Thorpe profile image
Tim_Thorpe in reply toYllek

My target inr is 4 plus have fragmine injections when below 3 had major stroke 2011 plus many Tia's found the hydrocloxaquine has been great in relief of pain hoping aziophrine will kick in soon. Prof hunt seemed concerned about preventing another stroke and further brain damage 👍

Yllek profile image
Yllek in reply toTim_Thorpe

My Dr works with Prof Hunt as well. He told me in his 'group' of Drs that some of them believe some patients are micro clotting and some of the Drs (including him) believe there's an immune response happening causing further symptoms. However regardless of who's right and what it is he said they all agree the way forward for these patients (us!) is azathioprine.

Let's hope they're right! Does it give you any side affects? X

Ps my target is 4 as well - very high but very needed as well. I've had spinal stroke x

Fusch profile image
Fusch in reply toYllek

I am another person who has been told they suspect an immune reaction in the brain, and taking aza to see if it helps. As well as the neurologist at guys, Paul Holmes, I am under Dr mummery at the London neurological hospital and I am having a lumbar puncture next month to see what they find.

Yllek profile image
Yllek in reply toFusch

Same neurologist 😊 x

Is the azathioprine helping so far?

jetjetjet profile image
jetjetjet

Do we have any literature on this ??I am wondering if this might be in part of my constant clotting . If any one has anything that has APS included i would love to see it - I will take it to my Dr's here . !!

Wittycjt profile image
Wittycjt in reply tojetjetjet

See wendywoo50 post about clots from three months ago, Hidden wrote a website in her response 2responses down. I would have copied it to here but don't know how. Maybe you can copy it for everyone.

jetjetjet profile image
jetjetjet in reply toWittycjt

Witt -you are funny -- I am lucky i can turn this on in the morning !!! A am what is considered Computer Illiterate. I am the poster child for the worst person in the world for computers-- where do you live WITT??

Wittycjt profile image
Wittycjt in reply tojetjetjet

NJ

jetjetjet profile image
jetjetjet in reply toWittycjt

O our Jersey Girl -- how old were you when you were Dia. and how long has it been ?

Wittycjt profile image
Wittycjt in reply tojetjetjet

Read my bio by clicking on my name tag. Too long to write again. The short of it: may have had for many years before actual diagnosis. I had a "TIA" with my son' s birth and they didn't know why... he is now 28! I am now 55.

Wittycjt profile image
Wittycjt in reply tojetjetjet

Did you read the info, stated below?

Tim_Thorpe profile image
Tim_Thorpe in reply toWittycjt

No couldn't find it 😌

Wittycjt profile image
Wittycjt in reply toTim_Thorpe

Keep moving down on this post guys

jetjetjet profile image
jetjetjet in reply toWittycjt

What info Witt- you were Dia. in 2015 . you are just a youngster !! you sound 28

HA. I'm in N.H.- if you guys are ever up this way please let me know . - my self don't travel much. never more than 1 hour from one or the other hospital's selection of 4 LOL

jetjetjet profile image
jetjetjet in reply toWittycjt

?? what info my friend ??

Wittycjt profile image
Wittycjt in reply tojetjetjet

The info below your/ this post

Wittycjt profile image
Wittycjt

Went back to recheck above, here it is hindawi.com/journals/Tswj/2...

Lind8 profile image
Lind8

Hi I also take azathoprine as they can't control my INR, they looked at giving me rhutexamab ( but sure if that's the correct spelling ) they give it to lupus patients, but said that not enough evidence to know how successful it is on APS yet & very expensive so I didn't meet criteria. I only take 50mg azathioprine as my neutrophils & WBC plummet when I try and increase them ( they are always on low side anyway). Really Hope increasing them

works for you, be interesting to see how you get on

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