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 ??
Interesting, I hope this helps you. Keep us UTD( up to date) as you go along
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
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 👍
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
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.
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 . !!
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.
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??
NJ
O our Jersey Girl -- how old were you when you were Dia. and how long has it been ?
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.
Did you read the info, stated below?
No couldn't find it 😌
Keep moving down on this post guys
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
Went back to recheck above, here it is hindawi.com/journals/Tswj/2...
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
Severe Menstrual Clots
Does Nick Cannon have Hughe's Syndrome?
A oncologist doing the job of a hematologist?
