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Hughes Syndrome APS Forum

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w8andhewill profile image
6 Replies

Hello all - yesterday I was newly diagnosed with APS ... had a small stroke one month ago and blood results from that hospital stay showed lupus anticoagulant and APS. Saw the hematologist for the first time yesterday and am bridging Warfarin and taking it orally too. I'm in that place of ...... really??? My Dad has a clotting disorder, which is why I know so much about Warfarin, etc., but mine is not the same as his.

Does this get easier? Will I settle into the "new normal"? It's really strange and frightening right now.

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w8andhewill
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6 Replies
w8andhewill profile image
w8andhewill

Thank you! I hadn't thought of it that way! I suppose I was very lucky to have an ER doc run the tests when I had a small stroke. I usually don't spend long feeling sorry for myself, so let's hope I get on with it quickly!!!

CanaryDiamond10 profile image
CanaryDiamond10

Hi APsnotFab: Not too long ago, but previous to the new site, you posted an article or maybe it was u-tube with regard to Prof. Hughes recommending brand-name Plaquenil as opposed to generic. Would you mind re-posting it? I have just begun a trial and requested Plaquenil brand but have been having a terrible time finding the article in archives. My memory is so bad I can't even find archives! Your help would be greatly appreciated.

Make it a great day.

Canary

Manofmendip profile image
Manofmendip

Hello and welcome.

I second everything that has been said above.

Best wishes.

Dave

CanaryDiamond10 profile image
CanaryDiamond10

Hi APsnot: Would it be a good idea to pose the question of: Do you take Plaquenil, then if so do you take name brand or generic? I am having a good deal of trouble with my left eye since surgery. Would you mind putting it up so it's within your guidelines? Incidentally, I did the APsnotFab: Plaquenil in the search and it brought me to some interesting conversation about the same topic from July 19 or so, but alas you said you would ask Prof Hughes about it when you went to patient's day because you looked but could not find the original. I was wondering now that I am on the trial. It is not as expensive as I thought but it is a bit more than generic. Well worth it if it works. If you ever come across the paper by Prof Hughes would you mind sending me the pathway? Thanks, Canary

CanaryDiamond10 profile image
CanaryDiamond10

That will be a wonderful opportunity for you. I can't wait to hear about your visit.

Warm wishes,

Canary

Suzypawz profile image
Suzypawz

Hi sorry to hear you have APS, I too was diagnosed quite quickly after having symptoms & possible small stroke.....so it feels even though no its not good news....it could have been worse? do you know what I mean?

It does take time to adjust to the news.....we've all been there & these sites are fantastic for support from people that will understand what your going through etc.

In answer to the plaquinil question....I was once given the generic version which was quinoric.....I felt it didn't work as well at all, even thought the doc' & pharmacist insisted they were the same!! they put me back onto plaquinil though at my request......

We are all different with the degree of what we go through too with APS, so where one could still get on well with working....others may not.

Keep strong & you know where we are xx

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