Sticky Blood-Hughes Syndrome Support
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hi,im chelle,been diagnosed with aps for six yrs,was originally on warfarin but couldnt get inr in range despite taking 27mg of warfarin,so im now injecting clexane..i have other health issues along side this such as hidradenitis surppurtiva(had this since a little girl) & my every day is a living nightmare with both flaring, ive tried to remain strong & never admitted to myself im poorly,refused pain relief & so on...until now

i have a drs appointment next week & im gona ask for pain relief,simple everyday tasks are takin me so much longer to do,walkin to the shop, cutting the grass takes me 3 hours & im in agony for days after..the hs causes massive abcesses under my arms & breasts so it hurts to end & move,ive been unable to use my left arm for 5 days as i have a huge one there..i feel like such a let down to my kids as i should beable to provide for them but i cant :'( im wondering if anyone has been successful with a claim for pip because of these crappy illnesses x

4 Replies


Sorry to hear that you are having a thoroughly bad time at the moment.

To answer your PIP question, I think the answer is 'yes'.

Can I offer the same advice as was offered recently to someone claiming, check out the Benefits and Work website for lots f valuable information, and think about seeking help from the CAB.

I have no connection now with either now, though when I worked as an advisor with the CAB, we used training from B&W.


thank you so much for your reply,i will look into it,hope your feeling ok today too


Hello and welcome, a lot of us on here have a mixture of diseases beyond The Hughes Syndrome/APS. You can become quite informed at the scope and breadth of all this just by reading all the posts that float in. Our charity website is also very informative and carries a list of recommended specialists and also keeps updated with all the relevant information:

Hope you feel better soon, regarding your other condition. MaryF


Hi, I wonder if you did have symptoms of APS as the doctors put you on warfarin?

I just feel that you should be certain that your other illness is not in any way connected with APS or ev other autoimmun illness. Sometimes MS and Fibro can be mixed up with APS.

That is why I think that perhaps you should see an APS-Specialist who knows APS and all the symptoms (there are so many organs involved in this illness) and who knows what to look for.

I also wonder if anticoagulation has helped you? I take 5 mg of warfarin which helps me so I do not understand why 27 mg did not help you. Were you stabel on warfarin?Does Clexane help with you APS-symptoms?

Best wishes from Kerstin in Stockholm


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