Sticky Blood-Hughes Syndrome Support
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how well do your drugs work?

with the exception of warfarin which i know we all need to stay alive! and to help relieve some symptoms of APs, how well do you feel the other drugs work? I took all sorts at first ,had a prednisilone drip then a course of cyclophosthamide (sorry think thats how you spell it) followed by steroids and azothyoprine (sorry for the awful spelling) I don't ever recall feeling much better for taking them . The only drug that i can say that has a definate effect on me is the warfarin, which i have to take because i clot without it. I can't say that i have ever had a day without pain or felt normal (forgotten what normal is ) for as long as i can remember even when my INR is high although admittedly thats not often! I stuck with the other drugs for about 2 yrs but never really felt any better so just stopped taking them, and can't really say i'm any worse, then i felt really disillusioned and quite helpless thinking well if iv'e got an incurable disease and the treatment doesn't work for me whats the point of having a specialist when there is not much else they can offer! so i haven't seen a specialist for about 5yrs . am i mad what would you do? I just feel that i am trying to ask him to 'fix' me and i'm expecting the impossible because i can't be fixed, so i just plod on , don't ask for help then don't feel disappointed when i don't get any! Thankyou all so much for reading my post mully xxxxx

4 Replies

Hi mully

I recently started on slow release tramadol and pregabalin, then more recently plaquenil and feel like I'm getting a little better.

Don't give in, go see specialist and show them your post. It says it all hon.

I hope they can fibd something that helps.

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)


Hi Mully

Like you Warfarin keeps me going.

I am on Plaquenil and I do wonder what good it does, I have been taking it 3 years now. On the other hand if I stopped I dare say I would feel even worse without it LOL.

Gabapentin does halp to take the edge off my pain.

Warafin Horray for Warfarin, it got my life back.




Good question. Definitely the warfarin. My problem is that I am so sensitive to most medications. I was prescribed plaquenil 10 yrs ago and came out in a horrendous rash so was then put on Mepacrine, but whether it helps or not I don't know. I am also on amitriptyline but can't take more than 5mg or am knocked out. Dread needing strong pain relief as anything that contains codeine or opiates makes me violently sick. Waiting to see if the rheumatolgist I am seeing on Friday comes up with any other suggestions.



Am on co-codamol and ametryptelin (sp). Did have patches but ran out of skin!! had a good result regarding pain relief but the problem could not be solved regarding my allergic reaction to the drug and the adhesive. I also have osteo arthritis and it is difficult at times to differentiate which pain is which. Warfarin has been the wonder drug and cured the continual headaches, not just headaches but terrific bangs in the head. I had a stroke in 2006 and was diagnosed with APS after that. Keep at the medics and good luck. xx


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