What medication options are there for aggressive APS ?

[Bonnie39]

After eight years of silence from medics post stroke, and MRI for an apparent lupus attack showed extent of my stroke and number of TIAs was urgently placed on a lifetime of warfarin with a heparin bridge while my INR was increased, last November. At the start of January I had my long awaited first appointment at St Ts for my lupus. Dr said warfarin is no longer the recommended treatment for APS? He didn't tell me what is now recommended for patients like me, but didn't explain what is. Any thoughts? I'm wondering if he's thinking plaquinel to treat both conditions as my APS is secondary to SLE? When thrombotologist put me on warfarin it was explained to me that due to extent of damage and history of migraine and miscarriage there wasn't any choice?

[MaryF Administrator]

Hi there, this sounds like you have been subjected to two conflicting medical opinions, it does seem very strange to me that you would be given no anticoagulation, have you passed a test for APS, or are you Seronegative, as this sometimes puts patients in a dangerous grey area. You may need to fight to go back to your original team, to get your anti coagulation sorted - perhaps your GP could refer you locally, here is the list: hughes-syndrome.org/self-he...

If not there is always a self refer to London Bridge option. Could you by private message please tell me who guided this opinion at St Thomas; please. MaryF x

[Bonnie39 in reply to MaryF]

My stroke was not really investigated and GP was increasing migraine treatments for years before and after. MRI for TMJ pain showed damage to brain and I had a miscarriage and lost a twin to one of my children. Following MRI had many blood tests which were repeated 12 weeks later. Both sets showed APS and lupus.

I guess I'm mostly concerned because I don't want to be on a drug with as many issues as warfarin for life if there is a better option, especially as the APS seems to be secondary to SLE.

[MaryF Administrator in reply to Bonnie39]

Hi there, Warfarin is not the only choice of treatment, but it is clear you need a sensible and up to date consultant managing your care, please try to either be referred back there, or locally with somebody off the list, your condition needs more supervision, clearly. MaryF x

[Bonnie39]

Thanks Mary. There is unfortunately no chance of my gp doing any referrals fpr me as he seems to think none of this is necessary! I have a return visit with the throbotologist in a few weeks but will call her secretary Monday but want to have more knowledge of options before I query her medication.

I

[Lure2 in reply to Bonnie39]

Poor you! You are really struggling between two rare and difficult illnesses and a lot of different doctors. You sound very wise and you have got two diagnoses and I do hope it will have a solution regarding your medications. I think of the Professor Hughes and wonder what he would say.....?

I agreee of course with Mary.

Good luck from Kerstin in Stockholm

[Bonnie39 in reply to Lure2]

Thanks Kerstin. I have another appointment with the same Dr at St T's and will ask him what the choices are. Hopefully he will then have all the results from the various tests he ordered last time. It is annoying that I still have more than a month to wait, though will call regularly for a cancellation. I wish I could have had the referral straight to St Ts but GP didnt want the complication of sorting funding to get me there and was happy because local consultant neurologist made internal hospital referral to the haemotological department which meant the combination of illnesses cannot be taken care of in one place as a haem will not really understand SLE. I managed to get a loocum in the practice to finally get me to St Ts, but when my regular GP discovered this he called me in for a meeting and lectured me because it is "unethical to get treatment from two consultants". Er, it is unethical to leave your patients with chronic illness without treatment. IMO he was negligent leaving me at 31 with an uninvestigated, unmedicated stroke and many TIAs.

[Lure2 in reply to Bonnie39]

I am sorry you have to fight but I can assure you that you are not alone in this fight.

Hope you stay strong, be kind to yourself and believe in yourself and perhaps wait a little while for a good result to follow.

Wishing you the best from Kerstin in Stockholm