Hello everyone. I'm new here.

[putterbunneh]

So glad I found this site. I have APS and have been patient at the London Louise Coote Lupus clinic since 2001ish. Had my annual review there today and am feeling so fortunate not to have been discharged. It is really awful that they are having to cull their patient list.

[MaryF Administrator]

Hi there and welcome, I am pleased you have not been discharged and wish this was the case across the board, but at least a little bit of good news. Please let us know if that particular situation changes. Mary F x

[putterbunneh]

Thank-you MaryF. Having read the posts here about the discharges, I was dreading that might happen to me too. I consoled myself though by planning to go privately to the London Bridge to see Dr Khamashta again. I can't really afford to do that but at least I'm already diagnosed and happy with my medication. Jenny x

[Manofmendip]

Hi Jenny and welcome.

Glad you are diagnosed and happy with meds at the moment.

Best wishes.

Dave

[putterbunneh in reply to Manofmendip]

Thank you, Dave

It was hard work getting there - with the diagnosis and the treatment - but am so glad I was able to do it whilst I had the strength and resources. It is sad that so many have to work so hard at it, at a time when they are feeling very ill. I do wish APS were better known, especially amongst medics. I really can't understand why it isn't.

Jen

[jessielou]

Hi Jenny

Welcome and glad you found us. Good to hear of your positive appointment with St T's, glad treatment all going well with you too!

Take care gentle hugs love Sheena xxxxx

[putterbunneh in reply to jessielou]

Thank-you, Sheena

It's great to be here! The posts are interesting and informative.

Love Jen xxxx

[putterbunneh]

Hi,

Glad to hear my news cheered you up. Reducing the capacity of the clinic does seem like a really false economy - their help has enabled me (and many others no doubt) to avoid a 'disabled' future' that would have cost NHS much more and stopped me from working. I wonder what would be the best way to protest this move. xxx

[Sophia]

Hi there!

I am so happy for you! It is great to be able to stay with the Lupus Unit. Finally some good news! Btw, I do agree with all of you on sticking with private consultations at the London Bridge Hospital in case of discharge. Out of curiosity - if you don't mind my asking of course - would you say you are stable or do you frequently have flares? Maybe there is a pattern to how they decide which patients to discharge and which not. To me, that stable- inactive - very active business is very vague and the criteria are not clearly defined. Would be good if the rest of us knew at least what to expect based on our disease status. So sorry for my babbling on.

Thanks a lot for letting us know and hang in there!

xxx

[putterbunneh in reply to Sophia]

Hi Sophie, I'm having a flare up now - so I'm in the type of state where I can easily misread a post! Apologies in advance for any gaffs. I only go to annual reviews and don't ask for referrals (my GP clinic disapproves of my being a patient there - because it's tertiary care - they have no budget for it. ) so I rarely mention flares. Why wasn't I discharged? I have CNS APS - maybe that is considered high-risk - or it could merely be because I live in London. I consider myself quite stable nowadays. I have already had invaluable help from St Thoms and it breaks my heart that others may not get access to that sort of help in the future.

[putterbunneh in reply to Sophia]

Sorry about the delay - I just saw your question. I do consider myself stable. I have flares often after infection. But I never mention them to Drs as I know they'll pass and doubt there is any treatment. If I felt a flare it was life threatening or the pain was excruciating I'd get myself to A&E, even though it would be doubtful anyone would know about APS! xx

[jetjetjet]

Hi--- Jen and welcome to our site-- lots of great people here for all- i went to a appointment at gastroenterology department in Lebanon -- New Dc. was niece -she was not very familiar with APS so i guess i have to educate another Dc.. - the good thing is she is a good listener- like most always with new Dc's she doesn;t quite know what to make of me yet ???? but it will come together with time. but when you made mention of Dc's not knowing more about our disorders you are right- no matter what side of the ocean we are on jet

[putterbunneh in reply to jetjetjet]

Hi Jetjetjet, Well done you! I've never tried to educate doctors about APS. I feel bad about that. If we don't make the effort to spread the word ourselves, who else will? I have been thinking of getting a file of information ready to take with me to the non-specialist appointments. Thank you for reminding me. Jen

[putterbunneh]

Hi, I too am bracing myself for cancellation of next appt in Jan 2013. Will be trying to make sure I have money for London Bridge appt always available. I'm not sure (as I happened before I was diagnosed) but I think I had Catastrophic APS 17 years ago and I never want to go through anything like that again without access to Drs who know what it is. I was surprised I survived it as I got no medical help or understanding at all at that time.

[putterbunneh in reply to putterbunneh]

Whoops - meant 2014 appt, not 2013

[jetjetjet]

Jenn -- good idea-- i have 23 Dc's i deal with in 3 differnt hospitals , alot are specialists in one field or another -- but that in no way means that they are even closely educated with our problems --- speak up be heard and let them know that you know whats going on . i my self have walked out of appointments and gone to find another doc. that will listen.you have to take control of your care -- and you have to do rhis -ask questioms - fully understsnd just what going on - it's your right to know-------eve of the tiger !!!!!!! :-)------------------ jet

[Sophia]

Hi putterbunneh,

Thank you so much for your answer. I hope you feel better soon. I think that having APS might be a factor in not discharging you possibly because most GPs don't really know about it and the lupus unit might not want to risk it. On the other hand, this might be wishful thinking on my behalf. We could start a poll to see what is happening but then again I suppose we'll soon find out anyway. I have an appointment in May but I had quite a bad APS/lupus flare up in September which lasted 2 months and saw my consultant on an emergency appointment. I do get flares in between but don't bother telling the unit about them because they will pass. So, they might not be aware of us all having flares quite often just because we don't bother them every single time unless it is really long-lasting and severe. Maybe just letting them know would be best? I also live in London and apart from my definite APS diagnosis my doc added a second one "undifferentiated connective tissue disease" after the September incident just because I don't have positive blood results for a diagnosis for lupus although Prof. Hughes says he thinks I have lupus and emphasised that he hates the criteria and thinking "inside the box" to which I am sure everybody in here agrees 100%. Fingers crossed something changes and they decide to not discharge anybody from now on and accept those who they discharged back into their care. Bless you all!

Sxx

[walk1]

hi i am also new to this site only joined today,i also go to st thomas lupus unit,every 9 months,it gives me that peace of mind that all is well.So proud that we have the nhs to turn to.