First blog, recently diagnosed with sle, Hughes and pots syndrome this year.

[Scoofiecoo]

Hi there, just thought I'd introduce myself this seems like a good forum to be part of! I've had an awful start to the year and on 15th Feb I was diagnosed with SLE with Antiphospholipid Syndrome after developing a DVT in each calf.... With no risk factors since I'm only 19!

The diagnosis came about as for around 3/4 months I had been getting pain in my hip joint which started to spread to my other joints . This got to the point I could barely move and was put in hospital when I had the dvts. So after nearly 2 weeks of them thinking I had infections, hep c you name it I was started on 60mg pred steroids for a week for suspected inflammatory arthritis only and sent on my way. Dropping by 10mg every week until I would take 5mg weeks 7 to 12. This did not happen!

As soon as I dropped to 40mg all the aches came back and in new places too. Heart was always racing, I was clammy, fatigued and you name it I could go on!

So after managing to see my rheumatologist he admitted me again to hospital and diagnosed SLE. Even though some of my blood work (don't think I'm Ana positive is it? So new to this!) didn't match. Was there for 2 weeks as my Inr plummeted down the way and after an MRI of my head the consultants were in 2 minds over whether there was actually a small blood clot in one of the small veins in my head. Was told not to worry and it probably wasn't there..... Easier said than done.

Now I'm on 60mg pred, 400mg hydroxychloroquine, 20mg methotrexate weekly as my main medication. Also on a small blood pressure tablet for my kidneys, omeprazole for the stomach and obviously pain killers when required. Oh and warfarin! So much to take in!

Anyway I hit another snag when 2 days after I was discharged after being in nearly 2 weeks again I had my first seizure. So back in the hospital (a different one since I was taken by ambulance) where they said it could have been a number of things. Head ct was clear however so that's good. I have my suspicions it was sleep deprivation as I was up early and the steroids had given me a particularly bad sleep but who knows. Waiting on an eeg to find out more.

So I was booted back up to 60mg pred and now have to stay on that for 4 more weeks as a precaution. I literally must have every single side effect, I hate the stuff but know it's a for the best in the long run hopefully!

Believe it or not that is my story in the very short form. It's very complicated so would love to hear comments or questions. I also have something called postural orthostatic tachycardia syndrome (pots) so my heart often hammers up to 170bpm just by taking a shower. I am waiting to see see a cardiologist and a neurologist to discuss medication to combat this best we can.

I'm lucky that I am a positive person, however this is wearing thin now because my rheumatologist said we may have to go down the line of infusions if this doesn't work I have the year out of uni too so can barely do anything except try get my health in check. Miss my social life already!

Speak soon, Scoofie xxxx

[daisyd]

I have Epilepsy I think caused by Hughes syndrome. I am on antii epilepsy drugs for it,

I have to have my Inr in the range of 3.5 ish. So I am usually on about 9 to 10mgs Warfarin

Gosh you are really going through it at the moment, I really feel for you.

Have you looked at the Hughes web site on here,

I hope you soon get your appointments sorted out for you, good luck xx

[letslaugh63]

Hi scoofie well your going through the wars sorry your having such a hard time I can't really help you just wanted to say hi really.I'm not diagnosed and symptoms no where near yours but this is a wonderful site with lots of wonderful people so your in the right place x

[poodlegal]

hi scoofie,is your POTS related to lupus? i have a very fast heart rate at times but its always put down to my nerves as ive suffered from anxiety for the past 13 years,all meds dnt help either but im like you any activity can have my heart racing to 160+ xx

[Scoofiecoo]

Daisy: yeh I'm hoping I don't have epilepsy to add to my extensive list only had one seizure and still waiting on an eeg to see if anything is going on. My inr is 2.5-3.0 but was 2.0-2.5 when they thought it was just a random dvt. But no not been on the Hughes page yet I'll be sure to do that thanks I get the feeling I'll be chasing up the outpatient appointments though!

And thanks let's laugh, I'm already glad I've joined up it bridge's that gap where people actually understand what you're going through!

Poodlegal: well I think so as it's a secondary diagnosis to my lupus it said in my discharge letter. But still to speak with the cardiologist about it - heard of a tilt table test you can get. Think the only reason mine was diagnosed is because I was on the telemetry monitor at hospital and even standing up it went berserk because it clocked me at 150bpm! The nurse couldn't quite believe her eyes when she saw the number. But you should suggest it to your gp as I have slight anxiety too but this has definitely only been since I started the pred. And I was tachy before starting that as one if the consultants tried to say it was the pred but there was no way I was having that! Do you have other symptoms of it? I get clammy and find it hard to regulate my temperature, and my arms, legs and face get flushed particularly having a shower as the blood volume increases apparently. But this is all stuff I've just researched about I haven't been given any info about it apart to increase my fluid intake - but it was amazing finding a diagnosis that I could relate to.

[poodlegal]

thanks for your reply,i have facial flushing at times,i know my heart beats really fast when im at hospital or out shopping and that is my nerves but sometimes it goes crazy like when walking round the house and in any heat ,im so aware of it now and worry like mad over the affect on my heart from the fast beating also suffer from eptopic beats which i hate,feel my heart skipping beats,i was sent for ecg ,24 hr holter-came out 70 to 170 and echo and all was normal apart from very fast heartrate,i know my obbsession with it doesnt help,i always tell my doctors of my concerns but they always say anxiety doesnt help heartrate,they never made a connection to lupus but looking on the net alot of people with lupus also have my problem of sinus tachy,when i was on steriods 40mg it was awful!! well you are taking it all in your stride,its alot for anyone to accept let alone when your 19,i hope you get the right treatment to help you,let me know what the heart doc says,take care xx

[rlupus]

Hi just thought i would tell you i was 19 when i had DVT in my leg was given heparin to thin my blood , however it took over 7years for me to be diagnosed, Now after with living with lupus for 24 years i am now on 50MG of warfarin as i have had 18 clots in legs and 4 in lungs i have been told by the medics i will be on this for the rest of my life as i keep getting clots and my blood goes from 1.1 anything to 16.9 for no reason nobody understands apart from being told its the lupus, i also have chronic obstructive airways, i am on a lot of medication also but try to do the best i can with every day life but sometimes its very hard,

But take care xx

[Scoofiecoo]

Yeh my face flushes like mad and I'm learning to pace myself now because I clam up so bad and have to make sure I drink loads. However too much and the blood pools in my legs and I half suspect this is how I got the dvt in each leg. I'm a pretty positive person thankfully but now having major moods swings from the 60mg of prednisone! I also have to admit I've done a year in uni doing midwifery so I'm constantly researching and trying to better my treatment and always asking where my bloods stand, it was so weird being on the other side in hospital though. Hearing them discussing your notes and whatnot! I do really hope you get somewhere though and just suggest to them the idea of pots and I'll keep you updated for sure thanks

R lupus that's awful I didn't even know you could be given that much warfarin! I asked my registrar outright so I take it I'll be on this the rest of my life? And he said yeh probably. I had 2 periods of heparin but luckily it eventually responded and I just need it checked once a week. I can't quite believe how unstable your inr is though, is there no other secondary condition that makes it do that I take it? I hope things improve in any capacity I'm learning to take one day at a time now but hearing that makes me remember how hard some people have fought to get a diagnosis in the first place. And I often say that to family and friends who say how awful they feel for me - I just say well at least it's diagnosed and it's getting treated whereas some people do continue to struggle.

All the best I hope to keep hearing from yous xxxx

[rlupus]

Morning , The answer to your question about is there a secondary condition all i ever get told its the LUPUS! I have been to 3 different hospitals now even ST Thomas in london they all say the same i just have to deal and manage it the best i can there is no rhyme or reason why its so unstable i am very lucky i have a fantastic GP who does my bloods twice a week and this is for life i have had to have a potacath in my chest so they can get bloods as my vaines are very bad and just collapse all the time. When i am admitted to hospital even some of the new docs are amazed out how much warfarin i take its quiet scary but without it i am sure i would be dead by now, However i am a very complex case as i have so many illnesses, i have chronic obstrutive airways , migraines, lupus, diabetes caused from medication,and high blood pressure , i think thats enough for now lol, Anyway i am now waiting on DWP as they are trying to get me back to work its a joke i am on Nebulisers at 4 times a day and 3 through the night with oxygen not sure who would even consider me as i am a liability and who is going to allow me to keep stoping to use the machine, Anyway i have had my moan take care we have to all keep fighting this incurable illness xx

[Jayne54]

Hi I have Hughes syndrome I've had it for 19 years now and I've got an endless list of health problems but the best advice I can give to you is never give up and laughter is by far the best medicine good luck and lots of hugs xxx

[Shann07]

Hi i dint know much about Hughes syndrome but ive had a rough ride over the years due to APS before i was eventually diagnosed with sle. I also attend heart specialist and im awaiting results of cardio.excerise stress test, only heart symptoms i have are breathlessness,palpatations for no reason like heart flying along and chest pain? Good luck welcome to the world of lupus! X

[Scoofiecoo]

Gosh rlupus they're trying to get you to work? What on earth, such a joke. It's good to vent though that's why I like this forum already because it's so true that nobody understands what your going through unless you have it in some capacity - though I certainly couldn't imagine how tough you have it with other serious problems such as your lungs keep strong.

Jayne: hi there well that's me known for exactly a month to this date that I now have an incurable illness and I agree with the laughter! If not I'll cry, which I still do on the bad days but I'm 100% sure everyone else has too though, positive thinking and all that!

Hi Soph is your aps not the same as Hughes Syndrome? I'm I wrong in thinking they are the same? Yeh I have similar symptoms but haven't had all the tests you have had done - I think it's because I kept pitching up at the acute receiving units (myself and one ambulance trip!) haha.... And thanks loopy lupus indeed! Xxxx

[lemonface]

Hi Scoofie Welcome to our wolf pack. Its a fab thing this techy stuff. When I was first dxd 21 yrs ago there was mothing. No one even told me about Lupus uk. I was all alone. So take heart my friend we are all here to help each other.Although no 2 of us are the same we all understand better than others without this disease what it is like to live with this wee beastie. Hang in there x