LUPUS UK
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hi to all just been told i have lupus antigen sle

im lost in this illness at the moment my mind is all over the place any help or advise out there ...tracey

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Hi and welcome to the group. I think the best advice I can give you is check out the lupus uk website, don't go to google crazy that can be scary, ask as many questions as you want on here and at your doctor and rest and relaxation are probably the best defence you will have with this disease. Lots of gentle hugs and i am sure you will get through this difficult stage.

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Just got back from the hospital and guess what,they still want me to take the Hydroxychloroquine.They insist it is the best route to start.No advice regarding the depression except,'The illness',does'nt help.Can't rest or relax at the moment,am trying to calm down.thanks for your reply though.

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hi thankyou for that iv not realy looked to deep in the wonderfull illness; i try to be as carm as possiable relax to my music and to read but i get days were i cannot be botherd as i lack interset thought i was going mad as i have to also deal with the blood clotting problem to life i s a bitch hay .i will try to stay possitive as much as i can best wishes xx

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Not a good time for me to help with advice at the moment,just got back from the hospital but,stay positive and take good care of yourself.

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Hi tracey,

advice would be to just keep talking. Helps a lot to know there's support and people going through the same thing as you when you're not feeling yourself.. and lots of cup of tea breaks :)

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thankyou for your kind words but coffee is the one for me..do you also suffer with lost of the need for food or is that a side affect to all the tablets thay give you i feel like i rattle but nothing seems to help even tramodol for the pain but thay dont realy work have you got any answeres to help with the pain ? west wishes to you xx

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Haha, coffee's good too.

I'm not sure if it could be a side effect, I think it affects me depending on what kind of mood I'm in.

What kind of medication are you taking? The only thing that used to sort my pain were depot steroid injections but fortunately I only get occasional joint pains now instead of all over.. but am on 12.5g prednisolone daily. Totally with you on the Tramadol, it doesn't work but I still take it just to try and forget it's there! x

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when i was diagnoised it really did my head in relef i finally new i wasnt making it all up but devostated. give your self time. its a lot to deal with and lupus can be complicated. all the best

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hi there thankyou for the help..yes lupus is a devil and also i have the form which you have the blood clotting problem to so yes my head has been fryed to put it polightly yes i thought i was going mad aswell i was convinced i was a hypercondreact as i was so poorly for a long time its when thay say sorry there is nothing we can do still carnt get my head around that ..think i might be best to go mad as then i might feel normal well take care tracey x

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Firstly I think you have to not panic, though it's easier said than done. I was diagnosed in Feb this year and my Rheumey gave me a lot of leaflets and when I'd calmed down they really helped but it was so mind blowing to start with. In the summer we found that my dad's cousin and her daughter also have S.L.E. now I know why I finally felt ill all my life, I just thought everybody felt that way! I should've gone to the drs and complained more but it wasn't until i had a massive flare and was really sick that they knew something was wrong with my immune system, it took 34 years to find. The more consultants they sent me to the more scary it got and now looking back I know I was born like this and my body's been doing this to me for a long time, it makes sense now. Lupus UK do some good books and great advice, Arthritis people do good leaflets and I also got a couple of books from Amazon, they really helped to put my mind at rest and are there if I need to check something or look up what something means and they don't say it in scary medical jargon! For me, I'm happier knowing what I'm dealing with and fighting against. My GP says I'm the rarest thing he's ever seen in his whole career, cheeky, but at least I'm interesting to them. Another GP at my surgery told me helping people like us was what he became a Dr for so they are there for you. I would talk to your GP too, mine will explain anything I don't understand and they help so much, there's definately help and support out there & you made it here too :)

At the mo I'm taking Hydroxycloroquine, Prednisolone, Azathiaprine and they give me Vitamin D on prescription and B12 jabs. I take Tramadol for the pain and it does work for me & knocks me out in about 15mins so I sleep well. One of the best things is a hot water bottle, for the pain and to keep you warm and your blood flowing, I couldn't live without one - or two! Also, it's just cosy and makes me feel good to snuggle up when I'm tired.

How are your family and friends? It's scary for your family too knowing what you're going through. My work colleagues can be a pain but I know they don't get it!!! My family are brilliant and keep me going when I get down days and they take care of me in ways I can never repay. Talk to them cuz most of all they love you to bits and will want to help.

Good luck & take care x

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hi there.yes i have also looked back and have always like you sufferd all my life,birth mum never had this linness or her family so god know's were i got it from ...my mother(adoptive)when i was a teenager why some days i could not move and i have always been sun sensertive, so lookind back its all fits in .but none of my family have this illness note even my brother's(birth) my family arn't my blood relatives as i was adopped when i was 3 years of age i didnt have much hair but the doctors thought it was stress due to whot i had been through but it all seam's to tye in.but when i had my childern i had no sign's of it but when i was 39 it gave me a good kicking, and i had my first bloodclot i have has 16 all intoll i even clotted on warfrin so i have to ingect myselve daily untill a new drug comes out this feb...i also take the drug's you also take but i cannot have the vitimin d6 as i also have rear blood so everwhay i try to go i come up against a brick wall and with anticolage i can only take medicens whot dont interfear with them as also the blood clot's have a massive problem with bein medecated and another threat to my life..so as you might guess my head has been fryed...my family i try to be blarsay as my daugeter had a blood clot in preganacy so it sounds like she has this condition aswell she is goin to see her gp and talk to him as she look's scared when she see me when im going through hell i dont wont them to worry my husbond is great but even he gets confused with our friend but he does try to undestand bless him i also carnt cope with the massive mood changes some day's i dont no who i am anymore.....but i'm sure i will learn to cope with it all ,my gp is great but like you i'm the complcated lady and he tryes to understand but he dosen't help my when all he can do is say sorry there is alway's hope..but he does try as you know this friend is a very complecated illness.. i also suffer from alot of infection's do you to i carn't go out with out getting some kind of virus sometimes i feel like a prisoner in my own world somedays i just ake all over i'm begging to loose the feeling in my right arm.thay say thet lupus is attacking my nerves system more good new ( trying to see the funny side to this) well thankyou for your kind words take care ..and i will ask sants for loads of hot water bottles xx

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