i am currently being tested for lupus.

i am currently being tested for lupus as doc has incling i have autoimmune vasculitis..im waiting for lupus rwsults..also being referred to a specialist..i have periods of very red sore angry itchy rashes also joint pain..im cureently taking 8 steroids every morning..anti inflammitories..anti histamines and creams..does anyone else have same symptoms..would like to learn more..thanks

[nanny4]

Hi there,my daughter is 26,she has sle and. Is now awaiting a full body c.t. scan to see if she has vasculitis,hopefully her c.t scan will be next week,she had been. told that due to her numerous symptoms she may have a severe vasculitis if not,it will be on to yet another consultant for more tests for other severe autoimmune disease,I hope you get some resolution,knowing what we now know,autoimmune diseases can take years to be diagnosed,my daughter was unwell from a baby,severe excema,asthma allergies,bowel problems,m.e to name but a few,every specialist used to say,BUT SHE LOOKS OK TODAY,talk about feel like a liar,good thing she was a child and didnt understand they were trying to say there was nothing wrong.IDIOTS! Good luck with getting a quick diagnosis,I truly feel for everyonee being on the outside watching my daughter suffer,makes me realise how lucky I am.Sandy

[Hidden]

poor you and your daughter hun..ive only been experiencing oroblems for just over a week but they have put me in for urgent to see a rhumatologist so hope that happens soon..i have read alot about autoimmune disease and hopefully i will be told sooner rather than later so i can be treated properly..good luck to you and your daughter xxxx

[nanny4 in reply to Hidden]

Hi ,I do apologise,I didn't really answer your question,my daughters has really sore rash from head to toe,she gets a rash on her face,which just looks like pimples ,it never looks like anything very much,but her body bless her is a dif story,she has a rash all over her body,which has left behind severe scaring,some of the sores are as big as a fifty pence piece,she gets painful cuts on the ends of her fingers,since she has started on all the. lupus meds she has had some realignment,but every time she has had a steroid infusion and tapperef her steroids down,she gets the painful rash back,which is what has happened now.her list of symptoms is endless and scan results of spine and brain showed severe swelling,since she has been taking steroids,this has gone down,she has scarring of her heart valves,also scarring on her kidney,she had tunnel vision and never even realised as she had probably had it soooooooo long.she gets bad headaches,acid reflux,asthma,allergies,anaphalaxis from certain foods,carpel tunnel,losses the feeling in her feet and arms and legs,the list goes on,bless her,she was only dxd 6 months ago,now they are saying they don't know if it is lupus,it could be something different as it is still severe even on all themeds she is taking,she is still flaring.It was suspected when she was about 20 that she may have multiple sclerosis,one minute she is told that it isn't,so she could breath a sigh of relief,now she is told that it could still be ms and or lupus.

She has twin 3 year olds and works fulltime in a stressful job,I don't know how she copes bless her,she has to as she is the main bread winner.

Hope you get sorted soon,take care Sandy.

[Hidden]

bless her..i also have the very same rash its itchy red angry and very sore..it comes up as and when it feels like it from anywhere from the soles if my feet to my face..im on steroids which seem to be helping but its giving me terrible pain in my back and chest..i really hope your daughter gets sorted as it sounds like shes pretty bad but big hats off to her for coping as she does..i also have 3 kids but i have been signed off work xx

[nanny4]

Hopefully you will get answers soon,i know the steroids can cause a lot of sidep effects,my daughter gets very bad headache,weight gain etc on them,maybe your pain is made worse by them.when my daughter had her full body c.t scan,she was told if they find what looks like vasculitis then she will have to have biopsies to determine which type it is,I think there is at least 20 different types,have you had a look on the health unlocked vasculitis form,it is a good site also.Sandy

[Paul_Howard Partner LUPUS UK]

Hi.

Please let me know if you'd like one of our free information packs so that you can learn a bit more about lupus. Just email [e-mail] or send me a private message with your name and address.

[kathybryant]

Get tested for lyme disease. Sounds very familiar to my daughter's condition. Now I'm being tested for lupus. Use igenex, western blot IgG, IgM. Your dr. Draws the blood and requests the test. You request the kit first from igenex. Also I recommend reading lymedisease.org. very helpful to us. Wish you well.