Does anyone else have the condition lupus?

Question

I was diagnosed with lupus last year after suffering with ITP low blood platelets which resulted in me having my spleen removed. has anyone else have this condition and has it affected their blood platelets?

Answer 1

You might find this leaflet useful

http://www.patient.co.uk/showdoc/23069056/

Answer 2

Yes i have lupus which was eventually diagnosed about 3 years ago as "lupus arthralgia with fibromyalgia", allthough i find that it is often easiest to call it just "lupus" or "SLE" when talking to medical people/others (such as social security for incapacity benefit purposes, for example) about your condition.

I found the first years were the worst for me in terms of actually getting a diagnosis & hence the correct treatment, and in then adjusting to the fact that I had a disease for which there is presently no cure,(there is stil hope that research will eventually find a cure). These days I manage to keep relatively stable with my health, through following some basic "rules to stop me getting really poorly/having a lupus flare up".

I do not have low platelets but you may find some useful information by searching the internet under thrombocytopenia, ITP, splenectomy or haematology (see later for some suggestions of web sites that i think may be of use to you)

My basic rules to keep healthy / advise i'd give to anyone with lupus include:-
Pace everything you do (don't overdo things on the days that you feel ok)
Accept your "disease" and try to be positive about becoming "at-ease with your dis-ease" - getting information & support can help you do this (see later for some guide web addresses for lupus info)
Try not to just sleep all the time (but accept that you probably do need more sleep than most peoples standard 8hours)
Try to do some gentle excersise at least a couple of times a week, just do as much as you can without making yourself feel any worse (swimming & yoga work for me)
Try to eat healthly, and do get the "5 fruit&veg a day" every single day (organic if possible)
Make sure that you get information, help, and support for your condition
There is some good information on ITP at the following web sites
www.itpsupport.org.uk
www.itppeople.com
www.bmj.com
www.netdoctor.co.uk
For general lupus support if you live in uk i would definately advise joining the charity Lupus UK, as they have loads of information and local uk groups where you can meet fellow lupus sufferers web address www.lupusuk.com.
Good luck with it all, hope you find this useful

Answer 3

Wow.....I have had TTP (Thrombocytopenia) to 4 1/2 years now. I have avoided having my spleen removed by having plasma transfusions done. My platelet count was below 25,000 which resulted in me having 4 strokes.

I have been researching Lupus now for about 2 weeks. I am getting migraines more often and having seizures more often. I have MEGA stress in my life. I also feel that I have arthritis in my upper torso. I can't make a fist and walking is almost impossible at times. You may research fibromalgia. I have also been diagnosed with that.

Answer 4

my brother has that horrible disease,.as far as i know there,s 3 different types. 1,lupuserythematosus_ u get a rash which starts as a red circular thickened area of skin, u get it on your face , behind the ears , and on the scalp.other symptoms are a red butterfly shaped rash on the cheeks, and bridge of the nose. also ,fatigue, fever , nausea, loss of appetite,joint pain and weight loss. symptoms go on and on,anaemia, neurological and psychiatric probs, kidney failure,pleurisy, arthritis, and pericarditis, which is inflammation of the membrane of the heart. 2 _lupuspernio, which causes purple swellings on the ears , nose , and cheeks. 3_ lupusvulgaris, a rare form of tb again affecting the skin, more so the head and neck . these are painless clear, reddish brown nodules which ulcerate which after a while heal leaving deep scars . basically its an autoimmune disorder. sorry about the messy answer, stay well , my bruv lives a near normal life , so hopefully most sufferers will, x