New to lupus would love to hear from others with lupus i had never heard of it before now.

[laney]

[Jude65]

Hi Ianey,

I take it that you, yourself have been diagnosed with lupus? How are you coping? What would you like to know?

I have had lupus for nearly 20 years and am still going strong!

Jude

[laney]

Thanks for getting back to me,i was diagnosed about a year ago i started with a rash and just being really tired, i was put on Hydroxychloriquine which seems to be ok but its the tiredness i cant cope with. I was working part time as a healthcare assistant at my local hospital but i was struggling with the shifts so i have gone back to working for a nurse agency so i can work when i feel like it but up till now i havnt felt like working which is really getting me down im only 36 and i just feel useless.

[bettie]

Hi laney

I was diagnosed nearly 3yrs ago and I am still learning. At first I tried to hold down a fall time job but I could'nt I had to go part time, and I also felt useless, but not now, you will learn to come to terms with lupus and this web site will help it did me. Take Care

[pinkyspiercings]

hi laney

iv recently bin diagnosed with lupus but have had the tiredness and pain of about 3 yrs i used to just fall sleep when we had friends round as the tiredness would be overwelming lol but im on the same med as you im on one twice aday and another pain killer as i started with pain again in my wrist ,im a part time care assistant to and a body piercer and i am managing better with the tiredness now i try and grab a nap ,iv aways had a rash on my face i thought it was normal as its not sore its just redish but i do get the butterfly brown marks on my face quite bad but that is alot of my own fault as i will not stay out the sun as i love sunbathing ,the doctors keep telling me off lol ,hope your tiredness improves take care

heidi x

[Jude65 in reply to pinkyspiercings]

laney, if I could just give advice about the sun....best to take note of the doctor's advice to stay out of the sun because lupus can flare up in other parts of the body, not just on the skin, which might be more serious. Do you wear 50 factor skin block?

[laney]

yes i wear factor 50 thanks for asking but i dont really go in the sun ive got very fair skin so ive always kept out of it even before i was told i had lupus.i have always had a rash on my face which i never throught anything off till now.I get a really sore mouth and aching joints but mostly only down my left side is this normal?

[mstr]

Hi Laney, Hope you are ok and managing your diagnosis Can I ask how long it took for you to be diagnosed from beginning of symptoms. My GP is stating that he has no doubt I have lupus but my rheumatologist is still saying UCTD. I have had three positive ana tests in a year, stiffness, joint pain, aches and now myalgia. I have also recently been referred to an endocrinologist for thyroid nodules too. It has been 15/16 months since symptoms first developed. Like you I am learning to avoid the sun.

This does seem a good site for information so I'm glad I have joined Lupus UK.

[laney in reply to mstr]

It took about a year i started to have loads of symptoms but i hadnt even heard of it i was rushed in to hospital with a relly bad rash on my leg and lots of swelling,blood in my urine ,aching joints i was really poorly with it.It is so hard to understand and learn to slow down im still learning but im finding work really hard ive been off since nov11.My rheumatologist was really good it was him who said it was lupus and now im being treated things seem to be a bit better but i still do have a lot of bad days.I agree with you this site is really good with lots of info.

[AngelaW in reply to mstr]

Hi mstr, i have lupus and Undiagnosed Connective Tissue Disease, my rheumatologist talks as if they are one and the same so I've just assumed they are! Recently started having real problems with a lung and the talk is mostly about UCTD but lupus is also thrown into the conversations.

[mstr in reply to AngelaW]

Hi Angela,

Thanks for the reply, I get confused as he has said UCTD and then the next appt states I now have more symptoms of Lupus. I hope to get some further clarity on this. Hope things go ok with regards to your newer problems re your lung.

[mstr]

Hi Laney, thanks for getting back to me. I think I am almost there with the rheumy too as last time he said it was more lupus symptoms. Am on placquenil 400 mg daily which helps and have had 3 steroid injections too. I agree it is very hard to adapt to this and like you I had never heard of lupus until mentioned by GP after positive ana and joint pains and swellings in hand etc. I am learning now that I need to plan more, rest more too. Like you I have not worked since September 2011 and this is so unlike me but the fatigue was overwhelming initially. This has improved since being on the placquenil. It is reassuring to see a site like this and to know that we are not alone. My adult daughters and husband are supportive which is great but there are so many emotions that one goes through with this illness. I hope my rheumy is more decisive soon, particularly in the light that this seems to have affectected my thyroid too now see and have to see an endocrinologist now. I am so pleased that we are able to talk to people who understand the difficulties lupus holds. Take care.