I have Lupus but don't have the luxury of having a Rheumatologist. They are too far for me to travel and the local hospital doesn't have one so I am guided by my GP.
I am getting hot spots on my legs like I've burned them and recently when I drink I get a cold spot on my chin and I feel like I have spilled my drink.
My GP says keep an eye on them but I'm unsettled and a bit scared about this.
Does anyone have anything similar and what is the cause?
Hi gull, I'm from central QLD. I have seen my rheumatologist once in Brisbane and we Skype monthly. You only need that first visit which will go a long way in managing your lupus. Have a wonderful Chrissy.
Skype is a great idea. Marry Xmas & Happy New Year to you Debba. Kaz x
Hi Gull, I'm an Aussie too but currently living on Vancouver Island in Canada. Love your photo! Do you ever get marks associated with the hot spots? I get the "burning/burned" sensation usually on my forearms and backs of my hands and sometimes on my shins. There is never a mark but it definitely feels like I've scalded them with boiling water (to the point where clothes can be downright uncomfortable). Generally, the feeling wears off after about 5-7 days. Its arrival and departure appear to be totally unpredictable. I find Ibuprofen and, if you are not sensitive to aspirin, Alka Seltzer are both very useful anti-inflammatories for this condition. I haven't experienced the cold spot yet so can't comment on that!
Good luck and happy Christmas (Boxing Day for you now...)
Alexandra
Hi Gull, Kaz from Currumbin here. I very much agree with the first poster that you need only see a Rheumatologist or Immunologist initially a few consecutive times then maybe 6 mthly or less. You do need a G.P. that is familiar with or prepared to be interested in Lupus. Will contact you again this week. Happy Xmas & New Year. Best Wishes Kaz x
Hi Gull: GRRREAT pic of your feathered friend...am so wanting to know his/her back story 😆.
Am glad you've got really good replies from downunder...i think it's fantastic we come from all over the world to meet here
I agree with everyone's replies, so haven't got much to add...just want to say I'm glad you posted
Merry Christmas & happy 2017
🍀🍀🍀🍀 coco
Great advice from others and welcome from me. I was Facetimed by my oldest son of 24 last night - he's living in Sydney and I'm on a Scottish island where he's from. We watched him open his presents while our fire glowed his fan whirled! He and my youngest son even compared notes on who's eczema was worst?!
I had two consultations up here in my small local hospital by webcam - one with my rheumatologist and one with my neurologist - both were good although the technology had improved by the second consult with neurologist, and this was important. If you need to be examined then perhaps your GP could arrange for this webcam consultation to take place in their office/ surgery annually? This way they would get the support and build up a working relationship with a specialist too?
I'm moving down to the Scottish mainland soon. But I have to say that in some ways things ran more smoothly up here because the geographic isolation means that GPs are used to working more closely with specialists and have to acquire much greater specialist knowledge themselves than your average city GP too.
There is an Australian Sjogrens Syndrome HealthUnlocked community that may be useful to you to join as well so that you can ask others Australians about rheumatologists. Ironically I use Lupus UK but don't officially have Lupus - so if you don't have Sjogrens then please don't let that put you off joining the Australian SS community regardless.
Your sensory issues sound very familiar. I have small fibre neuropathy as part of my Sjogrens. But it could be a CNS issue so you may need some nerve conduction studies if it carries on. Happy Christmas from a windy Scottish island☃️⛈❄️💨🎄
Gull,
You need confirmation that you do indeed have lupus. I assume your GP has run a multitude of blood tests to confirm the diagnosis: CBC, ESR, CRP, ANA, dsDNA, Anti-phospholipid antibodies (now considered one of the criteria for classifying someone with lupus - about 50% of people with this antibody will get blood clots over time), Chromatin antibody (60% of people with this antibody will develop lupus nephritis), Coombs antibody (also now considered one of the criteria for classifying someone with lupus), Ribosomal P antibody (this antibody is 100% SPECIFIC for SLE - systemic lupus erythmatosis). ALL THESE TESTS ARE IMPERATIVE! There are other autoimmune disorders that could conceivably cause your problems, that is why you need a definitive diagnosis.
If I can be of any help to you, please contact me.
Dr. S. (in the USA) Retired Neuro-Ophthalmologist
P.S. I also have lupus and demanded all the above tests and others (to confirm I did not have RA or Sjogren's syndrome. I realize in the USA it is easier to get all the above tests done, and even easier when you are a Physician (which I acknowledge is not fair). However, if you do have lupus it is absolutely necessary that you are put on Plaquenil....it is an anti-malarial but it has been shown to decrease the chance of developing a vasculitis and been shown to increase your lifespan.
I AM ALWAYS HAPPY TO HELP!
Hi and welcome to the forum. I get thesefeelings of hot on parts of mybody regularly i also get a numb feeling overmy lips ,i have APS so i suspect that's causingit. You should get this checked out . Ps. Hope you had a good christmas all the best Elfie.
Happy new year to you all. Wow! I haven’t been on the site for ages and had no idea there were so many caring people who have taken the time out to share their experience and offering advice. Thank you, you are all awesome.
A lot has changed for me since I started my journey on this site.
The Sunshine Coast University Hospital has finally been built and I now see two immunologists and I’ve had all my tests and I’ve been diagnosed with a nasty form of SLE . I take Planiqual which began to work after a couple of months and for pain I take Suboxone films.
The best part of it is that I can catch the bus there and luckily I am bulk billed which means it is at no cost to me.
If I can help someone in return I will give it my best.
Thanks again and welcome to all the newbies
Gull
Hello I'm a Newbie
Hello, I'm in Canada but suffer from lupus too, along with raynauds, serious gut problems they won't do any more surgery on and and and, but
Hello from a newbie
Sores back of throat 
