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Hi Cassy,

It is nice to meet you, welcome to the Lupus Site.:)

You have come to the right place to learn about lupus.

It sounds like your dermatologist is a good one. Finding out that you have lupus is a roller coaster ride of emotions.

Getting on the right meds will help you feel better. Some of the meds take awhile for you to get the benefit from them.

I hope you get your referral soon. Finding out about lupus is good. Knowledge is power. That way you can talk with your doctors and know what is going on.

Take care and let us know how you are doing.

:flowery:
Lyn
 

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Hello Cassy and welcome :)

I'm sorry to hear what bring you here but glad that you do have a diagnosis. It is the first step in getting good treatment.

The thing I'm wondering here is whether you most need a specialised dermatologist or a rheumatologist (or maybe both?). Are your symptoms limited to dermatological complaints or do you also have joint pain, fatigue and so on? I presume there is a reason why the dermy is saying that you should see a rhemy?

Lupus specialists are hard to come by so it might be an idea to post here in the "find a doctor" section to find a specialised dermy and/or rheumy in your area.

Try no to worry too much. The best way to handle this disease is to take things one day at a time. With the correct treatment and supportive doctors you should see a big improvement.

hugs :hug:
Katharine
 

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Hi Cassy! Welcome, I'm new here too! I have only been here a day but i find it to be a huge help already. I'm glad you found this website too. I have a friend and her mother and aunt have Discoid Lupus. It's ironic because i never knew that until i got the disease. They both live regular lives. Not too much sun though because the rashes on their faces will show up and the one has some hair loss due to the disease. I hope it all works out and they can find something to work for you. I also think that a specialised dermatologist would be better for any sort of rashes or skin problems. My rhuemy is an amazing doctor though and is specialized in Lupus so it woudlnt be a bad idea to go to one just to ask questions.
 

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Welcome to the forum Cassy

Thanks everybody for your kind words. I will search for a rheumatologist on your site. I didn't know there were specialized dermatologists, but if there is one nearby, I'll look into that too. My dermatologist discussed putting me on Plaquenil, wants me to see the rheumatologist for some tests first though.
I do have fatigue and wrist pain/finger stiffness. Not sure if it is related, I just had always assumed it was me getting older.
I was able to make an appointment today with my family doctor for Wednesday. Then, I can get a referral for the rheumatologist. Like you said, one day at a time.
It's good to know I have such nice and knowledgeable people to discuss this with. Thanks, cassy
I'm sorry about the skin troubles but thank goodness this dermy did the biopsy. I wonder if the rosacea really is rosacea or if it could be a lupus rash - the 'butterfly' or malar rash. I am slightly surprised that your dermy wouldn't say anything to you about your situation and that she didn't do any testing herself. (I am also slightly suprised that she embarked on laser before finding out what the lesions are but anyway that's done now ).
I have seen both dermatologists and rheumatologists since my lupus primarily affects the skin. Every dermatologist has done blood and urine tests.

Your family doctor can do a full blood count, a urine test and an ANA test which is a screening test The first thing you need to do is make a list of any health problems you have in recent years and a health history leaving nothing out in either case. Make a note of any chronic health problems suffered by close blood relatives. Check out the criteria lists to see what you can already relate to.

All I can say is that worry is pointless. Most of the already diagnosed on the forum have ongoing problems. Few people whose lupus is well controled post on forums. Most that's online with lupus deals with the worst cases so dont let your imagination run away with you.

People are very differently affected by lupus even when they have an SLE diagnosis. Symptoms and severity vary greatly from person to person. I have a sort of skin lupus that is associated with systemic disease and actually I have an SLE diagnosis which is ridiculous cosndiering that apart from the skin I haven't had any other symptoms but mild to moderate joint aches and fatigue that have been dealt with very effectively by the medicines I take for the skin.

Try to get a rheumatologist who is familiar with lupus - not all are. It is well worthwhile making that extra effort. I hope you dont have to wait long but as I say the tests your GP does would be handy.
Even if there are no indications of of systemic disease in abnormal blood work or urine various slight symptoms of lupus might be found such as joint aches, fatigue, anemia, mild heart and lung problems. Most cases of lupus respond very well

Let us know how we can help you and keep in touch please :) There's information on the main site about symptoms, diagnosis and tests and there are articles about skin lupus linked to in a sticky post at the top of the Not Yet Diagnosed section.

Clare
 
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