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Hello, I am new to the site and to the whole lupus thing. I have skin and hair lupus. I think it has moved to my insides but cant seem to be diagnosed. i dont know what to do, please if you have any advice or anythig please let me know. I am in Seattle WA. any advic or doctors or websites will help.. Thanks so much im lost and confused and in major pain...

charlene
 

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Hi Charlene,

Others with more knowledge will be along to offer you advice. I wanted to welcome you to the forum and I am happy you found us here. You will find a lot of great information here as well as support too.

Who diagnosed your Lupus? A Dermatologist or GP? I assume you have not been to a Rheumatologist yet??? Once you get on the proper medicine, usually Plaquenil you will start to feel better. It can take up to 6 months to work.

I tell new people to go out and buy The Lupus Book by Dr. Daniel Wallace. He is a world renowned Lupus doctor and this book is written in laymans terms so it is very easy to understand. It is the best thing I ever did when I was diagnosed.

Take a deep breath and try to relax. I know it is scary but once you learn about the disease process you will see that it can be treated and you can get to feeling better.

Hope to get to know you better and feel free to join us in the chat room sometime.:wink2::wink2::wink2:
 

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elisabethm
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:welcome:Charlene this is the best place to be as there is allways someone that will get back to you.Even if you are needing to rant then you can there will be someone that will give you more advice than i can.Elisabeth
 

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Charlene

welcome you are not alone we are all here for you. Don't worry once you've been sorted with meds you will be ok. My hair grew back.

take care big hug
dixy
 

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Hi Charlene, yep find a Rheumy who has experience in auto immune diseases and take with you a diary of symptoms and any photos of skin probs etc.. it is useful to do a pain scale of 1-10 for every day etc. You will need a referral from your GP and have alot of tests for confirmation of Lupus as it mimics alot of other illnesses. I am not sure from your thread whether you have actually been diagnosed as such? There is a list of doctors on this site so you should find one in your area. The quicker you get treated the quicker you will get some relief from the pain.. I hope you find somebody helpful very soon,
Claire X
 

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The Other Illinois Tammy
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charlene,
Hi and welcome to the site. You are not alone it can be a very scary disease. It will be okay you are with friends that understand. There is a chat room that you can go into to make friends, talk about your fears, get advise about anything with instant feedback, and you can also offer help to others. Yes, that is right you can even help someone else. I know how strange that sounds, I did not think at first I would have anything to offer anyone else. As I chatted with people more and more I found that I did know more than I thought.

I do some searching on the net but for the most part this is the only site I have found that has it all. The support, the education, and the threads that help the most as others are going through what I am. The mods here are very educated about different meds, treatments, doctors, and yes more than lupus (they pretty much know about all the lupus's also). If I do search the net and find something I bring it back here to find out if it is trusted information, as everyone here educates each other.

If you are in that much pain I would be talking to my specialist or my gp for a pain pill. There are many on the market and it might take some time to find the one that works best for you. The next thing is to think of what is the main problems and with your doctors start planning a management plan that will work for all of you.

The best education is the one you get from life it's self. By this I mean as time goes on you will become smarter about your triggers and what causes the flares for you. I hope you start to feel better soon.
 

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Hi Charlene,
Welcome to the board. Hopefully you will find that we are here to support each other.

I grew up in Seattle. Who are you going to as your rheumy? Many of my doctors are in Seattle, so can help you there. I live north of Carnation, but as we know here, we commute to what we must do.

Let me know how I can help.
Sally
 

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Hi Charlene and :welcome:

I agree with the others. If you don't already have a rheumy then it would be the best place to start. You also need to make sure that the rheumy is one who is experienced in lupus (not all of them are).

Once you get to the right docs and have appropriate treatment, your quality of life and whole outlook can change dramatically for the better.

Keeping a regular symptom diary is also a very good suggestion and can provide you (and the doc) with a much clearer idea of what's going on.

It might also help to take a look at the SLE classification criteria to check if there are things there that fit with what you're experiencing.

http://www.thelupussite.com/forum/showthread.php?t=33123

bye for now and hugs :hug:

Katharine
 

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Welcome to the forum ! :)

It might help you to know what can be expected from doctors who are doing a competent job.

Presumably it was a dermatologist who diagnosed the lupus and presumably there is no doubt that you really have skin lupus. Ideally this would be confirmed by biopsy but some doctors are confident and competent enough to recognise very typical cases.

The dermatologist can be expected to closely question you about general health, health history and other symptoms. He might also order blood tests and a urine test as part of the process of deciding whether to refer you to a rheumatologist or not. The main thing is that these tests must be done when skin lupus has been diagnosed to determine if there is also systemic disease, whoever does them, the dermy or the rheumy.

There are three main sorts of lupus specific skin disease. Specific means associated only with lupus and usually biopsy proven. The three groups of skin lupus are :

Discoid lupus, the most common sort not usually associated with systemic disease; most oiften on the face and scalp. If it below the neck it might have some systemic symptoms and blood work too
Subacute cutaneous which is often associated with various less serious symptoms of systemic lupus and relevant blood work but rarely with organ involvement;
The malar rash often known as the butterfly rash which is a classic sign of systemic disease. Malar means on the cheeks but it can also occur on the body. It could be useful to you to know more exactly what sort of skin lupus you have been diagnosed with.
I am sorry you are in so much pain. This certainly needs investigating and suggests the next step should be a rheumatologist especially if the dermy did not ask you about other possible symptoms or do the usual blood tests

These days the oral medicine Plaquenil is usually prescribed from the get go for cutaneous ( skin ) lupus. It is very effective for the skin and is also an important medicine for general disease modification, to help stop the skin problems spreading and new problems developing and it will help with other lupus symptoms such as joint aches and pains and fatigue.

If this was not prescribed, it is reasonable to ask why not.

Please let us know of any additional questions. Reading the ifnormation facts is one thing but getting an experienced and understanding take on it is can be invaluable.

Bye for now

Clare
 
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