[spook]

I get rashes on my forehead and the dermatologist has told me I have a mild lupus and not to worry. This was diagnosed after a skin biopsy. Going over things in my head and reading about lupus I'm wondering if i should get some more tests. I will be attending the dermatologist again in a month as I have been put on roaccutane.
When I was 11 or so got diagnosed with ME and i still suffer with tiredness at 33. I also get alot of Migranes and sinus infections and different infections. Went through a spate of appendix infections, conjunctivitis, Abyscess with extended antibiotics which brought out the rash. Since then I still get abyscesses and 1 lymph node is always swolen. In the last year this has flared up a few times and puts me out of work for a few days at a go.
Would like some advice. Thankyou

 

[x_claire_x]

Hiya.. I think if your dermy has told you that you should be referred to a Rheumy... they are the one who usually diagnoses and treats auto immune disease.They can also co ordinate any drugs you may need and all the tests etc to establish what your exact diagnosis is.... eventually!! It may take some time so beware. Start a daily diary of symptoms and grade any pain 0-10.. also photos of any rashes, swellings etc etc. Ask your GP for a referral, sounds as if you have a good dermy there though... all the best.
Claire X

 

[keebler]

Hi Spook,

I agree with Claire, you do need to see a rheumatologist that specializes in lupus. We all have more than one doctor who are all involved in our care.

Here is a page from the main section of this forum. It talks about the blood tests that are ran one time or another.

http://www.uklupus.co.uk/tests.html

Take care and let us know how you are doing.

Love,
Lyn

 

[Lily]

Hi and welcome,

I assume he has put you on Roaccutane for Acne? Or have you been taking it for a while before he diagnosed mild Lupus? Roaccutane can cause a drug induced Lupus, not sure if you knew that?

love
Lily

 

[debatat]

Hi and welcome to the site. You have been given good advice. I hope you can get a referral to a rheumy who will do the necessary blood tests. Claire has given you an excellent suggestion about the symptom diary.

Take care

Deb x

 

[Clare.T]

Wecome to the forum spook

I am glad you found your way here because this is all very odd!

Firstly, the first drugs used for treating lupus, including when lupus affects only the skin, are anti malarials, most often one called Plaquenil/hydroxychloroquine. This might be the only drug needed to control skin lupus and the less severe forms of SLE. Accutane is only used when the skin lupus has not responded well to all other well established treatment options and I suspect even less these days when there are one or two newer options. Accutane can have a number of unpleasant side effects.

When skin lupus is diagnosed it is absolutely essential to ask the patient about health in general to see if there are any symptoms that could be caused by more systemic forms of lupus. A number of blood tests would be done such as full blood count,tests for various antibodies and a urine test. It is not a question of woprrying, but is certainly is of getting the best care available and treating the skin lupus properly. Most of us are rightly very concerned about having rashes especially on our faces.

You have had rather poor health for years which I am sorry about. Some of the problems cvould well be cause by undiagnosed lupus. I hate to think how many people are diagnosed with ME or CFS, who in fact have lupus. "Mild" simply means no organ involvement but that doesn't mean it shouldn't be treated or that it can't make life a misery

I am wondering what antibiotics you have been on. Please get further care by seeking a second opinion about the treatment and the diagnosis. Read the symptoms list to see how many you recognised from your own healh history. We have a couple of Irish members who can help you work your system and you can ask for doctors in your area in the 'find a doctor 'section. Please let us know how you get on.

Bye for now
Clare

 

[spook]

Thank you all for your advice. The roaccutane is for acne and I only started it the day I was diagnosed. I'm starting to see the side affects already. my back is killing me and my joints are starting to act up.
The dermatologist never asked me about my health and i did tell him my lymph node as flared up twice in the last few weeks but he didnt say anything. Also he didnt say anything about refering me to the Rhuemy.
I'm putting together a list of all the infections etc and will speak with my Doc. Also spoke with mum this evening and she wants me to wait till she comes home on Wednesday to make sure i have everything together before i do anything

 

[ElephantEyes]

Hi Spook -

I didn't see your post until just now - I'm just wondering how you have been keeping since you last posted?

I'm from Ireland too and I was first diagnosed with Discoid (skin) lupus by a dermatologist. I had mentioned to my doctors that I was fairly tired but this didn't seem to concern them unduly. I was not referred onto a rhuematologist either. Two months later, I got extremely sick and it turned out that I had SLE.

Do post and let us know how you are getting on - I'm not sure what part of Ireland you are in, but if you have any questions I'll do my best to help you.

Take care,

Nellie