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Hello

I haven’t been on here for a while as I had had numerous blood tests and was told “it’s not Lupus” then “it could be Lupus” “oh no it’s not Lupus” etc.

I have been trying to accept that I am never going to find out what it causing my skin problems and plethora of other symptoms. But it got too much for me a few months back, as I had a major flare and so my doctor wrote to the dermatologist to ask them to see me again.

Well I went today and they treated me like I was a new patient, which was somewhat annoying, when they have a huge file in front of them full of tests and information about my other illnesses. But hey-ho I went along with it and was doing alright until the consultant finished his examination and question asking and then he said it! “well it looks very much like Lupus to me” AAARRRGGHHHHH

Here I go again! How many times do I have to go down this road?

I understand that it may be difficult to diagnose, but surely when it keeps pointing back to the same thing time and time again isn’t it time for them to actually make a diagnosis, give it a name and then maybe start some treatment?

I am now four and a half years without name for this and at the moment I am having another flare and my lips look like I have had very bad cosmetic surgery!

Can anyone tell me where I can find some more information about sub acute cutaneous lupus, I believe this is what I have, but I can’t find much in-depth info on it.

Regards
 

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Hi Star,

I can't believe what a frustrating time you are having :hugbetter: it's about time one of them pulled their finger out and DID something about your health problems :mad: Did you ask this guy if he thinks it's Lupus then can we treat is as Lupus because your quality of life has been the pits for 4 years?

Here's some good info on SCLE, don't forget after you get to the bottom there are several more pages after the introduction.

http://emedicine.medscape.com/article/1065657-overview

Gosh I don't know what to say, just that you need to put some pressure on them or none of them are going to make a move by the sound of it :(

love
Lily
 

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Hi Star :wavey:

For some it seems that getting a dx of lupus seems like a never ending road of tests etc.

You mentioned that you have had some tests done but i was just wondering if you had had a skin biopsy, as that is one of the best tests to dx lupus with skin involvement.

I was lucky to see a doc who knew about lupus and his first test was a skin biopsy and it came back positive so i didn't have such a long wait for the dx but i am not sure how i would cope if i was in a situation like you are, it must be so frustrating.

As Lily said, if they think its lupus can they not start with some treatment and see how that works.

I really hope you get some answers real soon so that treatment can start and you can get on the road to feeling better.

Good luck :luck: and take care :hug: Jo :hug:
 

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(((Star)))

What a hard time you been having these past years.:(

Here is something I found about your question.

Subacute cutaneous lupus is a distinct rash that usually occurs in sun-exposed areas of the body. It starts as scaly patches which increase in size to form circular areas which gradually heal up without leaving scars. This type of lupus falls in-between the systemic form and the discoid form: people with subacute cutaneous lupus often have some of the blood abnormalities found in systemic lupus and frequently joint pains, but they do not usually develop the serious complications that can occur in the systemic disease.
Here is the web page it is on.

http://www.uklupus.co.uk/fact8.html

I agree with Jo, have you had any skin biopsy done?

Love,
Lyn
 

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Hi Star:

I posted yesterday, but it was a duplicate of lily's post. I was tired, so here i am to say hi!

I was DX with SCLE via a skin biopsy, all of my other tests are normal, so without the skin biopsy I would have been walking the same road as you.

If possible, I would strongly suggest that you ask you dermy to do a skin punch (painless process by which they take a pencil point size ample of skin), in the lesion and another in non-exposed skin (usually inner thigh or buttox) and test them for lupus. The reason for the non-lesional biopsy is that it too should come back positive if you have lupus and is used as a confirmation of the diagnosis. A flouresence type test is the most instructive and will show if you fit in the "lupus band" and if so, then you will be able to get treatment and be tested further for additional autoimmune involvement beyond the skin.

Plaquenil (an antimalarial) is a very affective, milder treatment for skin involvement and other autoimmune diseases. It has the least amount of side effects...however it does take some time to kick-in and you skin can be treated with steroid creams or lesional injections until it takes affect.

I am sorry you have been through so much, I hope you get answers either way very soon.

Stephanie
 

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Hi Star

I'm so sorry to hear that you're having such a terrible time. Why don't these docs pull their fingers out and at least start you off on meds to see if it helps. After 2 years I've just recently started prednisolone and plaquenil as the dermy team was interested to see whether I became a new lady. Indeed the change has been immense although am suffering at the moment as I'm having a major allergic reaction to the plaquenil. I believe I was given the meds because I'd had a skin biopsy and although it didn't say lupus it did show lymphocytic vasculitis which dermy said was building up a picture along with some odd blood tests.

Sorry I've gone on but what I was trying to get to was that I would ask for a skin biopsy. It took me having to bug them for a while before they agreed but glad I kept pushing.

Hope things turn around for you real soon. Keep your chin up and take care.
:flowery:

Mrs M x
 

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Hi Star,
Thinking of you in your differcult time, I'm still waiting for my test results & it seems that the DR is going to wait until i get my last test done. Which i am still waiting to hear when it is, and then it could be 6 months or more before i get to see that DR.

Keep pushing, it's the only way.
Gentle hugs.
 

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Hello

I just wanted to say thank you for all your messages and thanks for the additional info you have given me about sub-acute cutaneous lupus. It is very interesting, two of the pictures on the link given are very similar to mine and the info very relevant.

I would have replied before now but I have been struck down with some sort of flu for the past couple of weeks, which was a joy. It has left me totally wiped out, even more so than I usually feel.

I have some good news however! I have finally been given a referral to a Rheumatologist and have my appointment the middle of next month. So I now feel like I have at least taken a couple of steps forward instead of the usual three backwards!

Thanks again for your support and help!

Star x
 

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Hi Star,

That's good news, I just wanted to wish you good luck for your appt. Don't forget to go armed with information which supports your case ;) Any pics you might have, any abnormal blood test copies, what the other docs have said (and a question as to why you can't start meds - what are they waiting for ;) ) and a run down of your symptoms etc. I'm sure you know the drill by now, so all that's left to say is :luck: and let us know how you get along.

love
Lily
 

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Star,
Maybe you should ask for a biopsy from the dermy. The is how they found my sle. Have you had a biopsy? They are not the most pleasant things to have but they take some of the guess work out of what you don't have. I would make another appointment if you are still flaring and see if they would not consider doing one if you have not already had one. I take that your labs are not showing much. That is not surprising at all. We are called special cases I guess lol.

I hope that you are feeling well soon.
 
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