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Hi all
Have read all your messages for quite a while now, but just plucked up the courage to do this. DX in April 2006 at the age of 57. Came out in a rash all over body apart from face, told by GP Chicken Pox. went worse had skin biopsy, came back as basal cell carcinoma, wrong diagnosis, god help us if they can't get this right. skin biopsy re-done came back as Lupus. Sub acute cutaneous at first, but now changed to SLE. On Pred. Methotrexate, Plaquenil and allendronic acid for Osteoporosis. Sometimes wonder if it is the medication that makes me feel worse than the SLE to the point where I think should I stop it all and see how I go. Very supportive husband, but does tend to go overboard to the point where it is driving me crazy his constant "how are you feeling". Shouldn't complain. Now started to suffer with depression, on meds for this. GP hasn't a clue and didn't help when he said he had one other patient with Lupus and she was drug free, implying that I should also be drug free. Get more help from Practice Nurse and also Registrar at Hospital, spends more time discussing things with me than the Specialist.
Sorry to drone on, but need someone to speak to who knows what its all about.

Bye for now

Meryl
 

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I'm glad you plucked up the courage to join, I posted a message a few days ago and received lots of very supportive replies, it's good to know that there are people that care. Keep strong, and don't let the docs get you down, hopefully when they get you on the right medication things will improve.

Take care :)
 

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Hi Meryl and :welcome:

I'm gald you have decided to join us here! There is a wealth of support and information on this site and no-one should be without!

I'm astounded by that first diagnosis - how could they come up with something so different???? Maybe there are similarities we know nothing about - Weird and wonderful indeed!

It's great that your husband's so supportive, that means a whole lot. Mine has given up asking how I am - not out of lack of interest but because I asked him to :) He can see when I'm doing well. He's wonderful in that he remains optimistic even when I feel down but in a nice quiet way. He knows there's no "miracle" around the corner and doesn't expect me to to rush things.

Your GP's comment is not particularly helpful. I would think that most people with SLE are on medication, including those who are doing well and in "medicated" remission. On the other hand maybe he's just trying to motivate you in his own way, in saying that it is possible for some people.

I'm glad to hear you get good support from the practice nurse and the hospital registrar.

bye for now,
Katharine
 

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Discussion Starter #4
Hi I am new here

Hi
Thanks for your quick replies, it is good to know I am not on my own.

Thanks once again

Meryl
 

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Meryl,

You came to the right place. When your in the site next time stop into chat even if no one is there,, If someone sees you they will pop in.
There are a lot of wonderful people here for you to meet and chat with.

My day always seems better after coming here. Hope your day does too.

Good Luck
 

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Hello Meryl, you see we aren't at all frightening.
If you haven't been on Methotrexate long it can make you feel bad to start with. It is worth it though.
x Lola
 
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