New to lupus

[Raven_claw]

New to this!

Hi I am new to any kind of forum but I have been searching for advice.

11 years ago I had my 1st blood test for lupus. I had and still have a butterfly rash, migraine and Raynauds. Blood came back all clear and dr said it’s rosacea.

5 years ago I developed double knee pain. X-ray put it down to wear and tear (I am in my 30s!) I have been paying for physio on and off since.

2 years ago I developed a strange patch of skin on my chest. Dr gave me cream and sent me away.

Before Xmas I went back and finally got a dermatology referral.

A couple of days ago I was diagnosed with cutaneous lupus following a skin biopsy. I’ve since had lots of bloods taken and am still waiting on results. The dermatologist has sent me on to secondary care at the hospital but I cannot get an appointment until June.

Even though the dermatologist asked my go to refer me to rheumatologist my gp was reluctant to send the referral. I had to pretty much beg! Is this normal? I have leg/knee pain everyday but as I’m still working and rarely see a dr about it they don’t seem to be taking me seriously.

Is it normal for diagnosis to take so long?

[Hidden]

Hi Raven_claw, while yes, a Lupus diagnosis generally takes awhile to get, you definitely should not have to beg. And if your skin biopsy came back as cutaneous lupus, then I’d say he’s given you a diagnosis that you GP should now take seriously. I’m so sorry you are going through this. My best suggestion would be to either push hard, or find a new doctor. In the meantime, please ask that all lab results be copied and sent to you and keep a file.

My best to you. 🙏

[Raven_claw in reply to Hidden]

Thank you for your reply. I am planning on keeping a symptom diary until I get the answers I need.

[hmbuss]

Yes am afraid it does take along while to diagnose lupus it took 7 years with me. Until then was under the haematologist. Just keep going back.