Getting signs of a third auto immune

I was diagnosed with Subacute cutaneous Lupis earlier this year by a Rheumatologist and I have been hiding all summer and working and staying indoors to avoid any skin problems for the rest of last year and into this year. I went to London, 5 hrs drive from home to see a specialist out of frustration & to move things along, he was great and diagnosed Sjogrens. I am thinking a third auto immune is appearing ie cold fingers (I also get tingling on one hand) so suspecting Raynauds as well? Still on a waiting list to see a dermatologist locally (another month).

I read this is common, does it keep getting worse once the lupis gets a hold of you? Trying to figure out if the medication I am taking is causing me problems or these other auto immune problems? Rebelled and went in the sun a little (it was so nice) and I thought it was late in the day and was in a fog and could not articulate very well day later. Getting a bit down.

7 Replies

  • Hi Maggie, the thing to remember about cutaneous Lupus (I had this first) is that getting some sun doesn't just trigger a rash and swelling it can affect any organ triggering a flare which can last week's. My current diagnosis is SLE, Sjogrens, and Reynauds which I believe is quite common.

  • I think getting more auto immune diseases is quite common unfortunately. I also have SLE, Reynauds, Sjogrens, and added to that I have Ito immune hepatitis and fibromyalgia.

    I also have been warned not to go in the sun. I get a bad rash usually on the top have of my arms and feel terrible for days or weeks afterwards. Foolishly I went to visit a friend in the south of Spain a few weeks ago. Although I tried to stay to stay in the shade it was impossible all of the time. For about a month after j got back I couldn't move of the sofa I was so fatigued.

    I wish I could find answers to get to the bottom of these illnesses. I've tried everything. The only thing that has helped me some is taking apple cider vinegar daily in water, coconut oil throughout the day, and sea salt with water. I tried this as they all have antibiotic, antiviral qualities. I had read a book called the new arthritis breakthrough and they were using antibiotics for auto immune problems with quite good success. So I tried natural antibiotics.

    My rheumatologist asked me what is been doing as I was always under weight and had a lot of stomach problems. It really did sort all that out. I haven't been taking them daily like i did before because of circumstances but I'm going to start again.

    Also I've read that auto immune usually has a thyroid connection so it might be worth taking some natural iodine.the book is worth a read. I can't remember the author unfortunately.

    All the best

  • I'm sorry to hear you are down I am unfortunately in the same boat, could I ask how you got to see a specialist in London? Did you have to get a ref feral for your gp? I've had poor circulation for years and also have tingling feet and hands doctor told me this was a mild kind of nerve damage..? I hope you get some answers soon a big hug! Xx

  • Hi Thank you for writing, I have been off the site for a bit, working etc. I saw Prof. D'Cruz at London Hospital, I was fortunate he had an opening for an appointment when I was in London for a conference. The NHS here are not keen on referring outside of the area, fortunately my twin sister was familiar with the doctor and hospital (he is also attached to St. Thomas) and she made the appointment and I went privately. I gave him a summary of my medical and the tests taken to date which helped for a more thorough appointment.

  • If you are experiencing cold and tingling fingers then this could be a sign of Raynaud's. This is an overlap condition for about 1 in 5 lupus patients. It won't necessary continue to get worse, and in fact may be well controlled by avoiding triggers and taking treatment (if necessary).

    It can sometimes be difficult to differentiate symptoms of autoimmune conditions and the side effects from some treatments. Did you notice a trigger for these symptoms (started a new treatment/higher dose or had an environmental trigger)?

    If you need more information about lupus, I would be happy to send you one of our free packs. Just send me a private message or email with your name and address.

  • Many thanks for the replies, I am back online at last with some time for myself to rest ie holidays and reply. I was very disappointed in my appointment with the doctor 'who has a interest in skin' not a dermatologist who I was referred to, he listened and would not make any referrals outside my NHS area to doctors familiar with treating SCLE. He listened and had no advice for any of my secondary autoimmune issues, nor for the SCLE, I felt it was a waste of our time. I was reducing my hydroxychloroquine as advised (for the winter months) and became so very tired and achy as a result, so have gone back up to the dosage I was taking so I could function better.

    I am not in a hopeful position in feeling confident in medical care. I have made contact with Rheumatology and I am hoping they will take me back on their list. Happy New Year.

  • I have recently been diagnosed with PsA And Psoriasis dose that mean I could get all these other autoimmune disorders I have dry eyes mouth and down below. And my pulse has started to go over 100 been for ECG and that was ok ?

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