Newbie here.
Not diagnosed with lupus nor Sjogren's, though I do have symptoms of both. I've had this weird rash on the back of my neck, into my hairline for a while now. Any ideas if it could be lupus/Sjogren's related?
Many thanks in advance for any replies.
Grumpyold - could I ask what your symptoms are?
Any rashes can be significant. Certainly autoimmune diseases causes rashes but otters too. Were you wearing your hair up and exposed to the sun?
Kay
Hi KayHimm
Thankyou for replying. No, I hadn't worn my hair up . Just found the rash by chance.
Symptoms :joint and muscle aches, pains and weakness, fatigue, gritty, dry eyes, blurred vision, dizziness, bladder pain, dry mouth, difficulty swallowing, severe hair loss at the front, brain fog, swollen wrists and one ankle plus some other random stuff.
I also have Hashi's so some symptoms are common to other health issues, though, my thyroid levels are good and core vitamins and minerals too.
I also have rosacea, so I always keep my face out of the sun and wear factor 50 on exposed bits of body😎
Have you been tested for autoimmune disease besides the thyroid disease? My rash was actually what sort of finalized the diagnosis.
If you could see a dermatologist fast, that would be the direction I would go. If you have a rheumatologist, seeing them would be good, too, but they can’t biopsy rashes and might refer you anyway.
Sjogren’s is more common in middle age women, lupus is more common in younger women. But many women with lupus also have Sjögren’s syndrome and thyroiditis. I have UCTD and both.
You definitely need to have the rash looked at.
Kay
Hi. Thankyou again.You have convinced me that I ought to get it looked at. My GP is pretty useless unfortunately, and wouldn't try to diagnose my rosacea so I did go to a private dermatologist. I'll contact them again.
I haven't a rheumy at the moment.
Only got the one autoimmune Hashis diagnosed (so far) but I know they tend to hunt in packs.
I developed the Sjogren's symptoms about 15 years ago. I'm 68 now, so that would make me middle aged when they first appeared.
Many thanks for your advice.🫂
Hi Kay, I have talked to you a bit about Dysautonmia. From the biopsies of the stomach and intestines, increased mast cells appeared as well as mildly elevated trytase. I know Mast Cell and Dysautonmia go together. One of the reasons, the gastro doctor tested for mast cells.My question is that although I am doing some of the protocal, I am feeling that the issues of the gut are difficult to calm. I will be seeing my immunologist in a month, but just wondered if you have any thoughts on this. I had a very rough week, more than usual. Add to lupus and other issues, I am trying to just accept everything and not expect any miracles. i know you are very knowledgeable.
Thanks and healing hugs.
Hi Pumpkin,
I know the mast cell group at Brigham and Young is focused on the GI effects of mast cell disease and had treatment success.
There is something called autoimmune mast cell disease where you attack your mast cells. You might want to ask your immunologist if they think you have this as part of your lupus.
Let me see what I can find. Dr. Lawrence Schwartz is one of the world experts in autoimmune mast cell disease.
Hope they find better treatment for you.
XxK
I too have a rash in same place as you. I have been on the waiting list for 6 months to seek the opinion of a dermatologist for months for acute hair shedding (Telegen Effluvium) with chronic scalp inflammation (no scaling), which I have had for over two years; She prescribed iron medication for 6 months for iron deficiency. The meds improved my health generally but not my hair shedding nor scalp issue. I am now on a list for a biopsy, likely to be in 2 to 3 months wait. Having waited another 8 months to see the dermatologist last week, she gave little time to answer my questions, due to an overload of patients, so I still was not given any lotions to treat the sore scalp. I do have other health conditions but in my opinion none of the consultants/GPs are joining up any dots to see if my conditions are related. To the dermatologist's credit, she was the only medic to point out that my iron results were deficient having check online the results taken on a long time; why had none of my GPs picked up on this!
It's nuts isn't it,the way the medics seem incapable of seeing the whole picture and joining up the dots. Like you, I have other health issues too.My hair loss is severe at the front but my vits and minerals are all fine. Iron is not a problem for me.I've never seen an NHS dermatologist. My scalp doesn't scale nor itch but I do want my GP to refer me somewhere regarding my rash. I'm scared of it spreading and becoming noticeable.
Good luck with your biopsy and I hope you get some answers/help when you next see someone. 🫂
My mum had exactly that rash like and she lupus. Sending love xxxxx
I had this but on top of scalp and hair loss patch, I would try and see a dermatologist if you can, I wasn't seen and after steroids it cleared up but as there's probably a lengthy wait to be seen id ask for referral now. good luck
Thankyou for replying. I am expecting a long wait to see a dermatologist, if my GP actually agrees to refer me. The track record at the surgery is pretty dire.Glad your rash cleared up after steroids.
Hope your hair grew back too.
Take care,🫂
I understand , my gp has refused to refer me numerous times and I had to go other avenues which is lengthy and in hindsight I can say if your gp is of no help then id go to another one for a second opinion. My surgery is awful and a gp, well all three there have done nothing to warrant my respect sadly.
I have a many different rashes ,blisters , indents all come and go and my head did clear uo and hair regrowing but then I do get elsewhere .
is there a good pharmacist nearby who could take a look? If gp cant give anything for or have any idea what's causing it then he should refer you to someone who might know. Have you tried anything on it? or all else failing maybe your private dermy may be able to help. and I wish you the best of luck , its so hard when you dont have a good gp I know
best wishes 🙏
I honestly don't know why half these GPs enter the profession. They seem to be just a bunch of robots saying "computer says NO". Whatever happened to looking at a patient's symptoms? Now, they just look at blood test results and then dismiss you.
Sorry to hear you've had so many different rash problems but pleased for you that the hair did grow back.
I have tried Soolantra (Ivermectin) cream, Timodine and Azelaic acid cream, but probably not given any of them long enough to work before trying the next one.
The pharmacist is equally useless but this time I'm not going to let my GP fob me off and I will try to insist they refer me to someone. I have my own theory as what might be causing my rash (Sjogren's possibly) because I have so many symptoms of it, but convincing the medics is another matter.
Thankyou for replying and take care 🫂.
Hi. I had a rash like this for about 4 years. No known cause. I tried changing shampoos and all hair products and yet the rash appeared again and again. I tried numerous creams and then I found a cure for it. An ointment called Betnovate. I only need to use it sparingly and it clears up. Im currently being tested for various problems through immunology and on waiting list for rheumatology. They are querying some type of autoimmune problem. And I also have high inflammation levels all the time. Hope you get help with yours.
Thankyou for replying. I'll look into that cream.
I'm thinking I have some other autoimmune problem, in addition to the ones I already know about. My CRP level was OK when GP requested blood test so no clues for me with inflammation markers.
I hope you get your appointments with the rheumy etc soon. Take care 🫂.
Just got back from the surgery. Was only allowed to see a nurse practitioner....one that has lied to my partner in the past, so I wasn't hopeful!.....and she looked at the rash and said "it's just you." WTF! 🤬 Then she said, she thought I 'd had it a long time, despite me already telling her that my hair cutter says it wasn't there when I last had a cut less than a month ago.
She did say she'd give me a script for Betamethasone Valerate and if it didn't clear up, she' d give me a betnovate scalp review. I just looked them up, and they seem pretty similar so fingers crossed.
Thankyou.
Fatigue has reached a whole other level, after 10.5 years. Scared it’s narcolepsy….
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