During my last rhuemy visit she said the following: "With lupus, we see all kinds of weird skin rashes in the summer from the sun, be sure to wear sunscreen."
I didn't really think about it at the time, but am now wondering if I have lupus in addition to the Sjogren's.
A couple of years ago, I asked if all I had was Sjogren's and she said yes. Guess, I will ask at my next appointment in six months.
Would love to hear your interpretations.
Thank you.
I went in to see the rhemy the first time because of the butterfly (moth) rash on my face. My first test was positive for lupus. 6 mo later my second test was negative. 7 years later I got the SICCA Dx. I believe they share common traits.
I agree with Joe S - they share similar traits but I have heard of folks who have been diagnosed with both too...if you are concerned you should call the rheumy and talk with the nurse or dr himself to clarify. Maybe something came back in some recent bloodwork.
Sending positive thoughts your way.
Dear Lighthouse, I do hope you don't have Lupus, too.
We certainly get more than our share, and AI conditions tend to cluster together.
But I would think your rheumy would say something if she got new results. Perhaps she just said 'Lupus' by mistake? Perhaps it's a warning she gives so often she just 'slipped it in'?
I know many of us with Sjogren's are sun sensitive and I think Plaquenil can also make us more sensitive.
But I'm not sure. I don't take it.
When it doubt, ask.
Hugs, Elaine
My old rheum used to talk ab "my joint pain and RA". I had NEVER complained of joint pain and I don't have RA!!! I found a new dr but sometimes I think he was just on autopilot from having seen so many patients.
Don't stress ab having something you don't. We have enuf on our plates! But get clarification as I'm sure you will ;)
lighthouse33 I would give the Dr a call for clarification on Monday.
No sense wondering, and yes, I think we all leave the office and then have a ?? moment.
And sometimes Drs. being human, have a slip, as some of the concerns: SJS/Lupus are so similar. Sun sensitivity.
I take short notes sometimes when the Dr. is talking on my outline..it helps me focus.
(Yes, I take an outline of what I need to talk about to hit the points, symptoms, few questions, etc, Dr. gets one too. So we are basically one the the same page following alone.)
Originally, I was Dx'd with Sjs/Lupus...
When I go to appts I do not wear any makeup so they can 'see' me. Not the "You don't look sick".
I had some capillaries, and odd very small lesions appear near my nose...
I did start using "virgin olive oil" to cleanse, moisturize, and researched the protective natural protective benefits of the oil. Anti-oxidants, refracts specific sun rays, etc. And now the capillaries are normal.
About a year later Lupus was dropped from Dx. Different Dr. Treatment stayed the same.
When I take a shower the redness in the front cheek area shows more.. Drs' monitoring Blood work and exams.
So give the office a call for clarification to ease you mind.
AI conditions tend to overlap from what I have read here and elsewhere.
I have the red butterfly shaped rash on my face on and off. Several visits ago my rheumy told me my blood tests were beginning to show signs of lupus. Then when I asked her two visits later, she said I was not showing signs of lupus. It is all so confusing.
And yes, as Littleone said, I think sometimes the doctors are on "autopilot" from all of the patients they see. And, in their defense, I think it is often hard for them to pinpoint ONE AI disease versus another since the symptoms overlap so much and the blood test results change.
I have sort of given up on getting a definitive diagnosis besides the Sjogren's. I like that doctors are beginning to listen to patients and treat symptoms and signs (rashes, swollen, inflamed, red muscle/tendon areas near joints) instead of demanding positive blood test results. They are still learning and they probably have not yet identified all of the tests needed to diagnose different AI conditions.
I hope you don't have lupus Lighthouse.
Hugs -
LucyD
Hi lighthouse,
The timing of your post is interesting. I myself was speaking with my Family Physician a week ago, and she too said "your Lupus" during our discussion. For me, I just thought she slipped up a bit. I didn't question her because I knew what she meant.
Ask your doc on your next visit to be sure. But I hope you don't have this added burden.
LucyD I couldn't agree more. I often wonder if there isn't just one big AI continuum and we all have features of multiple diseases. I find the overlapping endless and, frankly, the treatments are all the same anyway: steroids, non steroid immunosuppressant, biologics, IVIG - I sometimes wonder why they don't just tell me you have AI Syndrome.
Good luck Lighthouse! And here's to everyone having a healthy day :)
For the past year or so, when i'm in a flare, I've been getting what looks like a butterfly rash, but not as bad as I've seen them. I asked my rheumy if he thought I had Lupus and he said "Probably. It makes no difference in how we're treating you though." As others have said, they are so very similar.
Another thing that I I like to tell people is that AI is AI. I believe that AI is THE disease and the various Dx's are the way that docs can separate and categorize the symptoms. We have a disease where our immune systems attack our healthy tissues. What gives us a Dx is how our immune systems decide to attack us. This is why there are so many overlapping Dx. They're all one. Very much like Autism Spectrum Disorder.
Hope that made sense and didn't confuse things further. Basically, it's much like what Lucy D/littleone are saying.
Peace and blessings,
~Andrea
I was diagnosed with Sjs about 4 years ago based on lip biopsy and symptoms (seronegative) and started taking plaquenil. Two years ago in the spring, I got raised red rash on my arms and a butterfly rash on my face - weird, the shape - butterfly with two round circles below the wing points! Skin biopsy showed a lupus reaction going on. The Dx was changed to lupus with secondary Sjs. I started taking Cellcept (mycophenolate) for those symptoms. (I'm probably also seronegative for lupus)
It seems to me the majority of AI symptoms are similar between the two diseases - if you also have sicca, it's called Sjs. If you also have this sun reaction, it's called lupus. My rheumy said - it depends on whether you're a lumper or a splitter as far as names go. Both diseases seem to have risks of similar complications. I don't really care about the names as long as the symptoms and their progression can be treated. Cellcept helped a lot with both the sun reactions and my general state of being.
Being in the sun makes everything worse including the dryness, so I go to great lengths to avoid it. Even direct sun through glass. But if I stay out of it, and take the cellcept, I'm okay.
I guess from my experience, I would recommend treating for any symptoms you have and maybe worry less about the specific diagnosis? But that's because it has worked for me. Everybody responds differently (as we all know!).
Hi I m a newbie on here....have been seeing my rhematologist for 4 years, they think I have Hughes but he won't be pushed to give a definite prognosis of this, I was told last year that he thinks it is lupus because of my symptoms and started treating me for it, as a precaution he sent me for a lip biopsy which came back positive and I have now been diagnosed with sjorgrens- I wasn't expecting this as 3 months after starting my medication I started having chronic headaches when I went in sunlight, the type that bring you to tears because he decided it definitely wasn't lupus I stopped talking my medication in case that was causing the sunlight intolerance....I ve been waiting 6 months for my appointment as it was cancelled repeatedly....since then I have developed sickness and dizziness within a few minutes if being outside and a purple red rash across my face if the sun is out.
I also cannot spend more than 5 minutes under artificial light as that causes a Hemaplegic attacks where I cannot speak or communicate, which can last days and the bruised feeling and pain lady for weeks... So at the moment I m a bit confused as to why the sudden sunlight rash and what I have exactly....if anyone can help I would appreciate any advice!
I have lupus and Sjogren's. With lupus, I get more than just the malar rash. For example, I didn't apply enough sunscreen on my chest and was wearing a v-neck t-shirt at Disney World in early March. I STILL have the follicular rash that resulted from sun exposure on my upper chest. My rheumy said it's a very characteristic photosensitive skin rash.
I really hope you don't have lupus as well. Regardless, it's a good idea to take extra precautions in the sun anyway!
I always apply factor 50 sunblock daily even if it's raining and the doctor told me to cover myself up and carry a black umbrella around- which seams ridiculous...but after 5 mins I get a mild burning and tight sensation on my skin and it's goes purple/red. I think half the worry is not knowing what's going on or why....and if it's sunny I m self medicating with anti sickness tablets as my gps don't gave a clue what to do with me!
Lighthouse33:
""With lupus, we see all kinds of weird skin rashes in the summer from the sun, be sure to wear sunscreen."
I didn't really think about it at the time, but am now wondering if I have lupus in addition to the Sjogren's.
A couple of years ago, I asked if all I had was Sjogren's and she said yes. Guess, I will ask at my next appointment in six months."
-------------------------------------------------
It is possible that your Rheumatologist said Lupus and meant Sjogren's. Anyone can be make a tongue slip like that. As we know, Sjogren's and Lupus can each have their own skin rashes. So I think the Rheumatologist are always on the look out for Sjogren's rashes with us. However, they are probably also on the look out for other rashes that may alert them to another AI showing its ugly face.
Since I was first diagnosed with Sjogren's last August, my Rhematologist has repeated at every visit to be sure to wear sun screen all of the time when I am outside. (We go over everything I am doing for all of my symptoms at every visit.) She does know I am sun sensitive.
I have a lot of odd ball rashes and skin issues (a;; over the place) and I am 100% sure they are AI related. I have had several skin biopsies over the past 2 years which have variously showed Psoriassis, Connective Tissue Disease, allergic reaction, and other stuff. Most recently we have been watching various skin rashes/issues. During the last visit she said that the rash on my arms (generalized splotchy erythema) is often seen in Lupus. She did not say I have Lupus, just that that type of rash is often seen in Lupus. She wants me to see s Dermatologist who specializes in Autoimmune Disorder rashes and skin issues.
I do have an appt. to see him. My other Dermatologist who did the biopsies knows the rashes are connective tissue related but does not know which AI. Sp I need a specialist in AI and Derm.
I also have other skin issues as well as a very faint rash on my cheeks and nose bridge. I have had that cheek rash for years, very faint, most people do not notice it.
I am aware that there are 3 types of Lupus (Discoid, Cutaneous, and Systemic). One can have one of them without the others.
So, while it is possible your Rheumatologist meant Sjogren's when she said Lupus, it is also possible that she is concerned (in the back of her mind) that you could potentially have some type of Lupus which is causing your skin problems.
Can you send her a message and ask her what she meant? If she responded and explained what she meant, it may help to ease your mind.
I wonder this also, my rheumy flips back and forth on the lupus though so I dont know. I assume I dont because I can go out in the sun and stand around with no sunscreen on and just get a tan or a slight reddening. I dont get sick from the light, but I get heatsick from the heat very fast. To me I thought if you had lupus the sun would make you rash and get sick. I think I get heatsick from some kind of temperature disregulation maybe related to sjs or poss sclero. My body temps range from 95.9 to 97.6, I havent had a so called normal temp in at least 2 years.
Also if you have lupus and you put your face to the sun dont you get the butterfly rash? My face gets reddish but its pretty uniform, I just consider it a slight sunburn.
I tested positive for both Sjogren's and Lupus. But because of my extreme dryness my Rheumy says I had primary Sjogren's. Later he said since both were treated pretty much the same he only diagnosed one. So I have taken that to mean that I have both. I have symptoms of both. I'm very sun sensitive and do develop a rash if I don't have enough sunscreen on and have Chronic Kidney Disease which means lupus and all the dryness associated with Sjogren's. I've finally come to the conclusion that it doesn't really matter which ones I have since if you have one you usually have other Autoimmune illness.