Question about scalp rash

Thank you all for such a warm welcome. I’ve posted questions on other boards but frequently don’t get a reply…guess I’m not part of the popular crowd! LOL

I’ll give you a brief history before I ask my question. My official dx is Psoriatic Arthritis and ITP, and I have a positive ANA (I have other dx too but not that fits the official criteria). I have a lot of Lupus symptoms and my pcp has suspected Lupus for a long time. I have 3 criteria which have developed over a period of 20 years! About 5 years ago I was told I don’t have “full blown” Lupus yet (and no I don’t know what that means!! LOL).
I have had a rash on my scalp for 15 years and have always assumed it was Psoriasis. I went to a dermatologist when I first got it and it was coming and going so of course when I went to the derm it was fairly clear. He couldn’t determine what it was but assumed is was Psoriasis since I had already been dx with psoriatic arthritis (which is very rare in the absence of psoriasis) and I had a family history of it. It got progressively worse over the years.
Thank you for your time! Warning: this part is kind of gross!! About a month ago it began to ooze a clear fluid and was very raw (no bleeding though). It had also spread down past my hairline a bit on my forehead. It’s lots of small sores about the size of a pencil eraser. This “ooze” dried up and peeled off in pieces (biggest was about the size of quarter) but the hair didn’t come off with it. It has returned to it’s normal state but I now have a scar where it came out of my hairline on my forehead. Pencil eraser size, raised and rough. In my experience, psoriasis doesn’t do that and doesn’t scar. Does this sound like a Lupus rash?

Apparently I can’t use an iPhone either…the thank you should have been at the end not in the middle! Sorry!! 

Sounds like Discoid to me, have u mentioned that? Cause my Mom had it & it DID scar badly…Where else is affected on ur body? Suzie :0)

Just my scalp! No other rashes anywhere other then petechia which is related to the ITP. I looked at some Lupus rash photos and all I could find looked like red circles with pinkish centers. I know the photos are worst cases but this didn’t resemble those at all.

Although I’ve had the rash for years you couldn’t see it through my hair. This was red and scaly, raised and about the size of a pencil eraser. Some of the ones I can’t see feel bigger and have periodically been very flakey (white flakes like dandruff) but they are raised and sore when touched. They also had always been dry up until this episode a month ago.

Suzie D. said:

Sounds like Discoid to me, have u mentioned that? Cause my Mom had it & it DID scar badly…Where else is affected on ur body? Suzie :0)

wow...idk much about the rash array but it sure sounds painful and troublesome. I don't know why docs have such a hard time stepping up to the plate and calling a beast a beast. Why they have to kitty step around is beyond me. But I am so glad you are asking questions in here...and at doc's visits.

please keep posting about what happens.

When it comes to posting I kind of feel like we are a big family gathering around a big table and everyone is so glad to see evreyone else and everyone wants to hear what you've been doing and tell their own stories too.

So it works best when you just jump right in---there is always going to be someone who is blessed because you did.

My Lupus is only triggered by reflected light (photosensitive) therefore have to be very careful in the sun. I get a very itchy scalp which seems to spread to inside my ears, behind my ears and affects my chest, back, arms and face. The rash makes my skin very tight, hot, shiny and itchy, Dr prescribes Betnavate and Eumovate hydrocortisone creams and has suggested I use a factor 50+ sun cream all year round. The rash does leave white scars which of course are more prominent if a "sun tan" happens. (this would only happen if I was caught out for a long period of time with no sun protection), Sorry for being boring but on a brighter note I have not had an active outbreak for nearly two years - so whatever Im doing - it must be right lol

Liz xx

Thank you all for your replies! I have a new doctor who I don’t really care for. I try to avoid going if at all possible but I’ve got to go get a refill for my Arthrotec. I’m not really comfortable talking to him about anything because he tends to focus on one thing and glaze over the rest.

Hi Roni! Then my advice personally to u is to find a doctor that you are 100% comfortable talking with, because good communication between the 2 of u is vital in the treatment for this! Do not settle, there are many more out there! I wish you the Best of Luck & wish you well! Suzie :0)

Roni said:

Thank you all for your replies! I have a new doctor who I don't really care for. I try to avoid going if at all possible but I've got to go get a refill for my Arthrotec. I'm not really comfortable talking to him about anything because he tends to focus on one thing and glaze over the rest.

Unfortunately, we have a doctor shortage here so it’s not that simple to go to a new one. My previous doctor passed away and this one took over the practice. When this first happened I had an opportunity to switch and didn’t… Now I wish I had. There are alot of people here that don’t have doctors…my parents doctor just retired so they are trying to get one. I also have a friend with Severe MS who doesn’t have one for herself, hubby and two boys. The worst part for her is that she can’t even get pain meds at the clinic, and the emergency dept will on perscribe them for very short terms (not so great with severe chronic pain). So as you can imagine it’s difficult to switch.

Suzie D. said:

Hi Roni! Then my advice personally to u is to find a doctor that you are 100% comfortable talking with, because good communication between the 2 of u is vital in the treatment for this! Do not settle, there are many more out there! I wish you the Best of Luck & wish you well! Suzie :0)

Roni said:
Thank you all for your replies! I have a new doctor who I don’t really care for. I try to avoid going if at all possible but I’ve got to go get a refill for my Arthrotec. I’m not really comfortable talking to him about anything because he tends to focus on one thing and glaze over the rest.

I know what you mean about good docs being few and far between. Sometimes I have to pick the lesser of the collective "evil"

That is one thing I want to see change... the attitude of hostility between us and them.

the health care climate seems to have become pretty hostile and i don't know who or what is to blame. maybe it is insurance co or maybe it is lawsuit happy people...or both or who know what, but no matter what caused the hostility between health care workers and patients, it is hurting all of us.

We should not have to fight as hard as we do to be treated with dignity and respect and "they" should not feel like they have to live in seclusion, always defensive for fear of being sued.

whew. sorry about the soap box speech. but this topic is one that i really care about. I will talk more about it in the next blog---it is bubbling to the surface. Thank you for the cathartic nudge.

See how it is...? We never know what we are going to say that is going to create a healing-space in another person. When you said you didn't have many docs to choose from I bet you didn't know that those words would cause such a stir in me that stuff I have been too stunned to express for 30 years is being dislodged. Healing happens when we share our stuff in such an honest way. Thank you so much

I am sorry bout that Roni, I am kinda in the same unfortunate circumstance as u are though...I used to have my pick of the litter so to speak of Docs when we had private health ins., after we couldn't afford to keep it, w/ fam. of 5 it was going UP & UP, so my kids hae NJ fam Care, Thank God, but they will no accept adults over 18, doesn't do me & my hubby any good, :( So we now have Charity Care at a hospital by us, where I can go to the Adult Med. Clinic, there is a Nurse Practitioner who takes care of us, she is so nice, but also is limited in what she can do, she can send us to "medically deemed" necessary specialists in THAT hospital, as she did with my current Cardiologist fro my heart problems & high BP, but there is NO Rheumy in the hospital, and that is who I need to treat this "Mysterious Autimmune illness" I suffer with everyday! My skin isn't a problem, so I can't even go to a Dermatologist which they do have there! So I have to go thru THE WHOLE BALL GAME again, of getting Charity Care thu a hospital further from us who as a Rheumatologist I can see, but, I was sent for hand xrays & lumbar spine xrays by the clinic, and bloodwork was done too, which is good, cause at least I can go w/ some tests done already, but it just stinks cause after I do get the charity care then I will prob. have to wait 2-3 monts or an appt. since Rheumys are PACKED with patients, HMM, wonder y? LOL...Maybe cause we are in an epidemic type problem & noone realizes it! SO That is my next move, and I therefore suffer till then,, so I am with you 100% with the docotr issue, so sorry you are having the same issue by you.... I only advised u cause I feel if u are not happy w/ th doc u are seeing then move on till u are happy, I do the same I have been the past 15 yrs or so, to many many docs! But I moved too, so that is y I stopped going to them too...This disease is so mysterious I personally believe the docs r BAFFLED as much, if not MORE than us! It sounds to me u may be having Discoid Lupus issues as u have described, discoid & psoriasis is so closely related with the symptoms, almost mirror like. So u need a biopsy of the affected skn unfortunatley to get the correct diagnosis, my Mom did & that is what showed the lupus cells, never a Pos. ANA for he, but she did have elevated Sed Rate and maybe some other antibodies too, but I was so young, I am not 100% sure! Although to be honest my Mom always went to a Dermatologist to treat the Discoid, so u have tried that too right? She also had joint pain, I remeber her fingers, resembled sausages, she had short stubby hands to begin with, she was a cute lil Italian woman,LOL, but they (her fingers) did swell and hurt her. Hell, I think she hurt more than she let anyone know. She was like SUPERMOM, really, she never stopped, whatta woman & MOM overall! THE BEST! :) xoxo I miss her more everyday she is gone, the older I get, the sicker I feel, the harder it becomes, cause I have so many questions I want to ask her. Nothing is like a Good Momma! And sadly u do not realize that till u lose them...U love them, but don't realize the vital importance they have in ur life! I was 14 wen she died (it was all from complications of Lupus mixed with combos of toxic meds, mixed together, that they do not even use toay it was sudden, she passed over a 2 month period, from getting BADLY ILL) she became vain cause pple stared at her, from her scarring, on hr arms & face & hair (she wore longsleeves during summer cause of it) so she took whatever they offered her, She became their guinea pig & suffered the worst consequence due to that! So, do not be a Guinea Pig, research what u can, be a big part of ur treatment, ask questions! OK,well that was a long reply, and see last night u thought you weren't part of the crowd here, well, now u are prob. like OK, enough talking, LOL!!! Hope all goes well & I will pray you find someone to listen to you help you & you are also comfortable with.....Good Luck! Fingers Crossed 4 ya! {{HUGS}} Suzie :0)

Suzie, you have such a bright and light spirit I forget all the hard stuff you have been through. I can't help crying a little as I see my capt'n being so honest in order to help a new warrior prepare to fight.

You are the best

we need a lupus warrior's motto to say like the marine's who say "semper fi"

Let's think of one.

I’m in Canada so our medical system is a little different. For one…there are no lawsuits! If a doctor is negligent they go before a board and can lose their license. We also don’t pay for medical care. However the doctors pay is determined by the government so they tend to get paid better in the US, so we have a shortage. Now I’m not complaining…if someone has a life threatening situation you are cared for very very well and don’t have a huge bill when your done. No one has to ponder the value of a surgery that they need. So there is a lot of good in our system.

I don’t think my doctor is bad per say, I think I just don’t communicate really well with him. He just seems to focus on the trivial stuff. Example: I was running low grade fevers for about a month. He sent me for blood work. ESR was high, platelets were low. To me this indicated some disease activity maybe it’s a good time to do further testing…he says no it’s just from the arthritis but then acts all concerned because my cholesterol level was at the higher end of the normal range. Does that even make sense? I just don’t think he knows how to deal with chronic illness (he was an ER doctor previously).

So sorry about your mom! I am blessed in that my mom lives right next door to me! I am able to help her out and once in a while she sends over beef stew with biscuits just because she "saw you weren't feeling well" (my favorite meal from childhood). I have a lot of great things in my life and wish that everyone struggling through this horrible disease with the same level of support that I have! 