Before I was diagnosed with lupus sle, I would get these horrible large cysts around my chin that were very deep and painful. After being on plaquenil, I noticed a steady decrease in activity to where I rarely had a cyst appear.
About 4 months ago, my new rheumy decided it was time to cut my dosage of plaquenil in half. Slowly those nasty cysts are reappearing and I just now found a lump in my breast. I'm scheduled for a diagnostic mammogram next week. Anyone else have issues that are similar? Thanks! and Hugs!
I get them on my scalp and I have to wear UV protective head covers during prolong times out in the sun. With Lupus we have to guard ourselves against the Suns rays at all cost, the rays play havoc on our health. You should limit your time out in direct sun light to no more than 1 or 2 at a time and wear sun block all over your body and I mean everywhere the sun may reach.
Were they like cystic acne? I used to get some of that, also chin area. Or at least that’s what I thought… I never had acne as a teen when I was on estrogen birth control, then when I went off it at 21 it was a bummer to then contend with it at an age where most people’s fades away! I can’t remember how much of it I was having before starting lithium for bipolar symptoms (also better with treatment for SLE), which is known to cause more hormonal pattern (chin area) acne and pore enlargement.) Even the smaller pimples were very inflamed and would leave purplish scars when healing. Now even the scars are fading, which they were not before. And I can’t remember the last time I had a large, painful cyst there.
I did also used to get things on my scalp, especially as a kid, that I’d pick at and they’d ooze and crust (sorry, pleasant image I know…) but as they were under my thick hair (and usually at the back of my head) I couldn’t see much. I haven’t had any in the last 2 yrs since starting treatment, just one remaining (permanent it seems) lump that feels smoother (scar?), at the location I most often had the scratchy-oozy things. My terrible problem of ingrown hairs, while it still occurs, doesn’t result in as much inflammation (though still significant.)
Overall, my assessment is that the reduction in inflammatory response accounts for the change. With as be, which is less often and more minor, one of the main differences is that there will be clogged pores or even infected-looking whiteheads without so much of the hard, red inflammation (that said, there is one of those on my mid inner thigh right now…) I’ve heard that a big part of acne problems is the inflammatory response. To me, the fact that the most effective acne relief cleansing agent is salicylic acid (close cousin of aspirin) is telling… So, that’s my experience and cursory guesses about an explanation.
On another note, why on earth would your they my want to lower your plaquenil? Were you over the normal dose? Should be around 300-400mg, and is tied to body weight. I take 200 because I couldn’t tolerate the side effects at my recommended dose of 300, and at 200 with my combo of other meds I’m doing well. Maybe with more plaquenil I’d need less of that tiny bit of steroids I’m still on (5mg prednisone equivalent) that I can’t seem to taper down from at a reasonable pace! I started tapering from 20mg/day pred equiv a little shy of a year ago, and had been on that higher dose steadily for 4 months leading up to treatment with Rituxan. Plaquenil did almost nothing for me when used alone, but I bear in mind it prevents flare recurrences and has subtler effects than the big ones (like Rituxan) and the quick ones (steroids.) In any case, seems weird to drop down, except for worrying about your eyes. Is that the concern?
I get nodules ....harder than cyst all over my body. In fact it was one way they help to diagnose which autoimmune disease i have by pathology reports on them. When i am very active i get either new one or they grow ...or both things happen and they hurt while growing.
I did have one in my breast about a good 2 inches long once surgeon pulled it out and showed me...since i seen others he asked if it looked similar. Yes, they still cut a large area around just in case it was cancer but so far it has not.
IF it is cyst they should be able to do need aspirations on one in breast as well as on your chin to find out the cause of them and what their make up is. You might ask about doing this as needle will not leave any scars. My tend to come in where lupus attacks in connective tissue areas of our bodies...between skin and muscles etc.
in fact why i originally went in to doctor in the 80's was i noticed small lump size of pea on my arm above elbow. In less than month i was size of quarter so knew that was not good. So did my doctor who i got by chance going in to urgent care on day off. She was /is one of the best doctors i have ever known. Whom ever threw us together was clearly an angel because i think without her skills as internist i could have gone years with them bouncing back from cancer to auto immune or unknown...she noticed my butterfly rash more than once when i had to drive half hour down to her office in my car...this was back when many doctor did not believe in lupus same as fibro now. You would not believe the number of doctors if i went into random one for sore throat that said..there is no such thing as lupus lol!
So i hope you get needle aspiration first...if they are calling them cyst that normally means they can tell fluid is in them and so they needle can be used. Mine are hard and i have had many removed...only to have most come right back so they finally stopped. I do know that others have nodules like i do too.
I hope you are wearing hats and sunscreen because as one person states about sun can cause cysts she is very right...plus allergies to things. Every lupus person should just get in habit of wearing hats...not visors but sun protecting hats with brims..at least 3 inches. Even indoors if they have fluorescent lights. And sun screen....you must reapply it during day if you are outside. Plus if it is sun, sierra traders...you can find them online has sun protection clothing at some very decent prices as well as hats.
The fact it seems to be responding to plaquenil well that is good thing...you might ask your doctor to add folic acid plus you get evening of primrose oil capsules to take as well. They both are very good for lupus.
good luck....i really hope it is nothing but another cyst on mammogram too!!
Thanks friends for the input. As a matter of fact, in the past month, I have driven a total of 36 hours to and from KC moving my daughter. With sunglasses on, my chin area would have been in the sun a good deal of the time.
Before I was diagnosed with lupus, the dermatologist diagnosed me with acne vulgaris. But, we could never find anything that helped in any way. About 6 months after I was on the full dose of plaquenil, I noticed that I was no longer getting the large hard knots under my skin in my chin. So, when these started showing back up months after dropping it in half, it seemed interesting to me.
Brynn, My first rheumy that had all the original blood work diagnosed me with the lupus SLE. I had to change doctors after almost 2 years because of insurance stuff. My new rheumy did all new blood work and diagnosed me from the new data. All tests were normal, so he said that if it weren't for the fact that I had been previously diagnosed with lupus, he would not diagnose me with it. So, he diagnosed it as inactive lupus, and wanted to drop the plaquenil in stages to see how I would do. All I know is these things really hurt mentally and physically. I don't want to go anywhere because I feel bad and feel I look scary. In some ways, I wanted to get sick enough that the numbers would come back up to prove to him that I am sick with something and that it isn't all in my head, even though I'm pretty sure he doesn't think that. Why does lupus have to be so hard to diagnose?! argh....
I'll probably have some idea about the breast cyst on wednesday afternoon. Thanks again!
I would get these when I was in my 30s, I just thought it was part of acne. But nothing I used otc would help, and I have scars on my jaw line from them. I just thought it was stress, because I hated the job I was in at the time - looking back, I've had so many symptoms and signs of Lupus when I was younger. I have a bump on my left shoulder right now, where I put my purse over of course - its not growing it feels more like a bone spur? Why there, and why now?
I've got 4 deep cysts on my chin right now that will get bigger, then smaller, but never come to the surface. And the on that did come to the surface is taking forever to go away. I am under a bit of stress, so that could be one of the reasons. I have a feeling that due to lupus, my body freaks out about anything that shouldn't be there and causes that inflammation.
It doesn't seem fair to have acne on my chin at 51. I saw a commercial with Tina Fey where she says she has the chin of a teenager. hahaha
Unfortunately, it's going to be stressful for a while. I have to get a biopsy on Monday, wait for results while dealing with a cardiologist for heart issues. Plus, my mom who is 82 is in a rehab home recovering from hip surgery, but she has dementia and it seems to be getting worse. It's a good thing there isn't a decent donut shop nearby. ; )