View Full Version : That was short-lived (or, It's the Rash, It's the Rash, oh, the Rash is Back)
07-15-2012, 08:33 AM
So, I am still new to autoimmune disease, so each new thing that happens, I get all, "Ooh, does this happen to everyone?" Thank goodness for WHL-- where I can actually satisfy my curiosity.
So, my major symptoms have been leg pain (muscle pain? we don't know) and a funny little rash that visually looks like urticaria or ringworm (raised reddish splotches that grow outward and resolve from the center) but histopathologically looks like lupus or dermatomyositis.
About two months ago, I started Plaquenil, and have been thrilled to have my rash go away and my leg pain to fade (though I still need NSAIDs and tramadol, just not as much). Energy level went up. Yay!
But, the past week, I noticed one little skin lesion pop up. No big deal, right? Wrong. This morning, there are half a dozen more. And yesterday, I take my dog on a walk and find myself barely a mile out before I'm just dragging-- aching, exhausted, walking funny. I shuffle awkwardly home and crash on the couch and actually fall asleep for a couple hours. I never sleep during the day. Barely could force myself to get up to eat some dinner.
tl;dr version -- Plaquenil made my symptoms go away, and now they're coming back.
Now to my question: is this pretty normal? To still have occasional flare-ups of symptoms despite being on Plaquenil? I was -- perhaps naively -- thinking that my rash and leg problems were being quite effectively controlled by Plaquenil. I wasn't expecting to have problems come back just a few months later. I thought Plaquenil would just keep it under control. What gives?
07-15-2012, 09:13 AM
Things we do in our life can also influence our health. Such as how much sun you took in, if you're around unfiltered flourescent lighting much, what you eat or drink (for some of us), etc. So it might be that something you did or didn't do over the last week or so. Stress can also influence a lupie, and for me, I have to admit, in a *big* way. For me, allergens are big also, since if the pollen count for certain things get up (or dust), and I react to that, my lungs swell, I go into an asthmatic reaction, and my lupus flairs, which is stressful, and starts the cycle... For a while there, I was keeping a "diary" of things I ate, did, etc. through the day (what a *bother* that was), in an attempt to figure out if I was eating/doing something to caused my varied flares. There wasn't any one or two things that stood out, so "it just happens" was decided. I call the doctor's office when I start having what feels like a flare, and they'll usually bump up my prednisone. My new rheumy is doing me on plaq now, and we hope to eliminate prednisone, and just use it when needed.
Have you seen some of the other posts, where folks talk about their dose of plaquenil? I'm a guy, 6'2" tall, and I'm on 400 a day, 2 in the morning, 2 in the evening. Other folks are smaller, and are on 200 a day. btw, I used to eat ibuprofen like candy. There's a little mention in the plaq hand-out that mentions being careful with certain otc meds. Not that there's any imminent danger involved with them, just that some folks have issues, especially in high dose (which I was doing). Of course, that applies for most any med. I can't find the paper right now (naturally)...
07-15-2012, 10:36 AM
Sometimes plaquenil is not enough to control the disease - then you have to look to other meds in addition. Or you and your doc might decide that dealing with small flares is better than the meds - everyone is different. Record your symptoms, and talk to your doc. Also, like jmail said, try to notice things that trigger illness - whether it's sun, stress, certain foods, a few nights of bad sleep, etc. It might take you a while to discern patterns, but it's worth it.
Also keep in mind that plaquenil can take up to 6 months to completely work so don't give up yet. As was mentioned above, the doctor may add a small dose of steroids to get you over the hump but it is important to keep in communication with your doctor.
Although I can't see the rash and I am no doctor it almost sounds like a discoid rash. Often times those need a steroid cream to be dealt with until the meds really get in your system. Hope you feel better soon!
07-15-2012, 04:25 PM
As always, WHL provides with a variety of useful posts. I think the take-home message here is that (a) I need to be patient, and (b) there is no such thing as a magic pill that will cure all my ills and send everything back to normal. So it goes.
@jmail-- A diary for tracking symptoms in relation to the rest of my life is a fantastic idea! I did spend a lot of yesterday out in the unforgiving sun, but my rash is not a photosensitive one-- bizarrely enough, I only get it on parts of my body that never see the sun, like my torso and upper legs. Can sunlight negatively impact people who don't have photosensitive rashes? Oh, and regarding height and Plaquenil, yes, I started that post after meeting with my ophthalmologist, so I should be on the right dose for my somewhat diminutive height.
@Sleepy-- So far, my disease is pretty mild, so my rheumatologist and I decided to avoid the bigger guns for now. But I will keep track of potential triggers. I'm paranoid that stress may be a trigger, which doesn't bode well for me. My job is pretty humane as far as lawyering goes, but I work weekends pretty regularly, and there's always some looming deadlines. Mmph.
@tgal-- Thank you for the reminder about six months. My rheumatologist reminded me of that, too, recently. I think I saw a measure of improvement, and I got impatient and probably unrealistic-- I wanted complete reversal and a return to my 100% immediately.
The rash is the least of my worries, though, as it doesn't itch or bug me, and it sticks to areas that are covered by clothes anyway. Its significance seems to be that it comes along with an increase in the intensity of the other symptoms. The rash is the part of whatever-I-have that has enthralled the doctors the most, actually. The dermatologist and rheumatologist thought it looked like the rash people with Hypocomplementemic Urticarial Vasculitis Syndrome (HUVS) have -- and I do have hypocomplementemia -- but on biopsy, it didn't look like HUVS (which would show blood vessel damage), but like lupus or dermatomyositis (marked vacuolar interface change), but then immunofluorescence was negative, which is highly unlikely in lupus but possible in DM. But visually, my rash doesn't look like a DM rash or SLE, SCLE, or DLE rash.
The final word was, "We have no idea what this rash is, but it supports you going on Plaquenil, so let's call this UCTD even though you don't have a positive ANA, and you start taking Plaquenil." I'm at peace about not knowing what my disease actually is now that I'm taking something that seems to be controlling it. I think my rheumatologist is more worked up about it than I am at this point-- he told me the other day he's taken to presenting my case at rheumatology conferences.
I would seriously love to meet someone who has my symptoms or a doctor who has treated someone with similar symptoms. Having my own personal autoimmune disease -- Derrie Syndrome? -- is pretty frustrating.
(Sorry for the ramble. I started off trying to explain my rash and just, well, wandered.)
Welcome to the world of AI Diseases. It often takes months or years to get a firm diagnosis because there really isn't a test for them. We often live in the world of illness and limbo for long periods of time and even when they figure it out they just start treating all the different symptoms (not counting the immune suppressant drugs). We are here for you as you travel this path. Cent away. We get it
I can't really add much to what's already been said, other than confirming what others have said. I get flares even though I'm on 400mg of plaq, and other meds each day. I get the raised rash, and the lead blanket fatigue as the first signs of a flare. For me, stress, and sun are two sure fire triggers.
Even the simplest of tasks can seem like climbing Everest. I shuffle around like I'm on autopilot. I often wonder if this is it. Is this all life really is for me. The physical pain, the emotional pain, it's easy to lose hope.
07-16-2012, 08:09 AM
Rob, you almost perfectly summed up how I feel. I try to keep a good attitude, but after feeling pretty close to normal for the first time in a year, it has been upsetting to feel crappy again. I actually started crying on my walk to work today from the leg pain. The tears were partially because of the pain, but also because I felt a wave of hopelessness wash over me. This is my life? Most of my friends -- who live far away from me; I moved recently for a job -- are posting photos on facebook of their weddings, their new babies, their travel to exotic locales, and on and on. And I am struggling to walk to work. And I don't have the energy to get out and date. And my doctors have said that this isn't going away, but that we can try to manage it.
So, what is "manage"? Ugh. Frustrating!
I can be positive most of the time -- that's just how I am -- but sometimes the weight of chronic, incurable illness is a pretty heavy burden.
07-17-2012, 09:51 PM
I read your description of your rash with interest. Your "patches" sound much like mine. They begin looking sort of like little blood blisters, some tiny and others that grow to be a good-sized sore. After they have been there a bit, they have white "flakes". Sometimes one or two will get really bad and stay for a while. Eventually, they heal and fade, leaving a bit of a shadow of a mark in the skin. Like you, mine will often appear "where the sun don't shine" - on my arms, my trunk and my inner thigh.
I started noticing these back in '98 - about the same time that I was diagnosed with Meniere's. The PCP that I had at the time wasn't very interested in the sores, but I bugged her until she took one for a biopsy. She freaked out when the results came back because they found T-cells. She decided that it was Lympomatoid Papillosus. She didn't want to do anything but keep an eye on it in case it ever became Lymphoma. She wouldn't send me to a dermatologist. I later figured out why. The group that she practiced with was a "wellness group" and had a contract with my insurance. The group got more money if they handled patients "in-house", so they tried to avoid referrals to specialists. I was lucky when that group lost its contract with my insurance. My hubby found a new PCP for us who dug right in, ordered tests and started referring me to specialists That's when I got the AI diagnosis and we assumed that the sores were yet another symptom of that.
I noticed that my skin issues (the sores and the scalp psoriasis) went away totally when I was on the combo of Plaquenil and MTX. Now I'm on Plaquenil alone, and it keeps the skin symptoms at a mild level. I still get the sores, but they fade fairly quickly and rarely get really bad.
No doc has ever told me what those sores really are. Since they flake, I'm wondering if they are related to the psoriasis.
Like you, I also have a lot of muscle problems. My tight, hyper-tonic, spasming leg muscles are actually my worst symptoms. I could deal with all of the other stuff if I could just walk like a normal person. I depend upon my cane and my service dog.
If you get some answers from your docs, please pass them on to me. I'm still trying to figure it out, too.
07-18-2012, 06:08 AM
I'll definitely keep you updated! And thanks for telling me about your own skin issues. I figure I'm going to just stay on Plaquenil for at least six months before worrying too much. My rheumatologist mentioned methotrexate as the next drug to try, but I have heard enough about the side-effects to be wary. And on the up side, I've noticed that this outbreak of my lesions is milder than in the past: lesions are smaller and resolving faster than in the past.
It's the leg muscle issue that's just infuriating-- like with you. I can still walk, just a little awkwardly as the pain increases. I also have myoclonus (random, uncontrolled muscle jerks) that is pretty mild and possibly linked to medications I've taken (it started when I was taking Lyrica, then faded, but now that I am on tramadol, the myoclonus is back; and it gets very bad if I take Vicodin, so I only ever tried that once!). Anyway, rambling, yes, the muscle issues are the most frustrating. What I wouldn't give to have my normal legs back!
PS - And that is not cool about your health group and the insurance contract! This is an example of why we all need to be so vigilant about our healthcare and health coverage. My HR department thought I was sort of weird when I asked for a copy of our actual insurance contract, not just the summary of benefits available on our intra-net. I like to know exactly what I am dealing with.