One month without using steroids! Let me recap and just give a little bit of my brief steroid history, because if what I’m going through is TSW (and I think it is), I wasn’t a long-term nor hugely habitual steroid user, so my pattern of healing may be different (quicker? I hope!) than some of the other personal accounts online. In a following post I’m going to put up some pictures that will give a better visual demonstration of this.
I first remember being prescribed steroids around age 19-20 when I had some eyelid dermatitis/eczema. I had always had somewhat sensitive skin and had eczema as a child on my limbs, but it was never treated with steroids at that time as it was moderate to mild. I’m not sure what caused it, but it could have been a makeup allergy… anything really. I was given Desonide compounded into a cream ‘safe’ to use around the eyes and I used it for probably a few weeks – my memory is fuzzy at this point.
The next few years I don’t remember very well, steroid-wise, but I wasn’t in too bad of shape as I don’t remember being hyper-focused on my skin’s state like I am now. Somewhere along the way I must have had some itchy patches though, as I was introduced to Protopic (not a steroid in the sense of the others) and Mometasone. I used these here and there sporadically – I habitually had red, rashy skin under my nose, so I would sometimes use a dab of them here. In retrospect, I think the red skin was probably from perioral dermatitis and using some lip product like chapsticks with beeswax.
In the winter of 2011-2012, I had an annoying patchy face rash going on. I was getting very self-conscious and desperate to heal it. I had used CeraVe cream to try and make it better and it seemed to only make it worse. However, this could have been a case of trying so many things to try and heal my skin, as it had been slowly and insidiously spreading and getting rashy after starting with a tiny patch under my left eye that refused to resolve. The insidiousness also began with me noticing my skin was getting very sensitive and I couldn’t use products I once used, like Aveeno moisturizers. Around this time, I remember being prescribed a new cream, Elidel (which didn’t seem to do anything for me and was very expensive).
Over the following months, my rashes were in a state of flux, sometimes okay, sometimes not so okay. Again in retrospect, this could have been linked to using products with aloe, as I found out I was allergic (or perhaps I was NOT initially allergic to aloe, but developed an allergy from using it over time). I don’t believe that I really used steroids during this time, except for maybe a tiny bit here and there under my nose again.
Over last summer I started getting really fed up. I had these patchy rashes on my face and no matter WHAT I did, they would not go away. Sometimes they would improve and sometimes not, but they were stubborn bastards. I was starting to avoid people so I wouldn’t have to look them in the eye and have them notice my rashes. My legs were also starting to get rashy in late summer. I wanted to wear shorts around people, but I was self-conscious about it. In a fit of desperation one day, I put Mometasone all over them – and woke up the next day with clear skin. Scary how well, yet how terribly these drugs work. I think I repeated that cycle with putting Mometasone on my legs one other time. I had also had a round itchy patch on my knee that wouldn’t heal, and I used Mometasone on that. Strangely, it only got worse and larger (from about the size of a quarter to the size of maybe a pop can diameter). Maybe that should have been my first clue. In September I saw a naturopath and her remedy also made things worse – I had horrible puffy eyes and red skin.
This started a cycle where, although I wanted to avoid steroid creams, I used Desonide on my face sporadically if things got really bad, as a last resort. It did seem to improve things, but not too much. I began seeing a holistic doctor, who thought the cause was my liver or thyroid and had me buy all kinds of supplements that did not end up helping and were a waste of money, in my opinion.
Then in November I had the whole aloe allergy thing. The dermatologist took one look at me and prescribed Mometasone again, but this time to use on my face, and then Protopic to use once most of the rash had cleared up. I used the Mometasone for about 4-5 days and then the Protopic sparingly. Over the next few months, although I KNEW it was bad to use the Mometasone on my face, I did use it a handful of times – one time I had a random rash act up under my eye, and the most recent time my face got completely red and dry when I was sick with a cold and bronchitis. I also started to have rashes crop up on my body, like on my stomach and back. My legs looked wrecked all the time and I had given up on them. I used a little bit of Mometasone to heal my body rashes and I thought maybe it really worked for good, but the rashes came right back after about a week of not using the cream. The very last time I touched steroids was in January where I used Mometasone on my face for one day when I was sick and I got very red and dry.
Pretty much just a few days after using the Mometasone for the last time, my skin got even worse (this was last month). This was also the time that i started the Candida Diet in another attempt to heal myself as it made sense to me that I might have Candida (had used antibiotics and birth control in the past, both contributors). The first/second day of the Candida Diet (where I was eating only vegetables and broth), my face got even redder and my eyes were puffy. This seemed to either be a ‘rebound reaction’ from using then stopping the steroid, or some kind of detoxing from the Candida diet, or both. I read a very interesting post the other day from Eczemancipated re: diet and RSS/TSW which may have explained what happened to me. I had done the Candida diet for about three weeks and didn’t notice any skin improvement (in fact, worsening), although I FELT really good internally, albeit sometimes deprived and hungry. Diet-wise, because I didn’t see any improvement and because now I recently am under the stressful change of living with my parents and undergoing separation with my husband, I kind of scrapped the true Candida diet. I can’t cook as many special foods when I’m sharing a small kitchen and fridge with my parents, and the stress caused me to turn to comfort foods like toast and cookies because the stability of my living situation got abruptly uprooted. I also felt that being a stickler for the diet might have been causing more stress than it was worth in the face of having lots of stress already. Sure, I probably should have stuck it out for longer to see what happens, but I still AM taking the supplements, like probiotics, eating lots of fresh vegetables, eating minimally processed foods for the most part, trying to avoid sugar and fake sugar for the most part, and still avoiding fruit, dairy, chocolate, and nuts. Avoiding gluten didn’t seem to make a difference in my skin, so now I do have some toast or crackers every day, but I don’t go crazy with gluten and eat it at every meal.
So. Now that it has been a month, how am I doing?
- RED. My face and neck are still about as red as ever, but the redness SEEMS to very slowly be fading. It’s more blotchy than all one color, which seems promising. It’s not as prominent as it was a few weeks ago. I still have to wear concealer if I want to look normal, as I’m scary looking otherwise, but thankfully it seems to be improving.
- ITCHY. For the most part, I’m itchy most of the time, but it isn’t something that is completely uncontrollable, and I can usually distract myself, like if I’m at work. However, a few nights ago I had a huge horrible itching attack where my face and neck began to itch. My face and neck always seems to get somewhat itchy in the evenings, just after the duration of the day and probably getting dry. Knowing what would happen (an inevitable itch cycle), I itched just a little bit and hoped that would settle things down. I should know better ’cause it never works. An uncontrollable itch began to start and spread all over my face and neck. After trying to ignore it for about the longest 30 seconds ever, I hightailed it to my bedroom, shut the door, and began the blessed relief yet curse of mercilessly itching my face and neck. I keep my fingernails short so I didn’t do much damage, but it was like the itch to end all itches. I thought it would never stop. I was entering the horrible itch realm. The realm of begging, pleading, “PLEASE GOD MAKE IT STOP”. What does it feel like to be a person that doesn’t itch? Or one that can just itch a single spot normally, and then be done? I haven’t known that feeling for years and feel like I’ll never know.
- OOZY. Some people with TSW wake up in a state of ooze. They are exuding crazy amounts of liquid. I didn’t use steroids long-term, so thankfully I don’t wake up soaked or anything, but I did have a few spots that did this. I had a random itchy oozy patch on my upper leg near the groin, and then my earlobes (which have been very flaky and dry for months) will sometimes ooze and crust at night. Nothing huge though thankfully.
- DRY. I felt like my skin would never make its own moisture again over the past few weeks. It was so dry that even slathering it with olive oil and then putting Vaseline on top didn’t completely help things. I got gleefully excited the other day when I finally had a small pimple, as this meant my skin seemed to finally be manufacturing oil. I sometimes feel like I should use NOTHING on my face at night and let it try to learn to ‘make its own moisture’, if you will, but it gets too dry and uncomfortable to use nothing. I seem to be very, very slowly getting better regarding dry skin, but by the end of the day, my face is tight and uncomfortable – around my eyes especially, which is very annoying as I constantly feel like they are puffy and half-closed, because the skin on my eyelids is so tight. It prevents me from making full facial expressions or genuinely smiling if it’s really bad. If I look closely by the end of the day, the upper layer of skin has become flaky (notably in the places I used steroids most – around the eyes and around my mouth), and I can go through a cycle of peeling off these flakes which then repeats itself the next day – moisturize, dry/tight, flake and peel, repeat. After I moisturize, my skin FEELS soft to the touch, but still looks red. This is encouraging to me as it wasn’t always soft to the touch!
- SKIN SMELL. I mentioned my skin had a weird smell in a previous post, kind of like wet paint, but very faint. The oozy parts did have this smell, but it seems to be dissipating. Healthy color also seems to be coming slowly back into my skin, notably my legs.
- PUFFY EYES. When I started the Candida diet around a month ago, I would frequently wake up with puffy eyes. I had to get up earlier than normal to put ice on them before work. Although I still wake up with *somewhat* puffy eyes, they are overall better in that respect and I haven’t had to ice them for a few days. I’m also hoping that after all of this nonsense heals, my eyes will have their Dennie-Morgan lines fade and become less prominent. (These are lines under the eyes, also called ‘atopic pleats’, that are markers of allergies and dermatitis. Other people might not notice them, especially if they aren’t right up close in my face, but I feel like they make me look older and more tired, hence I get self-conscious of them. I always HAD them very faintly since I was a kid, but they got more noticeable when my eczema got worse.)
- MISCELLANEOUS. Other bloggers have talked about non-skin symptoms like sweating, temperature regulation, and hair loss. For whatever reason, my eyelashes seem to be getting more sparse and less lush. With body temperature, it’s not anything drastic, but I’ll have sporadic days where I feel warm and cold at the same time, or instances where I just can’t seem to warm up. It IS February in the midwest, so the near-zero wind chills have not been helping.
- BODY RASHES. My legs, stomach, and lower back seem to be slowly getting better. A few weeks ago they had widespread scattered rashes, which have now scabbed up/dried up and seem to be slowly, slowly healing. They are also not as itchy, even though it’s still tempting for me to itch and pick at them. My elbow creases, shoulder area, and wrists all have rashes too, but these also don’t seem to be getting any worse – they’re unsightly (I have sometimes even been using a little bit of concealer on the backs of my hands at work so the rashes aren’t as noticeable), but seem to very, very slowly be drying up and scabbing off. Sometimes the dryness is very painful and feels like a sunburn. I was limping the other day because the area behind my knee was hurting when I bend it, or it will hurt to bend my arms because of the dry rash in my elbow creases. I know I could go through another flare with the cycles of TSW, but I remain optimistic that a few more months of healing will bring me right into spring and summer and by then I’ll be able to wear mostly whatever I want again… I HOPE! 😀