What is Topical Steroid Withdrawal Syndrome and how do I prevent it?Sorry it has been such topical steroid withdrawal hair loss long time between updates but month 3 saw the start of some improvements. Yes during tsw I stopped shaving everything because it was too sore. Poor Ian was engaged to Chewbacca. After I got through the layers and layers of hobbit hair I found……. The body temperature control issues seem to have settled steroidd month and oozing almost gone.
Topical Steroid Addiction and Topical Steroid Withdrawals
Sorry it has been such a long time between updates but month 3 saw the start of some improvements. Yes during tsw I stopped shaving everything because it was too sore. Poor Ian was engaged to Chewbacca. After I got through the layers and layers of hobbit hair I found…….. The body temperature control issues seem to have settled this month and oozing almost gone. It has enabled me to do a lot more. Sweating does make me crazy itchy but I think exercise is important to healing. The fact that my body is starting to sweat again must be a better sign.
I feel better mentally after I have ridden too, TSW makes you feel stuck in some ways just waiting.. I do feel a lot of the most itchy areas fit with areas of lymph nodes. I was just pleased to be around him what ever he did. He was often spooky pre TSW. Once my attitude had changed so did he, he became more reliable and was doing things with ease that I used to find difficult. Feet and ankles are still my worst areas and shed like crazy.
It is my hands holding me back from going to work again as they are not strong enough and full of cuts. Ian bought a PS4 and a few games to occupy me a bit in the hope I scratch less. It definitely helped with the boredom. Have to say though the creepy crones are definitely my hand twins. Face moisturiser advert was by far the best sarcasm alert!
The woman in my mirror ran away screaming like 3 months ago and put a bag on her head. Guess that means I should only wear a haz mat suit for casual days then, thanks Venus. Brrrrilllliant, guess nothing goes with my skin, awesome! Went for a nice walk round Alnwick gardens and managed to embarrass my friends a bit, it turned really cold so ended up looking like a wierdo wearing the picnic blanket.
I watched the eventing in my first month of withdrawal under a duvet shivering and itching thinking it would be a long long time before I could spend a day out like that walking around.
I was so happy I managed to go to Bramham horse trials with friends only 2 months later in my month 3 tsw. I was so pleased my skin let me have a day like that walking the cross country course all day, and so pleased the weather was good as if I got rained on that would have been crazy itch.
I think moisturiser withdrawal is starting to pay off a bit. For the first time in years the middle of my back, and lower legs do not feel dry after a bath. Really hoping this continues and other parts of me catch up. I still use a bit of jojoba oil or almond oil on my face and hands for mobility.
Moisturiser withdrawal is easier on body as you can put clothes on and forget about it. Not as easy on face and hands as they are on show and move a lot more. It has been a bit more sunny in the north east so I decided to try get a bit of sun for an hour or so, skin seemed to cope well unlike the few months previous to tsw and the crap way my skin behaved with light therapy before I started TSW.
In the later stages of TSW sun is meant to help with healing, I think when I was severely erythrodermic pre TSW that was definitely not the time to try. Changing rooms during TSW are pretty scary. Positives for this month…. Definitely feeling better and more positive….
Lower legs feeling good…. Skin feels tight and a weird texture and then sheds for a day then is better the next day before the cycle starts again. My face looks redder if I sit in the house all day, if I get out it looks a lot better. I now look more like I have severe full body eczema. Since ooze reduced I have been able to get out more and see friends and see my horse.
There is something relaxing about being with Cheddock, on the days I manage to ride I am much happier, I wear a silk balaclava under my hat and keep my hands and arms bandaged up. He is doing awesome at the moment. Horses are so sensitive and notice any unusual smells. To a human nose the ooze smell has almost gone from upstairs which must mean I am healing a bit or the methotrexate is actually starting to help when I am not barfing it up into a pan.
I have managed for the first time since starting TSW to get up and not bath straightaway! I also managed to go out to a pub for some food, having resigned myself initially to want to hide in a hole and hibernate until I am healed, I am amazed that my skin on my face allowed me a day I could go out in public without feeling really self-conscious.
I managed to go to the cinema! If you are reading this Mr. Since starting to taper down and starting TSW my body seems to crave food and need masses of calories, my portion sizes have gone up and I think I put away more calories a day than Ian per day but still lose weight. I guess a lot of energy is needed to make new skin every day.
Although TSW is awful it is amazing to see what the body does. There are no more shivers! I am still bathing once a day normally. My belly can go from bright red, to normal coloured to red stripes all in one day. The red stripes are weird. It makes my belly look like a ham joint with the string on.
I still have my arms bandaged and cotton gloves on, and these are going to be the trouble spots I think. It is hands and arms that are holding me back from getting back to work. Scabby fingers crossed for more improvements. The good news is my hair loss has reduced, the texture has changed from dead and wire-like, to soft and fluffy. Now for the update on my favourite part of the month…. So I have been downgraded from severely erythrodermic to severe eczema.
My derm wants to refer me on, I would rather she saw the whole process from start to finish, I have hope than when my skin heals I might convince her that there is something to this TSW thing, and in doing so help other patients in the future.
Slowly slowly catchy monkey, Oh, and I love being right even if it takes a few years. The start of month 2 was quite difficult with the ooze. My face was particularly bad.
Swelling had reduced, but my upper lip, chin and jaw line drove me bonkers. The crawling sensation would not let up on the jaw line until it was rubbed took a lot of self-control to not use nails. For a few days this was terrible at night. One night in my half asleep state I rubbed at my jaw and chin and cheeks, all of a sudden it was like someone had painted my face with what felt like wall paper paste, it caused a bit of a panic as in the dark I imagined my face had finally fallen off.
No, it was just ooze…… mmmm nice. It had dried into a layer of crust by morning after I peeled myself from the pillow. I tried viscopaste wraps on my face after some tips from my fellow red skinners thanks ladies. They can be left for a day under bandages on other body parts but a maximum of 90 mins on the face. This did help to dry up the ooze. The temptation to rub or pick at the crusty bits is overwhelming but if you give in fresh ooze would appear.
Ian got some scented plug-ins for upstairs to reduce the dreaded ooze smell, I must say it helped a bit. Sanitary towels have more than one use! I found the sanitary towel method really helped.
I ended up wrapping a bandage around my head with a sanitary towel stuck to the inside of the bandage so that the towel would rest against my cheeks, chin and jaw. I bought some cotton gloves to rock the mime look. It makes me feel like someone with grey-scale in game of thrones, princess Shireen, I sympathise.
I got a bad cold at one point which meant the sodding asthma came back, I really hope it disappears again soon. A cold is a pain in the arse when your upper lip is always crusty with little cuts and oozing, as our noses are a hive for staph bacteria, it was probably this that led to me needing antibiotics after my derm did a swab and it came back as staph. I am trying out colloidal silver to try and prevent it happening again. The course of antibiotics led to me missing 1 weeks methotrexate dose, I missed a second as I threw up a few hours after taking the dose.
Who do you ring when you are fainting on the floor and throwing up in a pan? Apart from the pan-barf incident otherwise the methotrexate has been okay, just wish it would hurry up and do something.
Most of the time I manage to stay strong about the tsw thing, but some days it gets to me more than others. Apparently the sound of my crying is the worst thing for Ian as there is nothing he can do or anyone can do to help me. Emotionally it is hard, you feel stuck and like you are missing out on so much. I feel so much better if I get out and about. TSW has also made me realise how many lovely cool friends I really have. Well TSW is a rollercoaster… face got better and literally a day or two later and it was back to crap.
Hair still coming out, feet still awful, red sleeves red again, lymph nodes still eggs. Rashes on whole body only tip of nose is normal skin. Yoda eyelids back again.