Update

 So it's now 2026 and it's been a good few years since I updated 

Things are still going amazing well with my skin and I've not had a flair up since I fully healed

To all of you in the thick of it - hopefully this will end soon for you too and you can enjoy life once again

Update - just a little update with pic to let you know my skin is still going good HEALING HAPPENS !!!  I even had a tattoo done with no ill effects as you know from my pics I had a tattoo on my wrist of my son' self portrait now my daughter's reached the age of 5 (the age Ben did his) I've had her self portrait done on my other wrist haha
good luck to all those still going through rss x x

Just a little update again to say still healthy and still doing well ni creams needed still x

Please sign

https://www.change.org/p/secretary-for-health-jeremy-hunt-u-k-dermatologist-recognise-and-treat-topical-steroid-addiction-red-skin-syndrome?recruiter=38926506

update part 2

It has been a very long time since I posted on here and it's been a whirlwind of a ride x I am now just over 2 years tsw and I have been healed for a good few months now, once I managed to get all the infections under control my skin just got better and better, after I came out of hospital that last time I completely changed my routine I started a daily protein shake, I got some fab advice of a lady in the tsw facebook group I have mentioned before and I started to use a mix of sudocrem mixed with vaseline n added tea tree oil, I applied this to my skin and put dry bandages over, I also used Viscopaste bandages while I was at work, these are zinc lined and kept me comfortable, I alternated between dead sea salts and himalayan bath salts or sometimes mixed the two I added tea tree oil to the dry salts before putting in the bath, and I never got infected again that is an amazing thing for me, my hair started growing back and I started to put weight on again, I ended up splitting up with my partner after tsw as it really did take a toll on our relationship, I found after having to rely on him so much during tsw that it changed the way I felt I just needed to get my independence and identity back, I also quit my job and began a new career as a care worker and am currently doing my nvq, so my life has changed alot, my ex and I are still good friends and I couldn't of got through all this without him having someone helping you really helps x anyway enough of the rambling I'm going to post my before and after pics on here for you all too see, healing does happen and I no longer use any creams at all and haven't for a while now x I sleep normal x hardly itch......yes that is the very last thing to go I'm afraid I think alot is habit as your doing it for so long it's hard to break x

 these are my recent skin pics as you can see it's clear, clear, clear

My hair has grown back from me shaving it all off and it's thicker x

Just a mix of how my skin was during tsw so you can see the comparison x 

I really hope that one day the derms and doctors will listen to our story's and stop using steroids for non life threatening things and the suffering will stop x

update part 1 hospital again and again

Well not long after my August post I ended up back in hospital I felt myself going downhill fast so went docs and was admitted straight to hospital where I spent another week on fluids and antibiotics for sepsis luckily not as bad as the First time,
Turns out it wasn't the immunos helping it was the steroid injection they had given me when I was first admitted with septic shock as the reason I went down hill so fast was a rebound from the kenalog leaving my system
After the fluids and antibiotics I felt better but my skin was back to red weepy and sore
I also developed a lump at the site of the kenalog  injection I mentioned it to my dermatologist who decided to request a scan
on the 21st September while still waiting for my scan appointment my lump started getting even bigger and very tender but it was my daughters birthday so I tried to ignore it later on that night I was in so much pain I rang the out of hours doctors and they asked me to go hospital to get it checked
The doc took one look at it and sent me to the surgical ward for assessment turns out the injection site had caused a massive abscess they kept me in and said I would have surgery to drain it the next day
The doc came round the next morning and said they want to try get my infection markers down before surgery so they were going to give me a double hit of iv antibiotics and move me to my own room about an hour after my iv antibiotics had been administered I was moved into my own room and started itching like a mad woman and my skin was turning purple so I buzzed for a nurse and she came in and called the doc he said to get me iv antihistamines and a hydrocortisone injection I said no steroids I rebound badly from them so they agreed to just antihistamines no sooner had these been hooked up I started to vomit the nurse got me a pan to be sick in and left at this point I was sat at the end of the bed with a pan in one hand and the buzzer luckily in my other hand as I started struggling to breath I pressed the buzzer again n the nurse came in I managed to say can't breath before it all went crazy I couldn't talk couldn't move just slumped over I remember being quite calm and thinking this is it I'm dying and it didn't panic me at all then I was thrown back on the bed which had been lowered into the crash position had oxygen up my nose and was hooked up to a heart monitor I heard the doc say get me that hydrocortisone my heart rate wouldn't stable it was up and down like a yo yo and I started shaking uncontrollably I wasn't getting enough oxygen so they changed me over to the big face mask and really pumped it up it took them a good while and a few more injections to stabilise me but eventually everything calmed down they decided to put off my operation for another day and took some bloods instead, but not long after the doc came round and said they had changed there mind I was going down for my op that day as my infection markers were sky high and there was a real chance of the abscess causing blood poisoning if it wasn't dealt with
So off I went down to theatre to be put asleep the surgery took a good few hours but at last the lump
was gone along with the pain. I was kept in and monitored closely as I developed mrsa so was still in my own room and was given my own toilet room to use I felt like a leper haha finally 9 days later I was allowed home but had to go docs everyday for the next week to have my dressing changed on my wound as they left it open to heal from the inside out they did a good job
Oh I also decided stop the immunos as once the kenalog was out my system it turned out they weren't keeping my skin under control at all

things that have actually helped the most

Through all of this I have had three things that have had a big impact in helping me
1. Immunos - cyclosporin not a good thing to be on especially long term and the side effects (skin cancers, liver damage, kidney damage) to name a few shouldn't be taken lightly its definitely a drug to weigh up the pros n cons off before you start but if you are severe and willing try anything id recommend,  you get checked regularly while on them, blood tests etc
They took about 6ish weeks to kick in properly I started on 125mg im now on 75mg and doing so good im going to 50mg

2. 50/50 emollient, I found moisturiser left my skin alot more tearable than the 50/50 did I also melted in in my baths on the days I couldnt have a bleach bath.
This emollient is the only one I have been able to use regularly I started off applying 2/3 times a day and i slathered it on now I use it every other day and only one application and a very thin layer

3. Bleach baths- fab to stop Infection,   half a cup of normal household unscented bleach in a full bath soak for 20 mins then rinse off,  I did this 3 times a week when I was at my worst I now do it once a week purely just as a precaution to stop any type of infection.  If its your child thats suffering I would say try the bath yourself first just so you can see ot doesn't burn or sting
I think the key to this is make sure you rinse off and apply the emollient as soon as you get out this stops any drying effect the bleach can have

sepsis

Ive decided do a lil note on sepsis - the top two pictures were taken in the hospital you can see how swollen my legs had gone I was sat in the hospital garden but had to prop my legs up
www.nhs.uk/conditions/Blood-poisoning/Pages/Introduction.aspx
Copy and paste the link to read up about it, of tsw is giving you the chills id recommend you taking your temp daily as if you begin to get a fever you wont realise
The week leading up to my hospital admission I noticed I went down hill rapidly with my skin, I was in work Wednesday feelin great, by friday I was bad so went docs and was given bath stuff n moisturiser-no vitals where checked,  I was worse sunday so had to phone in sick I thought the new cream had made me worse come monday I phoned docs again she said u dont need to come in ill give you some antihistamines and a week off work, Wednesday night I went bed and slept like I havent for months a deep deep sleep but wierd dreams my partner came home n woke me my bed sheet was covered on brown/yellow ooze I felt awful ive never felt like that in my life, rang docs and was told go straight there I would be seen as soon as I arrived I went in my pjs vitals checked my blood pressure was low, my temperature was very high and my heart beat was rapid, so the hospital was called n ambulance called for that was the beginning of a 13 day hospital stay on iv fluids, iv antibiotics,  anti clotting injections and a steroid injection, I was told I was very lucky the stage I was at a day or 2 later and I could of been beyond help
Here are some pics of how my skin went during that time

For more sepsis info please copy and paste this blog info, sepsis really isnt to be messed with

http://www.survivorsofsepsis.blogspot.ca/?m=1

progress pics

The above are In order oldest first left to right 

the face pics are left to right big pics then little

the bottom pics are recent

update

Well I spent 13 days in hospital all together because of the sepsis and needed a further 6 weeks off work then went back on reduced hrs for a week and just about manages but the sepsis has really wiped me out but luckily I had holidays booked so now im off for 2 weeks x
Ive been on the cyclo for a good few weeks now and my skin is wonderful cant believe it iveeven managed to reduce my dose I'm nearly 6 months in now and wondering if maybe this is it for me maybe my tsw journey is over im going try lower the cyclo again soon and see how I go

Im going to do a post in a sec of pics taken during my tsw journey

hospital

If you read my previous post about how awful I felt it will come as no suprise that I deteriorated very quickly, I woke up Thursday morning to find the sheet I was laying on was covered in browny/yellow ooze I got in the bath straight away but felt so ill, I got out n just sat in the bathroom not really able to move, I shouted dave n said I was in a really bad way I think I may need go a+e, I rang round to try get a lift there but then I decided I would ring the docs first c if I could get a home visit, they said a doc would ring me back while waiting for the call I decided call the derms office tell them I was bad anychance I could be seen they said no, the doc rang me back just after 9 I asked for a home visit he said we only do them for house bound patients so I told him I basically was I was in no fit state leave the house, he told me he could do one but not till the afternoon or if I could get there somehow they would see me straight away.
I decided try make it over to the docs as only a 5 min walk away so I donned on my coat over my onzie n put my trainers on dave had rang cal n he came n sat with the kids
Dave helpd me get the docs and I was seen 5 mins later the doc took one look at me and took my blood pressure temperature and pulse and told me he was ringing rhe the hospital to have me admitted then ringing for an ambulance as my temperature ws high blood pressure low and heart beat very fast
I waited in the surgerys side room and first response turned up and took my vitals again n checked me over then the ambulance arrived I was taken in a wheel chair to the ambulanceI was really worried I knew I was bad but didnt think I was that bad, I was taken from the ambulance to the a+e ward and given a bed the docs came over to try take blood n get a candula iv fitted but they couldn't find a vein lots of prodding and 3 docs later they decided to scan for a vein, they managed find one in my arm but it was very thin,
Bloods were taken and an iv put up with antibiotics and fluids they then came and give me an anti clotting needle in the stomach and a steroid injection in the leg,
I was suffering from a severe infection called sepsis and had endema (full body swelling)
I was told that even though I was very poorly I was also very lucky that I got there when I dis as they caught it before it had chance to do unrepearable damage my internal organs
I was then taken up to a propper ward and 10 days later I am still here haha Im off the fluids now and dont need an iv anymore, I also developed herpeticum while in and was put on antivirals which cleared it up fast,
Ive had a skin biopsy done but no results back as of yet, im now on antibiotic tablets, and recently been started on 125mg of cyclosporin as they stopped the azathioprine when I arrived I also take hydroxine and piriton antihistamines and still having the anti clotting injection, my vitals are checked regularly and mosst of the time are normal just an occasional change in blood pressure but my hate rate is still quite high n my feet quite swollen but other than that im doing well n hope to go home soon
I was surprised to find I had lost just over a stone in weight they weighed me here n I was 7st 6 I couldn't believe I had lost that much
I would urge anyone going thru tjis to go the docs if they are feeling bad not everything is just a side effect of tsw and I dread to think if id of listened to the ppl on the forums telling me it was just part of tsw, I could of ended up dead!

immunos n moisturiser

Well im in week 11/12 and my god im in the mother of all flairs im on week 1 of taking a low dose of azathioprine as its just got too much with the kids n work, I was using oilatum plus in the bath n epaderm moisturiser these worked well for nearly two weeks but just changed to dermol bath stuff and dermol moisturiser x ive just finished my second course of antibiotics for a staph infection
Im red raw all over and weeping like crazy especially my legs im back to see the derm in two weeks to hopefully up my dose of azathioprine and maybe I will start to see the benefit
I went docs again yesterday for sleeping pills as the lack of sleep is just awful lying in bed tossing turning and itching non stop is just hell haha
The weight loss is another thing im not liking I now weigh 8 stone and still not got much of an appetite I will b mentioning this when I go back as I don't want to lose anymore x

update x

Not posted in a few days so thought id update, I have been going through a mass shedding stage the amount of skin falling off me is ridiculous,  ive had my derm app thru its on monday I think im going to see about immunosuppressents as this really isnt anyway to live even if it is only for a while, you can still get flairs etc but ppl say they are less severe and that sounds good to me haha
My mood hit an all time low last week too felt really down and had a cry but luckily managed to perk myself up and get back to normal, I had to take a day off work Wednesday too as my skin was literally falling off my face, not a good look to have when working with food x heres some pic updates as you can see im still a mess but the plus side it I seem to get itch attacks then a break on and off now where as before the itch was constant

urgh face!

Well my face continues to be a pain in the arse its so flaky it looks a mess but it looks worse with moisturiser on! So prefer the flakes even though I look a state.
My first day back in work didn't go to well I lasted 3 hours as vomited and felt bloody awful think this was either the antibiotics or the fact that I had done jack crap most of the time I was off on hol so my body got a shock being up and out early!
I was freezing cold too despite the double layers and bodywarmer so ive finally given in and asked to be moved to a non chilled dept so I have 3 shifts left on the deli before I start my new dept yey count down has begun haha!
Got to go and pick my son up from school in a bit and this is the one place I hate going, work doesnt bother me much but walking into that school yard full of 'perfect put together mums' makes me feel hideous and I feel awful for ben that I have to look like this, hopefully by the time he goes seniors in a year an a bit I will look like me again as the senior school years are hard enough with out a mum that looks like an monster haha x hers a pic today of my face as you can see no change really :0(

flakes

Well today im well and truly flaking like crazy this is the second time since I started tsw early march so it looks like each cycle takes a month to do,so now im noticing the pattern I can keep track of it better and hopefully soon I will get one of the 'brakes' that everyone talks about fingers crossed.
This past week or so ive been the worst so far, no energy, looking bloody awful, feeling bloody awful and generally not wanting to do anything bar have a bath haha, today durable ng the flaky period im feeling slightly more energetic not much though but still a tiny bit of a change is better than none.
Back to work tomorrow :0( haha x

no change

At the moment one day just blends into the next with no change my skin goes red hot itchy and weepy then flakey and falls off then redhot and weepy can't wait for the break that people talk about. Hopefully I will get one soon
Im back in work in 3 days n really dont know how im going to manage it that's whats making me think about maybe asking about immunosuppresents when I get my derm app I know quite a few people use these successfully through tsw as the way I am now im no use to anyone and thats not a good way to be when you have a job and kids :0(
I hope the appointment comes through soon x

knees again

My knees are a total mess my god im readyfor this to be done with already ive got untill Wednesday for this flair to calm cos im back in work then :0(
Dunno what I will do if it doesn't x

red monster

Ive woke up this morning looking like a red scaly monster today think im having my secondflair before tthe first is even over the sleeping tablets of the docs were crap I took 3 in the end and still took me ages to fall asleep once sleep came though it was a deep sleep of about 6ish hrs so better than I have been getting but not what I expected to happen :0(
I seriously cannot wait for the day I get my first break it will be a joyous day haha as atm I just seem to be going from bad to worse

 

lesson learnt

Well I have learnt not to put a bloody thing on my skin, the salcura spray looked like it was doing my skin wonders so decided to put it on both arms the full length of them the stupid fool that I am.....well needless to say I scratched myself stupid all night and ended up with a trip to the docs this morning :0(
My docs app went well once I explained red skin syndrome she didn't even try to give me steroids yey! I left with a prescription for sleeping pills, antibiotics and some 50/50 cream and also a derm referral yey! I just hope the derm is as open minded as my doc was x
Dont think will be trying the 50/50 though moisturiser is not for me x

salcura trial

I recently sent off for a trial sample of salcura it came today in the post. Ive chosen to trial the spray on my wrist and the cream on my hand.  After doing mw for 6ish weeks I am sick of seeing my dead skin on everything but im not ready to try normal moisturiser again that's why this product especially the spray appeals to me as its completely natural and free from steroids, hormones,  cortisones, peroxides, , alcohol, parabens.
On initial application both areas stung for a few minutes.  Here are my before pics of areas so can compare after a few days (im using the spray on my ben wrist)

 

I didnt bother with the after pics as salcura wasnt for me I facebooked them to say I had literally ripped my skin off during the night as stupidly I covered my arms in the moisturiser they were very nice and sent me out a gentle version of the spray as it's such a small bottle and im head to toe mess I decided not to spot test it this time but to use is in the places I needed just once a day I did notice a very tiny slight improvement while doing  this I didnt rip mu skin off where applied - backs of knees and inner elbow the trail bottle has ran out now but I definitely think one application a day is the way to go with this I do have one more cream to trial though before I go out and buy a full sized bottle but so far this is the top of my list to buy.    The new one im trying is