A diary of my Topical Steroid Withdrawal that I never thought I had

I am very excited to be able to share this with you all as out of everything I have ever posted on here, I think it's the most important. It is an invaluable insight into my withdrawal made up of snippets from email conversations my mum had with her friends over my two year withdrawal, updating them on my progress. It was my mum's idea and I am so glad she did it as I had forgotten certain things that happened and even remember some parts differently. It also made me realise just how tough it was for those two plus years as I had been beginning to wonder if it really was as bad as I thought. Some of the entries have been pieced together from separate emails to other people, there are also replies from the same day and some are only sentences but I think it will help you get a pretty good idea of what it was like for me at the time.

I hope it gives you a little injection of hope that you will get better. TSW is incredibly scary and confusing and can feel at times like it will never end, but it does. Use this diary as a reminder that anything can happen at any given time. It's very long, so either grab yourself the largest mug of tea known to man, or save it for a later date.

Love to you all (especially Mum!)
Cara xxxx


23 June 13
Cara has been relying on steroid cream to treat her eczema, but after finding out about something called topical steroid addiction, she has decided to stop using it and go 'cold turkey'. Needless to say, she has had a major flare up and it has knocked her out. She has had to miss shifts at work and is taking it one day at a time. It is going to be a rough ride for her, but she is determined to do something about it now.

1 July 13
TSW can take 6-24 months before you are healed and the withdrawal effects are severe. Cara stopped on 6 June and it wasn't too bad in the beginning (compared to what we had seen online) – slight weeping below her mouth, extremely dry skin and red patches on her arms and she managed to do some shifts at work and stayed with a friend for four nights. It started to get a lot worse from 20 June and she wakes up in the night very uncomfortable. Her face and neck are bright red, her eyes are puffy and the skin on her face is weeping. Today is definitely the worst day so far. I am very worried about her, but have looked at blogs of people also going through this all over the world and the symptoms are the same but they eventually heal. I am letting you know this because if she is not too good on 11 July, I won't leave her.

2 July 13
Cara is in a bad way. Last night was the worst night so far. I am attaching a link to a video by a doctor who recognises steroid addiction. She is determined to do this and all I can do is support her and make her as comfortable as possible but I am thinking of making an appointment with a doctor today and tell them what is happening and see if they will just let her come in for a check-up now and again. It is so good just to type it out so thank you for listening. I can be strong if I know no harm will come to her. There are so many blogs of people who are coming off topical steroids and they are going through hell. It makes you realise that special creams or taking various foods out of your diet (dairy, wheat, sugar etc.) will make no difference while you have steroids in your system.
I have made an appointment with the doctor for Thursday morning but will phone at 8 a.m. tomorrow to try to get an earlier appointment. We have no idea what is going to happen next with her skin and how long it will take to heal. I was reading about a young girl yesterday and it has taken her over two years to get over it, but it could be 6 months, we just don't know. I have been wary of topical steroids because they can cause thinning of the skin but wasn't aware that when you stop using them you have withdrawal flares as your skin has become addicted to them.

3 July 13
Cara had a bad night with not much sleep but the puffiness is down a bit so that is making her feel better. Hopefully she is starting to go through a better phase so she is more comfortable.

5 July 13
We saw a doctor yesterday who was very kind and wasn't horrified by what she is doing. He prescribed a very strong antihistamine with a sedative so she could sleep at night. Cara has never had a problem sleeping until now because she is so irritated. She looked it up as soon as she got home and really doesn't want to take it because it can cause other problems. She wants to try to get through it without adding other medication if possible. We both wanted a doctor on board in case of complications because this is a relatively new thing and we only have info from what we have seen on the internet. To be honest, if it wasn't for the wonderful people blogging and taking photos of what happens, I would have been a nervous wreck because it really is brutal to witness, but I know from them this is normal for withdrawal and Cara is coping with it. All I can do is support her in any way and her friends have been wonderful.

7 July 13
Cara is going to try to eat a very plain nutritious diet. For now, I have been concentrating on vitamins A, C and E for Cara but we need to rethink everything. We are looking into giving up milk – at the moment we both love porridge and blueberries for breakfast so looking at alternatives for the milk. Cara's skin weeps on her neck and face and last week her skin was so dry that the skin cracked along a fold of her neck. It was quite bad but healed very quickly which surprised me even though she has always had fast healing skin so very grateful for that.

9 July 13
The hot weather isn't good for Cara, but she has an electric fan now which helps. We have cut out sugar (apart from natural sugars) and it hasn't been hard, but that might be due to the hot weather. Cara has been having Greek yoghurt every day and hasn't had wheat since Saturday and has noticed a difference in a good way after that short time.

10 July 13
Cara had a bad day yesterday but today seems a bit better and the cooler weather helps. It will be a relief if this is the answer to finally forget about eczema and allow her to have a better quality of life.

11 July 13
It's five weeks today since Cara stopped using topical steroids. She has taken a photo of herself every day since Saturday 29 June to record the changes. The main parts affected are her face, ears, neck and arms and they are very red and weep and are extremely itchy. She has patches on her chest, stomach and back. Her arms were swollen but they have gone down now thank goodness and the puffiness has gone down in her face apart from her eyes. I bought an electric fan because it has been very hot here for the last week and that really helped. We don't really know what will happen because looking back at the photos, they are different every day.
Cara is eating an avocado every day, oily fish, plain probiotic yoghurt with fruit, green vegetables and carrots, extra virgin olive oil on potatoes and salads and porridge with blueberries for breakfast.

15 July 13
Cara isn't sleeping well at all. It is very common with other people going through the same thing and they seem to average 2-3 hours a night. Yesterday was awful. I felt so emotional all day and just wanted to cry. Cara takes a photo every morning to record the changes and looking at them last night was just so sad. It is the strangest thing because it is so changeable. My sister in America is being very supportive and sent her a lovely email and Cara speaks to her friends on the phone. I'll have to go because I have lots of work to catch up on but will email during the week to let you know how she is.

17 July 13
Our flat is very hot and difficult to cool down even with an electric fan. Cara is finding it very difficult and sleeps only a couple of hours a night. She is not too good at the moment and we don't know if the heat is making it worse. She has an appointment with a doctor 'with a special interest in dermatology' on Friday but we both think she is not up to the journey so might have to cancel. Cara thinks it is pointless going anyway and she has an appointment with the local doctor next week who can check she is ok. There is no real treatment for this and it should get better with time.
Cara was very uncomfortable last night before bed but managed to calm down and slept a bit longer than the night before.

18 July 13
I bought an electric fan a few weeks ago for Cara and it really helped her in the beginning with the itching but she tries not to put it on too much because it dries out her skin even more. It has been so hot here and it has been really bad for Cara. The bedroom is an attic room with a small window that is protected either side so no air gets through and during the night it was stifling even with the electric fan. A couple of nights ago, I brought the mattress downstairs to the living room and it is cooler because there are two windows at each end of the room. A positive of the hot weather is that I am doing a lot of washing every day and it dries really quickly. Cara has all the symptoms of TSW now. Her skin is very red and she has red sleeves and white palms. Her legs are not affected but her upper body is red apart from a white 'vest'. Last night, she became a bit distressed and felt shivery even in the heat. If I didn't know that this was normal for TSW, I would be frantic but have to help her as she is determined and I don't think there is any other way. Looking forward to cooler weather because that will definitely help her. Cara cancelled her appointment with the doctor at the hospital because the journey would be too much for her and she doesn't think it will do any good. She has an appointment with the local doctor next week.
Cara only wears cotton pyjamas all day – very loose T-shirt style with short sleeves but mostly has the top off. I use non-biological powder and don't use very much. Cara doesn't really sweat much which is to be expected but her skin should perform normally one day. She has been taking over-the-counter antihistamines but doesn't overuse them so they are effective when she needs them.

19 July 13
I am attaching a photo Cara took this morning of her arm. Looks paler in the photo than it actually is in real life but you can still see the contrast.

22 July 13
Cara has had a bad couple of nights. It is very changeable but is to be expected from what we have seen other people go through.

25 July 13
Just got back from the local doctors with Cara. She is going every month (or before if she needs to) so he can keep an eye on her. He took her blood pressure and said it was low and that was good. He said he was very interested in what she is doing and is using her as a case study. I am just glad he knows the situation and Cara said she will tell me if she needs help. I will help and support her in any way I can, but it is a bit scary at times. Cara told him she didn't get the prescription for the strong antihistamines with the sedative he gave her last month because she wants to get through it as naturally as possible.

27 July 13
Cara has gone down a notch this week – she gets shivery and a bit panicky for a while but manages to calm down. Her skin is so angry and red (looks purple sometimes) and it has spread to her lower back badly and she is very uncomfortable. Her face and arms weep and she wakes in the night to scratch. I don't want to leave her at all to go anywhere other than the local shops so I ordered another sheet and some more cotton pyjamas online from M&S and they arrived yesterday so that will help with having enough to change now.
I think any form of relaxation will help and Cara is going to try breathing slowly if she feels a bit overwhelmed. My friend has just visited and Cara said she didn't mind seeing him. When I saw him out, he said he was shocked and a bit upset because he has known her for years and said it looked like she had been burnt.
Cara is a member of a TSW forum and she is doing a lot of research when she is not feeling too bad. She doesn't feel like reading at the moment. Hopefully she will have a calmer period soon to recharge her batteries. It has been raining for about half an hour so that should freshen everything up.
It’s strange you should say that about the forum because Cara has said that the majority of the posts are not very positive and a bit bleak, but she mainly looks at it for information. She enjoys watching Ellen and when she is not feeling too good, she looks at Persian kittens on YouTube. I suggested very simple yoga might be good for her when she is feeling better. A few weeks ago, I got her an audio book from the library because I thought it might distract her at night, but her skin gets so irritated that any noise adds to it and she can't concentrate.
Cara has just gone to have another bath. I sometimes get a little frightened because so few (it seems) people have gone through or are going through withdrawal from topical steroids and it looks so bad that I just hope she will be ok. I can be very strong if I know she will be ok in the end and just have to trust that she will be. It is so good to be able to write down how I feel and hope you don't mind.
I saw your other email re cotton gloves. I bought some for her when she wasn't too bad at the beginning and taped them loosely around her wrist so she couldn't pull them off in the night (Cara's suggestion) and they worked, but the itch is so intense now that she has to scratch. I am worried about her damaging her skin but they all scratch and the people who have healed seem to be ok. She cuts her nails very low and doesn't have scratch marks like some people but her skin weeps. I have been wondering if the scratching helps the healing. The reason we have a tickly cough is because the body is trying to get rid of bad stuff and I wonder if the itching, scratching and weeping is a healing process. I have to try to think of it in a positive way because nothing will stop her scratching.

28 July 13
Yes, I agree with you re scratching and infections and it is my biggest worry in all of this. We talked about this with the doctor and Cara knows the signs and can contact him if she needs anything. I just mentioned to Cara your suggestion re gauze and I think she will try it – I will get some tomorrow. We read about this and I think she was a bit worried about the gauze drying on the skin then having to pull it off.
Her skin is so bad at the moment – her arms are swollen and her eyes were very puffy again today. She is weeping from her eyes, ears, mouth, face generally, arms, back and chest – in fact all over. She doesn't complain and it is a bit scary for me at times, but I don't show it because she is coping with so much.

29 July 13
Cara was using a loyalty card to scratch and I was keeping it clean. She then tried a large plastic comb with wide set rounded teeth and has been using that and finds it effective. Night time is worse for her. I usually manage about 4-5 hours’ sleep in total but couldn't sleep last night and she was awake most of the time. She tries not to disturb me, but I have told her to wake me because she must feel desperate. She is sleeping now but will probably be up soon and I am catching up with work.

31 July 13
Attaching a couple of photos from Monday. The photos don't show how red it is. It has spread to her legs and we are hoping it won't spread to her feet. She is still weeping and shedding lots of skin and not sleeping but she is trying to stay positive.

1 August 13
She does have a line on her chest where the redness stops but her torso is gradually filling in. It started with her lower back and is creeping up. She doesn't have blisters – it looks like that, but it is flakes of dry skin and her skin weeps then dries up then weeps again.
Last night after work we watched Jonathan Creek then I massaged Cara's back and arms where she is holding some water. I do it very gently and massage towards the heart. She was very relaxed and managed to sleep more last night so I will do it just before she goes to bed from now on. She feels a bit better today and we don't know if it is the natural course of things and a flare is dying down a bit or if anything we are doing is helping. It is 8 weeks today since she stopped using topical steroids. There are millions of prescriptions given out each year for topical steroids and 1% hydrocortisone and Eumovate are available over the counter, but relatively few people around the world are going through withdrawal it seems and I just wonder what will happen in a few years’ time as more people find out about it.
Have just been to Sainsbury’s and it is definitely the hottest day so far. Cara hasn't moved much in the last couple of months but because she feels a bit better today, she walked up and down the stairs a few times to help her circulation.

3 August 13 
Cara is on antibiotics at the moment because her skin became a bit infected yesterday.

18 August 13
Cara is in a strange place with this at the moment. Her skin hasn't been weeping for the last couple of weeks, but it has become increasingly itchier and is almost constant. I don't know how she manages to deal with it. The comb is working for her because it isn't breaking her skin, but her skin is extremely dry. I ordered some organic shea butter for her, but it is not moisturising enough and the only thing she can use on her skin to keep it from cracking is petroleum jelly. Cara stopped using topical steroids 10 weeks ago last Thursday and she is staying positive. It has been good to see the blogs of people going through withdrawal who were not in a good place when Cara started and are now starting to see improvements or are more or less healed.

21 August 13
We have got Epsom salts in because some people mentioned it in their blogs and I thought it might be good for Cara further down the line. Sleep is still a problem and we are keeping very odd hours at the moment. We usually get to bed around 1.30-2 a.m. and wake on and off during the night but we are going to try to get to bed earlier tonight because Cara has got her monthly appointment with the doctor at 9.10 a.m. tomorrow and she needs to put petroleum jelly on 1-2 hours before we leave. Can't believe it is a month since we were last at the doctors.

22 August 13 
Cara saw the doctor this morning and her blood pressure was up slightly but still normal so that is good. He was again very sympathetic and interested in what she is doing. She is shedding lots of skin at the moment and he offered her something for the bath, but she insists on not having anything chemical and I think he agrees with her. He said she can contact him if she needs anything and it is so good that he is making a note of everything so she doesn't need to explain the whole thing to anyone else. He also mentioned he had been doing some research and hopefully he will not keep prescribing stronger topical steroids for other patients when their skin condition doesn’t improve. She is going to see him again in a month. She was feeling a bit low yesterday (doesn't happen very often) and was worried that she wasn’t going to heal, but this morning she feels better again after reading a blog post about a girl who is going through TSW. She is around the same age as Cara and there was a before picture of the girl's hand that looked like Cara's does now then her hand after about 450 days and it looks amazing.

23 August 13
Been a bit of a tough week for her this week. Her skin is very red and thick and she is shedding skin constantly and extremely itchy but from reading blogs, this appears to be normal for withdrawal. She also had her monthly appointment with the local doctor yesterday – the only time she goes out at the moment.
I certainly couldn't leave Cara at the moment. People can become suicidal doing this although Cara loves life, but this is brutal, and I don't know how she is coping with it. I will be able to leave her further down the line, but it is so hard to say when that will be.

27 August 13 
Cara is almost at the three-month mark and from what we have read, months three and four are quite bad for other people. I don't know how she is managing to deal with the constant irritation all over.

2 September 13
Cara is not doing too well at the moment. There is not much weeping, but the itching is constant and she isn't getting much sleep. Her skin is incredibly dry and there are flakes of skin everywhere. She is still feeling positive though and her friends are great, keeping in contact a lot.

15 September 13 
We have had a challenging couple of weeks, but Cara has had a few days where she has felt better so is making the most of it.

19 September 13
Just back from Cara's monthly appointment with the doctor and her blood pressure was normal which is good. She had a really bad time a couple of weeks ago and was very worn down but is now going through a calmer period – still very itchy though. Two weeks ago tomorrow, it looked like her skin was infected and she was covered in spots. We got a prescription for antibiotics after 6.00 p.m. from the doctor, but the pharmacy was closed. On the Saturday, I took the prescription into our local chemist, but they didn't have them so had to go to further afield. When I got back (it took 3 hours) her skin looked calmer, so she decided to wait until the following day to take them. Her skin was better the next day, so she didn't need to take them and I’m glad now that there was a delay. I think her immune system is fighting back which is a good sign, plus I think the food she eats is helping. It is handy to have the antibiotics in just in case she needs them in the future (hopefully she won't). I have had a bit of a bad back and have decided to wash Cara's pyjamas twice in the washing machine because I think washing and rinsing them in the bath first before putting them in the machine was putting a strain on my back. I will see if it works ok.
Cara is using a large round-toothed comb now which she prefers as it hasn't broken her skin and I think you are right that using the card or the comb has been massaging her and helping to keep the swelling down. It is so difficult to assess how long this process will take because it is so up and down. The weather here changed drastically from very hot to very cold and we have even put the heating on this week. A bit milder today though.

29 September 13 (Cara’s Birthday)
She has had a bit of relief for the last few days and all she wanted to do was read her book today.

13 October 13 
It would be lovely to see you, but Cara won't be able to come out for the moment because it is very uncomfortable for her to wear clothes. She is showing small signs of improvement and is getting a bit more sleep which is great. She is seeing the doctor on Thursday (the last month has flown by).

17 October 13
Cara saw the doctor today and her blood pressure was better – it was a bit low before.

21 October 13
Had a short walk with Cara on Saturday and she went out on her own this morning because her skin is slightly better and she is ok wearing clothes for a short period so that is good.

26 October 13
Cara's skin is looking slightly better and she is sleeping a bit more although the itchiness is severe at times.

31 October 13
Cara is feeling better in herself due to the fact (I think) that she is getting a bit more sleep but her skin is so irritated I don't know how she is coping with it.

26 November 13
Cara is showing definite signs of improvement although she is having problems sleeping again. She didn't go to the doctors for her monthly check-up just over a week ago because it is very cold and too uncomfortable for her to wear clothes, so she cancelled it. She doesn't go out at all and I only go to Sainsbury’s for food, but I had to go to a shopping centre the weekend before last to buy more pyjamas, bedding and towels as we had to throw away the ones we had that were ruined by petroleum jelly. Cara talks to her friends a lot and they have sent her care packages with books and DVDs – they are so sweet. Her friend who she has known from primary school sent her two romantic historical novels by Judith McNaught that she didn't really think she would enjoy but she loved them. On 6 December, it will be six calendar months since she started and it is a milestone we are both looking forward to.

27 November 13
Cara managed to sleep a bit more last night but it suddenly got cold and the heating is making her skin even drier, so we are trying to keep it off as much as possible.

9 December 13 
It is so difficult to know how long this will take. She could be at a point where she will be comfortable enough to wear clothes and go out within a year with the occasional 'flare' or it could be up to two years.

12 December 13
Cara is at the doctors for her monthly check-up this morning and should be back soon. She seems to be having a flare at the moment – skin a bit red and extremely itchy (Cara describes it as a bone-deep itch) and disturbed sleep. We were hoping that it would be a little better in the colder weather but all Cara wears at home is cotton pyjama bottoms and nothing else because clothes are too uncomfortable, so we have to have the heating on more than we would normally. We looked back at the pictures of Cara when she started and they were so shocking, but it made us realise that she is making progress. A lot of people take sleeping pills, pain killers and other drugs but they all have quite a bad time anyway and Cara refuses to take anything. She seems to be better at an earlier stage than most and we don't know if it is down to her not taking medication, good diet, her constitution or luck. Sometimes it is difficult to believe she is going to get better, but the alternative is not good, so she is staying positive.

3 January 14
Cara is showing signs of improvement which is great. We didn't do anything for Christmas and New Year, but we had a lovely time (the first New Year’s Eve we have spent together in years).

9 January 14
Cara is improving and getting some sleep now, but the itching continues. She seems to have made progress compared to other people in some ways, but I now think this will take longer than I first thought. There is no weeping and she is not bright red which is great, but it is all over her body including her legs now and although much better than in the beginning, she is still itchy almost all the time.

12 January 14
Cara is going through a flare at the moment and is very uncomfortable, but we are hoping she will have some normality by the summer and can see her friends again.

10 February 14
Cara is ok but very tired.

18 March 14
Cara is making progress, but the itching is very bad sometimes.

23 March 14
Cara is improving, but has had a bit of a flare and some sleepless nights.

24 March 14
Cara had a bit of a flare from about mid-week last week. She is starting to feel a bit better now and managed to get some sleep last night. We saw a video of an Australian man who is 18 months into TSW and he is more or less healed. We have been following his progress (and others) and it is very inspiring and he looks like a different person.

7 April 14
Cara is not great at the moment – her skin is very itchy and sore and she is very tired. She lost some hair (usual for TSW) but it is growing back so that is good.

16 April 14
Cara is not too good at the moment. She spends most of her time reading as it is the only thing that seems to take her mind off it.

10 June 14
Cara is improving. She is getting more sleep at night which I think is really helping and she has been going for a short walk every day. She is finding the heat a bit overpowering though and our flat is very hot in summer.

11 June 14
Cara is up and down but very positive. She has been sleeping through the night which is huge for her, but her face and hands are very bad at the moment (where she mostly used topical steroids). She lost a lot of hair at the beginning, but it is growing back now and is about an inch long.

15 June 14
Cara is improving but in the middle of a nasty flare. She is able to deal with it because she is getting more sleep and it is localised (hands, face and neck).

19 June 14
We don't have a clue how long this process will last. Cara has always been quite realistic about how long it would take – about 2 years, and I think she might be right. I never thought it would take this long. She is generally better but is in the middle of a bad flare. She is sleeping through the night and her skin is not weeping (which for her was the hardest part to take). Also, she is able to manage the flares better and still feels human (unlike the first few months which were very hard). Her skin is now thicker than it was (before she came off topical steroids, I was very worried about how thin it was) and in places, better than ever which is encouraging.

9 July 14 
Cara's skin is still flaring, though not as bad and is now incredibly dry mainly on her hands, face and neck. The skin is peeling off constantly, but she is starting to look like Cara again. She is not using any kind of moisturiser now because it doesn't help and only makes it worse – lots of people are withdrawing from moisturiser too.

6 August 14
Her back is completely healed and using this as a guide she thinks that because her back was the first place to get intensely itchy, it is the first to heal and she will continue to heal accordingly.
In January, she decided to stop using moisturiser and did it gradually – by March she was not using anything. The worst places now are her hands and ankles but there is noticeable improvement in her face and no puffiness around her eyes. I am starting to believe we don't need moisturiser at all. All these things we put on our body sends messages that we don't need to provide our own moisture. When Cara was little, the doctor prescribed various emollients for her skin (one of them even had sodium laurel sulphate in it!) and when I applied them, her skin always became red and angry and didn't help with the eczema. Plus, it was so uncomfortable for her to be covered in cream under her clothes. I have always had doubts about using emollients for eczema. I think when the body itches you have something that needs to be released just as coughing is the body’s way of trying to get rid of something bad.

20 August 14
Cara is showing signs of improvement :) Her back is completely healed and there is no puffiness in her face. The hair she lost, especially around her hairline, is now about two inches long and will soon blend in with the rest of her hair. She is feeling better too and goes out for a walk most days. The skin on her face, hands and ankles is incredibly dry and flaking constantly, but that should improve soon too.

25 August 14
It has been 14 months (on 6 August) since Cara started. I thought she would be really bad for about 6 months then gradually get better with the odd flare, but she is just coming out of a bad flare that lasted a long time. The good news is she is starting to show real signs of improvement.

23 September 14 
Cara's skin is slightly raised today so it is up and down but generally better.

11 October 14
Cara is going through a bit of a flare but still so much better than before.

25 November 14
Cara's skin is very dry because of the heating – the best time for her skin is spring or early autumn.

4 December 14
She is not doing too well but she is keeping her spirits up. I don't know how she deals with it – it must be so uncomfortable. The cold weather and heating are not helping. I have been inundated with work again this week and am struggling to keep up, but also enjoying the challenge and it stops me thinking too much. We are ok though and Cara makes me laugh every day.

18 December 14
Was up with Cara Tuesday night because her hands and one of her ankles were swollen and painful, but after resting them completely yesterday, they are slightly better.

5 January 15
Cara is slightly better this week :)

6 January 15
I do a short (20 minutes) yoga for beginners I found on YouTube every other night and it is so relaxing I almost fall asleep in the middle of it. It is for relaxation and strengthening your back and I did it initially because I wash Cara's hair over the bath and my back really hurt, but my back is much stronger and I have no problems now.

11 January 15
Cara is making some progress. She is hoping to feel well enough to see 'Cats' at the end of the month with her friend.

29 January 15
She has not been too good for the last couple of weeks. She was supposed to see 'Cats' with her friend on Tuesday this week. My friend offered to drive her to meet him at the Palladium then we would go for a meal for my birthday and pick her up outside after, but she was not well enough even for that. She has been very positive, but it is getting through to her now.

16 February 15
Cara is not doing too well. She seems to be in another bad flare and it is taking a lot longer than I thought. I really don't know how she copes with the constant irritation. Her hands, wrists and one ankle are very bad and then generally bad on her face, neck and arms with patches everywhere else. I think she will start to feel better from the spring when she can get small amounts of sun for vitamin D – that should really help. The people going through TSW who live in Australia seem to do better and I think it must be because the climate is generally better.

8 March 15
Cara is not doing so well. There are times when I am very worried about her and there is nothing we can do about it but wait it out. Also, TSW is a relatively new thing and we don't know the long-term effects of it. Her friends have been great and phone her a lot.

10 March 15
Cara seemed slightly better yesterday, but she woke up today with a swollen hand – hoping it doesn't get infected.

12 March 15
The swelling has gone down and no infection, thank goodness. She was slightly better yesterday so hoping it continues to improve.

24 March 15
Cara's skin is very dry and flaking and her hands and one ankle are very bad – she was going out for short walks and even getting some food shopping when I was busy, but she can't wear her trainers at the moment. I am going to get her some flip flops at the weekend. Small amounts of sun should help heal her skin.

30 March 15
Cara’s skin is slightly better on her body, but her hands and ankle are still quite bad.

25 April 15
Cara is making some progress and is going out for very short walks to get some sun when she can, but her hands and ankle are still quite bad.

6 May 15
Cara has small patches of skin on her hands that look relatively 'normal' and it is 23 months today since she started so looking more positive :)

18 May 15
Good weekend – Cara's skin seems to be improving very slightly each day and her ankle is looking better :)

2 June 15
Cara’s skin is improving and we hope any flares will get weaker over time.

7 June 15
Cara is better apart from her hands, left ankle, neck, face and creases of arms. I think the sun is helping.

2 July 15
It was a very hot night but as Cara's skin is so much better, she was ok with it.

6 October 15
Her skin is just getting better all the time and has never looked this good.

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