Wednesday, 24 July 2013

Do or Die.

I want to thank everyone for your kind words and support <3 it really does mean the world to me! I appreciate and wholly value all the comments and messages you send to me, even if I am a bit slack at replying - sorry! :(

So literally an hour after writing my last post I decided I had better go to the hospital as my legs had turned bright purple and were cold to the touch which scared me as I thought my veins must have packed in! When I got there I ended up seeing a dermatologist I've never had the pleasure of meeting before. Basically she told me that my skin was akin to that of a burns victim and if she could she'd admit me there and then. She said I would die if I didn't get to grips with my treatment as I would lose heat and fluid rapidly through my skin. Being told you'll die if you don't use topical steroids? Just what you want to hear! Not.

She then gave me an ultimatum: I use topical steroids or oral steroids. No and no thank you very much. She said because I'd been scratching myself silly my skin had thickened so the TS wouldn't have a thinning effect... erm excuse me but can you actually see my skin? It is so thin that the slightest touch/ graze makes it pour with ooze and bleed. Yes, areas such as my inner elbows may be thicker but the rest of it certainly isn't! Oral steroids are definitely a no go as they result in herpeticum. The only other option I was given was to go back on Ciclosporin which I was reluctant to do as last time I ended up in hospital after a week of taking it with said herpeticum.

I was told to think about it over night and to see my own consultant in the morning. It was pretty much the same fight when I went to see her yesterday. She said she'd read all the articles on Red Skin Syndrome and didn't find them very credible. To which I retorted that there are support groups with rather a lot of users all going through this very same hell, and I've witnessed people come out the end of it cured. She was having none of it though.

I ended up coming out with Ciclosporin and a higher maintenance dosage of Aciclovir to prevent the herpeticum. She also gave me a drug called Plaquenil, primarily used for malaria patients but has shown to improve inflammation in the skin, which after having read the side effects... just no. I've never heard of a drug with the ability to change your hair colour before... what the hell?! It also lists serious risks like eye problems and even heart attacks as a common side effect if you accidently take too many. No. I was also fobbed off with a topical steroid - Cutivate which she assured me was fine to use because it is one of the newer types and has less side effects. A quick Google search revealed that it is a Class 3 potent steroid (out of 7 classes) and she wanted me to wet wrap it! HA! No!!

Anyway, I've woken up today and had a mass shed and my skin inflammation has calmed down a little. I can only attribute this to the Ciclosporin which I've only taken 3 doses of so far. I see my derm again on Friday so I hope my skin has returned to a healthier state so that we don't end up having a stand off over me not having used the topical steroid.

Fingers crossed eh?


Just to prove how awesome Ciclosporin can be... in only 2 doses

1st image taken yesterday with flash, 2nd yesterday without flash, 3rd today


  1. Jenny
    nightmare! I was told i would 'die' if i didn't use topicals too as i looked and felt just like you do. I had looked like that for 5 months (4 months solid) and no sleep for about a week. I caved in and used the roids (I work as a lecturer and have two kids and no partner so it was a hard road to be on). Going back onto roids was THE BIGGEST MISTAKE I EVER MADE in this long and awful process. i wish I had been strong. I then dabbled with the roids for another few months trying to wean off. No use. Am now on ciclo. I have 150mg twice a day. I have had no side effects. I have not developed any illnesses - not even a cold! I have been on it for almost 8 months. My skin is tolerable - body is fine, just arms, decolletage, neck (argh! the neck!!) and face aren't as good as they might be (sometimes totally hideous). For what its worth I think you are right to say no to steroids, especially topicals. They should be avoided at all costs. i ended up smeared in more topical roids in a week than i had used in the previous 10 years. The derms JUST DONT GET IT. Well done for resisting. i failed to do so. Im sure it set me back - meant the whole previous 5 and a half months of hell was a waste of time and the rebound when I quit again was even worse. Stay strong if you can. Perhaps a mild bleach or salt back will help to keep infection away. Have you had swollen angles yet? If not, that joy is to come... You'll need to be off work.
    As for me: today, at 11:45, i am to have my head shaved. 18 months of steriod withdrawal hell has left me with about a quarter of my original hair quantity. Its stress induced alopecia - Ive had it before but never like this. I look like a freak and feel awful about it. Surely things have to get better? Some people say they wouldn't wish RSS on their worst enemy. I am not so charitable. i would wish it on any doctor who prescribes steroids with careless abandon, especially when we, the patients, tell them otherwise. Perhaps then they would see things differently. And as for the manufacturers ... The CEO of Glaxo is top of my secret list of "people I would like to experience TSW".
    Well, guess I'm feeling pretty cross today. You bet I am! And no, i don't believe the ciclo is to blame for the hair loss - they sometimes give it out for hair loss as a side effect is more hair (not less)! Besides, it would have dropped out straight away, not waited 8 months to do so. Its stress, and no mistake. Stress caused by RSS.
    You GO girl, and say NO to their pesky potent steroid drugs.
    Elaine xx

    1. Oh Elaine your poor, poor thing :( I know Ciclo definitely isn't to blame. I got my eyebrows back from it last time I used it! Though I do understand to a degree the nastiness of hair loss. I lost a lot of hair when on Methotrexate and had to have a hell of a lot of hair cut off and it still looked lank and awful. So sorry that you're having it all shaved though :( *hugs*

      Check out the picture I just added to the post! Can't actually believe the difference 2 100mg tablets have made just overnight. I used to take 150mg twice a day too and this is the 4th time I've used Ciclo in 3 years (crazy!).

      Yesterday I really was toying with the idea of using the steroid ointment (haven't actually got it from the doctors yet) and thinking if Shane applied it to me then it would be better because I wouldn't feel the need to slather it. But you're right. I'm going to stay the hell away. It isn't worth it at all!

      Make sure you look after yourself lovely and I hope today gets better for you xxxxxxx

  2. Thanks Jenny. Your pictures are awesome! I look like your number 2 picture most of the time, and occasionally like number 3. It took me weeks to go from 2 to 3 (of your pictures) when i first started ciclo.
    Thanks for your kind words. Good for you for staying away from the roids too. Just stay away, no matter what those derms say!
    I believe high blood pressure is a major side effect of ciclo. I eat 4 massive fish oil capsules a day. its supposed to be good for BP. Its always been low when I get my bloods done - perhaps the fish oils help. Might be worth a try? Not too expensive either.
    and now ... off to the the hairdresser! E xx

  3. You're so strong darl! Good on you for standing up to the derm, some people really just don't get it. Hope the cyclo keeps doing it's job and gets you over the worst of it.

    Jo xx

  4. Aw Jenny, I am soooo sorry! I am glad you were to ugh enough to withstand the pressure!
    I doubt you would have died, I feel like these docs are a bit dramatic. The cyclo helped you though, what a difference!
    I really admire your strength girls! Keep holding on!

  5. Jenny, you are so strong!!! And brave for posting those pics in the previous post. This is a struggle but you are doing everything right by taking it in stride and refusing to give in to topical steroids again. I hope things are continuing to improve for you!

  6. Just found your blog and I admire your strength to just say no to more steroids. And your courage to show your pics on the internet to let others see what you are going through. I have been on cyclosporine for 3 months and I think I started noticing improvement with my skin after 2 long months. Hang in there!

  7. Hi Jenny,

    I have been reading your site for a couple of months, sorry I have not written anything before now, I am new to blogging and don't really know what I am doing. Do I need to sign in, make a profile, link it to something? it says select a profile??? I will have to do some research.

    Anyhow many thanks for your blog brave woman, people like yourself and Kitty keep me going, I have been steroid free for 3 months after 45 years of using them. I instinctively gave them up before a holiday to Ireland this August on my return I found all these blogs. Amazing.

    Today I go to the Drs and desperately want him to support me with withdrawl but doubt he will. Other Drs just say well if you dont want what we suggest what are we supposed to do? It has been suggested I use Azathiprine I guess similar to Ciclosporine........ So again many thanks for your blog today this is making me think perhaps I will give it a try. All my life I have resisted oral steroids and immunosuppressants but maybe I need to give something a go?

    May I learn to master this itch scratch cycle and love my skin instead.


    1. Hi Breeze, thanks for taking the time to comment & thanks for your kind words :) I'm sorry to hear that you are going through TSW too and I hope your Dr is more understanding than those that I and others have had to put up with. I used Azathioprine for a period myself and didn't find it worked but then everyone is different and many claim it works well for them. I've now stopped using any immunosuppressants because after 3 and a half years of being on different ones (Ciclo, Azathioprine, Methotrexate and Mycophenolate) at different dosages I feel they've done more harm than good to my already deteriorating body from the steroid usage. All I can say on the matter is do what you feel you need to do. It's your body at the end of the day and you know it better than anyone and definitely don't be bullied by doctors!

      I hope it isn't bad for you.

      All the best,