2.5mg of Methotrexate...

...And still doing brilliantly. In fact it feels like with each reduction my skin gets better and better.  I feel fizzy with excitement! I don't want to jinx it by speaking too soon. This journey has been too long and, at times, disappointing to really get my hopes up. But I can see improvements every day and I'm down to just one little methotrexate pill per week!

I was browsing over my old pictures that I took right at the beginning of my journey, when I was still basically on steroids. I can't believe it's the same girl in those pictures - both physically and mentally.

Physically, I can't believe I lived for so long with skin so bad, and just accepted the non-committal and uncaring 'solutions' from ambivalent doctors. Yes, I've suffered a lot these past 4 years, but I took control and I look (and feel) so much better for it. I never thought I would have the skin I have now.

Like pretty much everyone, I was so scared of starting TSW, I think I went through all the stages of grief.  Denial - surely this can't be happening to me? It seems so scary and so serious and I only ever did what the doctor told me to. Anger - god, the anger. I've never been so angry in my life than I used to be in the derm's office. I wanted to shake some sense into pretty much every doctor I saw. Bargaining - taking oral steroids that the doctors pushed on me after 1 week, just out of desperation for relief. Depression - obsessively scrolling through the facebook groups, reading every blog I could find, not leaving my room, cutting contact with people who weren't my TSW online friends, crying in the bath...you name it. BUT finally, acceptance. It took me a long time to fully accept and to shed the anger and depression - I don't think they ever really leave you but they sit on the back burner eventually. I've made my peace with TSW and I'm grateful for the life lessons it has taught me so far.

This is a pretty long and emotional post but I feel that (hopefully) coming to the end of something which has been so horrific, but at the same time so transforming, is worth the extra words.

I plan to post some pictures of my skin soon which I haven't done in a long time. I hope everyone is doing well and that this post gives you all some hope :)

I still receive emails from time to time from fellow TSW'ers and I'm always happy to help/chat, so if you feel like you need a TSW friend (mine have been so helpful!) just drop me an email at sarahecg@gmail.com

S x

Is it worth it?

So, checking in after a long, long break! Things are really so great right now that I forget all about TSW for long stretches of time - something I never thought would happen. I have successfully reduced down to 7.5mg of MTX  a week (down from 20mg a week) and my skin has never been better. There are parts of me I thought would never heal that are silky smooth and total non-issues now. It is magical and, to me, so worth the wait. I am by no means healed, I won't feel comfortable using that label for a long time, and certainly not before I'm finished with immunos. But I feel happy with my progress & hopeful as my 4 year anniversary approaches in Jan 2018!

Recently, a close friend asked me if using steroids was my biggest regret in life. I didn't even have to think about it. I don't regret using steroids. For starters, the decision was not really made by me, doctors have been prescribing the creams since I was 3 months old. But in a general sense, I don't regret my steroid use and subsequent TSW. TSW has taught me a lot of things about my body, about modern medicine and about patience, and those are lessons I will carry with me. I've also met some fantastic people along the way who have supported me, people who are so generous and kind. I feel lucky to have met them! As if that wasn't enough, my skin has never been better and I can finally feel that there is an end in sight. So no, I have no regrets. And YES! It is absolutely worth it :)

As previously mentioned I am a bit rubbish at checking my comments here, so if you want to get in touch just drop me an email at sarahecg@gmail.com

S x

LDN - Low Dose Naltrexone

I'm going to be blogging about starting LDN very soon. I took my first dose yesterday, a tiny dose of 0.5mg because I want to work my way up slowly,hopefully with the aim of coming off ciclo.

I have a lot of time to kill this week before students come back to school so I've been reading a lot of medical reports and watching a lot of video blogs about LDN and found this one very interesting. It explains LDN clearly. It's a little long but I thought I would post it for anyone who is curious about this immuno-regulator.

& here is a shorter video for those who aren't sat at a desk clock-watching all day...

For anyone who is curious or interested in starting this treatment there are a number of very useful facebook groups where you can find lots of information...

Click the links to be redirected

 - LDN and TSW 
 - LDN Research Trust 
 - LDN Users Chit Chat Group

There is a lot of useful information on these sites and so many helpful people there who have reassured any worries I might have had about starting LDN.

I will be sure to update my blog with my progress :)