I stopped using topical steroids on the 21st January 2019 and used Protopic for the last time on the 30th March 2019.
That’s 701 days or 23 months and 1 day Topical Steroid Free (at the time of writing)
And 633 days or 20 months and 22 days Protopic Free (at the time of writing)
These figures go up every day.
And every day I am so glad I took this decision.
I stood up. I said NO.
And I quit.
Quit the steroids and the immuno-suppressants and any other drugs offered me by my doctor and dermatologist to heal my skin. I’m doing this my way. It has been horrible, brutal and relentless and it’s still going on, but it’s my choice. It has also been an incredible journey, I have seen a lot of healing and learnt so much about myself, my resilience, my strength and my courage to keep going.
It would be easy to get some steroids. God knows my dermatologist would love it if I went back to using them, but I honestly don’t want to. I don’t crave them. I don’t for one second want to go back to that. Every instinct in my body makes me continue with withdrawal, hoping that I’m doing the right thing.
I’m happy with the progress and can see that I am healing.
What’s healed? – symptoms that have gone
- Back – 100% healed
- Chest – 100% healed
- Backside – 100% healed
- Calves – 99% healed
- Feet – 100% healed
- Ankles – 100% healed
- Knees – 100% healed
- Elbows – 100% healed
- Upper Arms – 100% healed
- Legs – Mostly healed
- Constant sweating and over heating
- Oozing and lymph drainage – this has practically stopped. I used to get large itchy lumps that oozed a kind of clear liquid. This hardly happens now.
- The most intense kind of itch, that I had to regularly resort to solid objects to scratch with, has stopped.
On the mend
- Scalp – almost there! Recently some flaking in this recent flare but has been almost healed
- My neck is pretty good. Slightly crepy and wrinkled but continuing to heal
- Left hand – almost healed
- Zingers and nerve pain are intermittent now, only happening occasionally.
- Sleep is so much better. I regularly get over 4-5 hours sleep now which I can function on quite happily. I need more, and sometimes I get more, but for some reason a lot of healing goes on at night and this seems to leave me wide awake and restless. I tend to drop off at around 4-5am and so have a late start when I can and don’t set an alarm. If I do this I wake at 11ish and so get a good chunk of sleep as the sleep I do get is broken, waking often, hot and uncomfortable.
- Face – Still going through TSW. Most issues on forehead, under chin, cheeks and crease from nose to cheeks, around mouth and chin. Heal and flare on a cycle. This feels like the places most affected are those where Protopic was rubbed in; the regular actions and places that I would have focused the cream on, are the places where withdrawal is worst.
- Right hand – for some reason slower to heal than the other
- Backs of knees – hives, itchy but feels like eczema and is manageable
- Lower arms – Flaring, hives and itchy. Heal and flare on a cycle. I regularly wear a tubular bandage or use bandages to dress and protect my arms so they can heal.
Where am I now?
I certainly feel better, but I have just gone into a new period of flare, inflammation, itchiness and then crusting and flaking. It’s nowhere near as bad as it was before but it’s still painful and it’s a bit relentless. There isn’t a period of feeling healed in between at the moment.
And it’s exhausting. I feel constantly tired when I’m flaring like this.
The cycles start with a feeling of heat, redness and inflammation and intense itching, like nothing you have ever experienced before. Sometimes it’s so itchy I can’t eat, make food, work, even read a book. All I can do is sit with an ice pack on my face. This can last hours.
Work is hard because my concentration is shot. but it isn’t as bad as it has been in the past. So I cling to the fact that I am healing. I am getting better. I am still itchy but it’s mostly just my face and it will heal. It will pass. When I think of the things I could achieve if I had all my energy for just daily life! The world better watch out!
Perhaps having a Covid Christmas in Tier 4 restrictions will give me extra time to heal again, take more time out, be more still, and concentrate on healing.
My mental health is good. I feel strong, I feel happy (most of the time). I’m a little lonely, not helped by the continuing spread of the virus and all the isolation that causes, but I enjoy my own company and have lots of daily practises that help to keep on an even keel.
Thank you to everyone who has supported me and continues to do so. It means so much. I will get through this and am hoping that 2021 will be a year of continued healing.
And to all those going through this, it is OK to feel lonely, lost and angry during this journey. It’s OK to not be OK. But promise me you will explore ways to let go of that rage. Be kind to yourself, practise self care and self love. Take time out to heal. Just be a human being… and one day we will all have one massive healed party!
When I publish my two years in withdrawal update I hope it will document more healing and progress made since this blog.
Are you using topical steroids or protopic? Are you cutting out steroids and going through withdrawal? How are you doing?
Have just come across this website after looking up the “super cortisone”. I’m in a desperate place at the mo. There is steroid sitting on the side in the kitchen that I haven’t opened. I don’t want to use it and I’m not going to but it was given to me yet again by the drs after repeatedly saying no to it. All I get is “well we will give it to you anyway”. This makes me so irate and upset.
I was wondering if there is any support that isn’t on Facebook? I have searched relentlessly to find a forum but no luck.
I’m going through TSW and I feel so bloody lonely with it. No one understands either, what it’s like to live with.
I’m now going to read through your posts as I feel like there’s a bit of closeness.
Sorry you’re having to go through and have gone through this too.
Ruth Holroyd says
Hi Terri, there are lots of places you can get support. You should check out ITSAN https://www.itsan.org/, Google that and you’ll find the global charity for people going through TSW. There is also a UK resource, I’m not sure where you live but the information they provide is brilliant.https://scratchthat.org.uk/ I’ll add links when I’m back on my laptop. There is also a lot of support on Instagram. And also a Global meet-up. Are you on Instagram? I don’t have a date for the next one. My dermatologist is always talking about how I can still use Protopic and steroids and I’m determined not to. Nearly two years in and slightly flaring at the moment but no where near as bad as it was in the beginning. I’m always here. Take care. Stay strong. If I think of any more resources I’ll let you know xxx