Homereachomm2021-07-08T14:43:36+01:00

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We did it!! Today MHRA has posted a new drug safet

We did it!! Today MHRA has posted a new drug safety update on the the risks of Topical Steroid Withdrawal reactions to Topical Steroid medication.

Although we still have a long way to go, this is such a tremendous step forward for the awareness of TSW in the UK and this has only been made possible due to the amount of Yellow Card submissions MRHA received. We all made this change happen!

Although our stories of our personal TSW journeys are harrowing, please know just by sharing yours you are able to help prevent TSW happening to others; today is a huge example of that.

Lots of love & cheers from the Scratch That team

World Suicide Prevention Day aims to raise awarene

World Suicide Prevention Day aims to raise awareness of how we can create a world where fewer people die by suicide. There are around 6000 deaths by suicide in the UK every year.

We know that going through Topical Steroid Withdrawal can be one of the most challenging things someone might go through. It is physically painful, emotionally draining and mentally testing. With no diagnosis, prognosis or medical support, it is common to feel alone or hopeless at times.

We carried out a survey back in May to get a sense of the impact of TSW on the mental health of people going through it (or who have been through it previously). From our survey (approx 450 responses) we found that during TSW:

96% had feelings of depression
97% had feelings of anxiety
~51% only had these since starting TSW
39% had sought help
23% had therapy of CBT
16% started taking antidepressants~
58% had suicidal thoughts
12% self harmed

It is normal to have moments of feeling low or fed up with the withdrawal process but you don’t have to suffer in silence. Reach out to those close to you if you can, or to others in the TSW community through Facebook and Instagram. If you think you are depressed and have felt that way for 2 weeks or more, see your GP. If you have thoughts of harming yourself or taking your own life, you can call the Samaritans 24 hours a day, 365 days a year, on 116 123.

TSW does not last forever and things will get better ❤️‍🩹

#wspd #wspd2021

Lauren, USA. 19+ Months TSW.  Youtube Channel: T

Lauren, USA. 19+ Months TSW. 
Youtube Channel: TSW Girl

TSW has been the hardest thing I’ve ever had to go through. And yet while my self-esteem has been at its lowest, my physical appearance has been at its ugliest and abjectly repulsive, there has been beauty. Amid the hours of exfoliation and solitary confinement alone in the bathtub, there has been an exfoliation of my heart. A rough, painful exfoliation of small things I needed to experience happiness day-to-day—all getting painfully rubbed off. My ability to uplift and support others? Gone. My physical appearance? Gone. My eyesight? Mostly gone. My job? Gone. The ability to hold things with my hands. Give and receive hugs. Feed myself. Form a coherent sentence. All of this was stripped away. My raw skin on the outside mirrored the internal pain of being able to offer anyone I love anything but pain and overwhelming need. My life was a working tale of humility and lowliness every day.

But, life never ceases to have meaning. To coin a sentiment from Viktor Frankl (who survived four different concentration camps in Nazi Germany): even suffering ceases to be suffering at the moment it finds a meaning. In his book Man’s Search for Meaning, he says, “Life ultimately means taking the responsibility to find the right answer to its problems and to fulfil the tasks which it constantly sets for each individual.”

So, my daily responsibility was to fulfil the tasks set before me. Get yourself out of bed every day. Try to get yourself as comfortable as you can. Try to eat. Continue to show kindness to everyone. Be patient with the situation. Stay sane as best as you can. Ask for help from God and others. Rinse and repeat.

And while it’s been the lowest point in my life, I can truly say that going through TSW has given me priceless gifts I never could have received otherwise. These gifts have come at a tremendous price, but they are priceless. I now feel like so much more of the person I should be. There is a new strength and resiliency in me, but also a sweet softness in my heart towards everyone. [continued in comments]

Many thanks to @tsw_missmoustring for your submiss

Many thanks to @tsw_missmoustring for your submission!

Monica, 44, Norway. 7 months TSW

My name is Monica Villard Austring and I am 44 yo. I used Topical corticosteroids my whole life (from the age of 10 months probably)- on and off. I needed more potent creams after having children, with eczema spreading to new areas and not responding to TCS.

I started Cyclosporine April 2020 (after trying Toctino). Tried to quit in November the same year - I immediately rebounded after two days off. I panicked as I didn’t know what was happening to me and started taking Cyclo again.

My last pill of Ciclosporin was 31.12.2020 because was promised Dupixent just shortly after. My ears started weeping and swelled immediately after quitting and whole body followed suite in the next few days.

I started Dupixent with no effect (maybe the itching got a bit better) and feeling everything in my body was off and seing others heal without medication I quit Dupixent after 7 doses.

I went home from work 6th of January 2021 because my face swelled and I was hot and cold and damp and very uncomfortable. And have not been back since. Working as a nurse in the ambulance in rural Norway is not beneficial to healing. Long hours in a vehicle, in synthetic clothes, often masks and protective gowns, getting sweaty which adds to the stress, disrupted sleep (48h shifts).

I also stopped my education to become a public health nurse as I was falling behind and that contributed to more stress and the feeling of failure. It was the right decision - but now, 7 months in and doing much better I don’t know what to do as I am not ready to go back into the ambulance. It will not do me good but I can’t be on sick leave for much longer either. [continued in comments)

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