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Published On: Nov 17, 2021
Last Updated On: Nov 17, 2021
A diagnosis of topical steroid withdrawal (TSW) can be frightening and confusing. But you don’t have to go through this alone. We asked NEA community members Briana Banos and Linette Roungchun to share the tips and tricks they learned during their own TSW journeys.
Every eczema warrior’s journey is different. However, when it comes to getting through TSW I would advise you to prepare for the worst. Yes, some people can work during the most difficult days of their steroid withdrawal, but most of us are homebound and completely unable to work. Be prepared for the potential loss of income if you’re not able to keep up your job. It’s crazy how expensive it can get to merely exist and heal.
Gather enough evidence (medical history, photos, et cetera) to prove to your doctor that you qualify for disability. Depending on where you live, you’ll want to check out what support is available to you from your government. Third-party support can ease so much of the burden, as financial assistance, food stamps and even reimbursing your family members as paid caretakers may be available to you.
What we experience during TSW is unimaginable, but don’t forget that being helpless while witnessing a loved one in pain is a taxing journey in itself. I guarantee that the harrowing nature of TSW will leave you short-tempered at times, so do your best not to take out your frustration on those who are closest to you and caring for you.
TSW will take away your full range of motion and/or even give you mobility issues. It’s tempting not to move because simple movements can prove to be extremely painful. “Use it or lose it” comes to mind. The best form of exercise for us during this difficult time is walking; it keeps the blood flowing and the lymphatic system functioning.
Figuring out that you may have TSW is already frightening and confusing. Your mind pours over whether eliminating topical steroids is really what’s best for you, especially when that seems to be the one thing every doctor is absolutely adamant about keeping in your regimen. But, once you determine it is TSW that you are experiencing, the true confusion sets in. Where do I go from here? Back in the day, when everyone had to sustain their health alone with trial and error, it was terrifying. Sadly, even now, that still happens. In the suffering, it’s hard to make decisions on what is the next best step for healing. But, there are options in the world of comfort measures and remedies (not cures). Here are a few that I think could be worth exploring:
And good old-fashioned therapies like dead sea salt baths, zinc and rest can be major game-changers. Listen to your body. That is the best you can do.
They seem to be a myth around these parts, but they do exist! I can’t lie: it becomes quite unfair during some visits when a doctor is not being kind or empathetic to your real diagnosis of TSW, but that’s where we are for now. It is just trial and error. And the doctor you end up loving may not even be well versed in TSW, but if they can be there to support you, that is vital. Infections are common during this journey, some needing antibiotics or antivirals to be removed. Not having a supportive doctor can put you in a precarious position.
ITSAN, the International Topical Steroid Awareness Network, has a database where people with TSW are able to relay where certain compassionate doctors are located. It is slowly being built up as time passes. If you know of such a doctor, let them know! It can be a true lifesaver to another fellow eczema warrior.
An enormous amount of focus, when dealing with TSW, tends to be put on the physical pain. However, the emotional rollercoaster that ensues during TSW is intense. You will walk through the valley of the shadow of death, so to speak.
This condition affects so much more than just your skin. Your family becomes involved; your friends and social life take a backseat. If you have a partner, believe me, they are highly connected to your journey. You miss out on so much. You may even lose your job. Dead ends become a familiar site and there are days that will seem hopeless.
Always, always, always reach out if you are feeling like you’ve arrived at the end of your sanity. There are support groups and forums where other sufferers gather to encourage and comfort one another. Therapy is also another powerful and viable option. Never be afraid to ask for help.
Healing is not linear. No one has the same healing path. When expectations begin to form, so does crippling doubt and suffering. Comparing yourself to someone else will not help you. I know plenty of people who were using high potency steroids and were better within two years. I’ve also seen those who had minimal use, with only a low-to-mid potent steroid, and they were on the mend for over two years. Your body is on its own timeframe – no one else’s.
If you are looking for more information regarding Topical Steroid Withdrawal and its telltale signs, do not hesitate to reach out to ITSAN.org or the team here at the NEA. We are here for you. It is never safe to do this alone and you never have to be alone.