Going through Topical Steroid Withdrawal. TSW 29/4/2016. An open and honest account of my TSW journey. Sharing advice to fellow sufferers going through this debilitating condition. instagram.com/tswsteph/
I have only ever hydrocortisone .5-1 percent. I have maybe used 4-6 small tubes over 12 years. I cant tell if I’m currently in tsw or just eczema as it is worse then it has even been. Hadn’t had a flair in about 5 years and used the cream a few times now it’s worse. What are your thoughts?
@locky4809 it depends on how often you used the cream last two months. What happened before doesn't matter. Addiction only forms if you use an ointment each day for a month. If you make 3-4 days off - it won't lead to addiction.
Oh, thank you so much for this video! I am interested in whether I could use steroids again if I wanted to. I am so scared and anxious to use them now. Thanks for making this video.
Oh gosh I totally forgot to do this hahah. Well hopefully that tells you all you need to know, I am healthy and doing great! I will do a video at some point to update on the stopping of the drugs. But all good, no complaints from me so definitely am 'healed' from TSW. x
Needed to see this. I’m constantly looking for reassurance of the stages other people who have gone through topical steroid withdrawal as I’m currently on month 3 and half way through getting to month 4. Thank you for your vulnerability and sharing your experience through this physically and mentally painful journey. As much as TSW has taken away from those of us going through this we gain so much more
Watched from your first video thanks so much for sharing, you have no idea how much is means to people going through tsw to be guided by people who have been through it like yourself. You look fantastic, well done and keep up the good fight.💛
Hi, just wondering if you experienced withdrawal again (or any reaction) after using hydrocortisone again? I'm 3 yrs in and always wondered what it would be like if I ever needed to rely on it!
No I did not experience withdrawal again but bear in mind I am on immunosuppressants so this might have factored into it! Will be continuing to post about my experience as I taper off the medication.
How fantastic!!! I smiled the whole way through this video. I'm four years too! I think we started withdrawal only a week or so apart. It has been such a gift to witness your journey throughout it all and I feel like you're my most similar TSW buddy!! Congrats to you and to us!!
Hi steph, im 41 and been using topical steroids since the age of 4/5 years old , I’ve definitely got some side effects and ointments are becoming much less effective, I’m going onto methotrexate next month and am worried about stopping the steroids as my skin is completely addicted to them , and for a very very long time !!! I’m sure the dermatologist will talk me through this next month but was wondering what your thoughts are ? All the best for the future :)
JoshMKWii hey buddy thanks so much for the reply and the information- I will absolutely look into it , I’m not too enthusiastic about staying on methotrexate long term so thanks so much for the reply :) I wish you all the best for the future my friend :)!!!
Sam Mccarthy thank you! I was on them for 8 years - using progressively more and stronger as the time went on. I also used protopic fora year and had a couple of rounds of prednisolone.
Instead of taking such am awful drug I suggest you look into fasting. It will help with reducing inflammation. There are many different ways to fast so research and find what will work for you. You will inevitably have to withdraw from the effects of methotrexate. Remember....you are suffering because of a pharmaceutical product that was also supposed to help you.
Baby Vlad Hi, thanks for your message. From my research/doctors advice I have found that when you are taking it, there are effects on fertility (as the drug is used in abortions), but once discontinued there is no/very little evidence to suggest that there are permanent effects on fertility. After 3 months off the drug, you are able to begin trying to conceive.
Just my two pence, I have been taking curcumin for this condition, this is not an advert, veridian organic curcumin extract high potency full spectrum 2-3 tabs a day with food, curcumin is the one natural ingredient found to combat il-6, in research, interleukin 6 which is raised for quite a while after cessation of steroids. Self-hacked is a good website, I’m sorry I know your struggling.
Speak to Nat about her experience with methotrexate. She's been taking it for the better part of a decade. You will feel like shit. You will probably psychosomatically shit when it's time to take it. You will have to deal with that. There are ways to deal with it (anti-emetics, or injecting which normally has less side effects). You need to actively manage your treatment and you will need to manage your doctor's surgery to ensure you don't miss doses. Get an NHS prescription card. Much love, and I hope it works for you.
Damn this video hit me! I’m going through the same withdrawal but my skin isn’t anywhere near as bad as yours was so I can’t even bare to imagine what you’ve gone through! Well done for staying strong!xx
very good recovery and your strong. but a lot of people are not. they still give it though. hmms sounds like they do not care if it kills people. they should be a criminal law on this.
Hi Steph - I work for BBC Look North in Hull. I would really like to interview you about your experience with TSW. Could I give you a call about it? Let me know - I've put my email address below. Many thanks, Sarah sarah.walton@bbc.co.uk
Hi Steph, thank you for sharing. Me and my brother are currently going through TSW and it's really encouraging to see someone come so far with healing - you're amazing for enduring everything you have done so far. Thank you for the boost! It's all worth it in the end :)
It's good to hear your story makes me not feel as alone. withdrawal is vry depressing, Well done on a year without. just don't be tempted to go back like I did. Now I have to do withdrawal all over again.
This is amazing and something I really needed to see today, thank you for sharing! I am about 3 months TS/protopic free to date. I was just wondering whether you made any changes to your diet during this process, such as the HCLF vegan presented by the likes of eczema healing org and Rob Stuart? Or if stopping TS alone is enough to begin the healing process? Thanks 😀
Rick Gurney congratulations on making it through the first 3 months, physically I found them the hardest. Mentally, the later months are difficult but surround yourself with good people and keep looking at the success stories. They kept me going! Diet wise, I was dairy, gluten, alcohol and refined sugar free for the first 3 months. Then I got severely depressed and ice cream was the only thing that brought me joy 😂 Dr Rapaport says that diet makes no difference but I do notice that if I'm flaring hard, sugar really makes it worse. Personally I would keep dairy, sugar and alcohol at a minimum, but don't rule them out completely if they make you feel better emotionally! Some people swear by autoimmune paleo, but for me, I didn't have the energy or the capability to be able to prepare food. I do think that time really is the only healer, but you can obviously give your body the tools it needs by eating healthy and getting the right nutrients. I was also extremely low in folate, many others are too. Make sure you eat lots of spinach! Hope that helps! Sorry for the essay 😂
Going through it right now. Havent been brave like u and helping myself with steroid tablets (tried to go cold turkey but pain was unbearable). You look amazing now!
veronica mz sorry to say this, but steroid tablets were what ultimately made me so much worse than just the creams on their own. In my opinion, total withdrawal is the only way to heal. Otherwise your adrenal glands are never forced to work entirely on their own. It is hard but necessary to get your life and health back. All the best x
