This is the first post in a mini series documenting the many symptoms of withdrawal. I thought I would start off with elephant skin as I haven't talked too much about mine and at times, it was so bad I couldn't imagine ever having 'normal' skin again. I hope they give anyone who felt the way I did some hope.
Hang on in there, it is a long road but the destination is SO worth it.
Hugs
Cara xxx
*All after photos taken today, Sunday 8th November 2015, with no make up or filters.
EYES
SHOULDER
FOLDS IN NECK
LEFT WRIST
LEFT HAND (Part 1)
LEFT HAND (Part 2)
RIGHT HAND
Please I really need help - I think I am going through this and I dont know how to cope. I am burnign and itching all the time, covered in elephant skin and cant sleep at night. Is there anything at all that helped you get through thiS???
ReplyDeleteOh Zoe, so sorry to hear you are having such a hard time atm :( How far are you into the process? With regards to the itching, try to keep cool as much as possible and also I would roll a glass bottle filled with water that I would put in the fridge and that would take away some of the irritation. Apart from that, I didn't find anything else that helped. Unfortunately the only real help I can offer you is that time is a healer. It takes so long but in the end it's so so worth it. There are also some wonderful Facebook groups with an ever-growing community of people that are all there to help you so I would strongly suggest joining a few of them.
DeleteZoe, know that you will get better. I didn't sleep for the first year but after that, things slowly returned to normal.
Big hugs to you <3
Cara xxxx
My passion is encouraging and pleading that people report any side effects to the drug manufacturers. If people don't, the side effects are reported as VERY RARE. We need all the people on this site and all other sites to report their side effects to as many manufacturers as they have used. My hubby has asthma. We also wonder if you appen to know of anyone who has been successful healing because he can't go off his steroid inhalers sadly. We so appreciate your pics. He just started getting the elephant skin tonite. I feel so bad for him. But I will turn my anger into action and I encourage everyone to do the same. The phone # is on the prescription or OTC bottle. And ask to have an email sent to you so you have record of the medical incident for yourself and if there is ever a class action lawsuit which there are more and more happening. Sadly the stats are what change things. This has been happening for years to so many more people than it should have because not enough people report their side effects to the manufacturers or their doctors.
DeleteAlso report to prescribing doctors in an email for your records. if they respond negatively, report them to the medical board in your state and keep record of that as well. Let's hold them accountable! My husband's
offender is triamcinolone acetonide cream and potentially nasacort nasal spray which also has triamcinolone acetonide. The crazy thing is that I kept saying why did the dermatologist prescribe a huge tub that would treat an elephant. And now he has elephant skin. Hmmmm. So sad. And maddening. We are seeing results with sleep and itch using taurine 1000 mg and Karen Fischer diet avoiding salicylates. We are only 8 wks in TSW and only day 6 of stopping Nasacort spray. Thanks for any info you know about asthma meds.
Your passion is evident and I'm just sorry what you have been through with your husband :( steroid inhalers are a difficult one as I can't of anyone who has used a steroid inhaler sharing their recovery, but that doesn't mean they aren't out there. I think (in my non-medical opinion) that using a steroid inhaler does complicate things, but I'm sure that it will get better over time like anyone else. I'm sorry I don't have people I can offer. Sending love, hugs and healing to both of you xxxxxx
DeleteTHANK YOU FOR POSTING THIS REALLY GAVE ME HOPE. I feel like my situation is weird as I stopped using topical steroids for years now. I always had eczema but my red skin syndrome had never been so serious until lately, which is weird. Awful thick elephant skin making me feel super self-conscious. I thought it would never go away. Seeing how you have such beautiful skin now really cheered me up. Hope my skin would heal up like yours, thank you!
ReplyDeleteThank you for the lovely comment but sorry to hear you have been suffering recently :( I think it's a shame with RSS etc as none of us have a clue what the hell is going on. Because the people that should be helping us are ignoring this condition, we are all left guessing most of the time. I truly believe all of us who are addicted to topical steroids get better so I am sure it is just the way your skin is dealing with it atm.
DeletePlease let me know how you get on and hope it goes away very soon.
Big hugs <3
Cara xxxx
Hi Cara
ReplyDeleteI am having this elephant skin symptom now, so itchy and red too!! Which phrase would you say this would be? Peeling??
I can't help but keep applying e45 as I am so itchy and pain!!! It's hurts even just to move my arms and neck.
Hi Jackie
DeleteI'm not too sure what you mean...? Unfortunately what you've said sounds exactly like TSW and symptoms can be all over the place and not follow a particular format. You've got to do what feels comfortable for you and I really hope you see some improvements soon <3
Big hugs
Cara xxxx
It's really interesting I came across this. Last year my eczema flared up worse than I've ever had and I've been thrown around all the topical steroids, allergy medicines I'm not allergic to and when nothing's worked I started on DUPIXENT. It's an injectable to help supposivly. It's only been a 15 days since I've started but I have seen clearer skin one day but back to all of those conditions hours into it. I'm wondering if you stopped all medicines including allergy medicine or if you went all natural.
ReplyDeleteThank you for reaching out. I have heard quite a lot about Dupixent and I'm sorry it doesn't seem to be working as well as it once did. When I withdrew from topical steroids, that also included immunosuppressants and any other drugs which suppress your system in any way. I wanted a fresh start and for my body to start working again by itself. I am not a medical professional but I do believe that withdrawal should be from everything to really give your body a chance to recover properly.
DeleteI truly hope you find a treatment which works for you.
Hugs
Cara xxxx
Hi cara how long did you use topical steroids and what strength and did you apply any on your face? I applied mometasone for years daily on skin not knowing how strong the cream was now my face is extremely dark and thin and have shiny skin however my nose if clear? I am 2 years to tsw nearly 3 years how long do you think it would take to heal for me after applying the cream years daily on face??
ReplyDeleteHi Joe, to be honest it’s so long ago now that I can only give you a vague answer but I definitely put Hydrocortesone on my face at certain points, although not much as I knew how bad it was. For years I used it on my chin though so I’m not sure if that counts as my neck or face. I cannot possibly give you a time estimate as you can imagine but your face is a high asorbancy area. Big hugs xxxx
DeleteHi just wondering how long were you on steroids? For your tsw to have taken a couple years to recover? My 5 yr old son is goin through it as well.. so im just wondering how long he'll maybe have this till he recovers.. hes been on it for about 5 yrs now:( also if you've use anything norishing/healing on your skin or took anything internally.. nutrition/supplements etc to help with itch and moisture along the way??
ReplyDeletegoodness, I;ve just seen this comment apologies it is so so late!!! It took 26/27 months to recover. A little confused by how long he's been off topical steroids for. Unfortunately, the only thing that truly helps is time. Sending hugs xxxx
DeleteHi, I am having quite bad eczema, not TSW, no burning only itching and dry skin parts but I also have elephant skin, what helps to get rid of it? Any suggestions?
ReplyDeleteIts really difficult because topical steroids won't help this elephant skin of mine.
DeleteHi there, I am a little confused by your messages as if you're on this blog, you'll know I went through TSW. Elephant skin is a symptom of Red skin syndrome and topical steroids won't help it, only time. If you have steroid-inducted eczema, then the only thing you can do is give it time as I found nothing helped. Hugs xxx
DeleteThe co. Medline makes an antifungal cream it knocks down inflammation and helps exfoliate those white skin cells underneath. If used with AHA cream it makes exfoliating easier. When atleast 15 min the itching has started and want to scratch but instead rub back and forth with bare and dry finger or two the skin will let loose the white skin cells. Brush off or roll lint tape to pull them off skin as they burn. Leave on overnight. I dont always mix cause the Medline antifungal cream can do this exfoliate by itself. It has micronizole but is the only one that I found exfoliates. I cut out triggers eggs, sweets, so much more and learned how how eat healthy but the threat of this curse is always near.
DeleteThis comment has been removed by the author.
ReplyDeleteI find grinding sugar into my skin relives the itch without breaking the skin.
ReplyDeleteYou can use a bit of soap or shower gel if it needs some lubrication, but I've been using this method for two months and so far it's worked really well.
Just wash it off after you've finished.
Such a great tip, thank you so much for sharing it!!xxxx
DeleteHow did you cure yourself? Was it through Diet or Change of lifestyle? I read your book and must have missed out something ? Or was it time that cured it? Thanks
ReplyDeleteSorry for my late response! In a lot of the chapters of my book I talk about it all coming down time and nothing to do with diet/change of lifestyle etc. TSW took 26/27 month to get better, and it was very difficult during that time, but eventually it did get better <3
DeleteSending you lots of love and healing xxxxxx