Steroid withdrawal

My 19 year old son is going through steroid withdrawal after years of using 2% steroid cream & other lotions prescribed by his well meaning doctor.

My son is refusing to even use Aveeno cream now, as he is convinced his body needs a total break form using anything. His skin is raw & weeping & his bed is full of dead skin & covered in blood & serum & he has totally lost interest in his college work & cannot function. he also refuses to let me help & says he has been reading blogs by others who have advised him to go completely cold turkey & he will have new skin at the end of it.

I am not so sure, as he had mild eczema before this & I do know it gets worse with heat & stress.

He also keeps telling me he is an adult & wants me to mind my own business, but as a mother it is so distressing to see your son put himself through this.

He has refused to see any doctors, chemist or skin specialists as well.

I would appreciate any advice from anyone who has gone through this & come out the other side, or from parents who have coped, or are coping with children going through this.

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  • I have never heard of anyone being addicted to 2% steroid creams, it just doesn't happen, they're not the kind of steroids we hear about that people get addicted to.

    Your son sounds to me as if he's depressed, which of course affects eczema. If it was me, I would just leave him to it, but, have a word with your GP about how worried you are. If it has never been this bad before, then something (other than stress) is causing it. It doesn't just get that bad overnight and it isn't because of not using creams, especially if it wasn't this bad to begin with.

    My daughter (now 28) has had atopic eczema since she was 6 months old and has had it so bad at times that her skin has split. Steroid creams were prescribed for a week and they worked, with her skin going back to normal immediately after. Hydrocortisone 1% then keeps it moisturised. As an adult she has tried Aveeno and it helped, but it wasn't as good as hydrocortisone. As a woman, of course, she is extremely aware of how her skin looks and feels and I know that any kind of stress or upset affects how it is.

    How about trying to persuade him to start taking a natural aid such as Evening Primrose Oil capsules 1000mg? Or looking into a diet specifically for the skin? You could do that without him knowing! Even squirting a capsule into his food ;0)

  • Thanks for your reply

    But his skin is definitely going through topical steroid withdrawal & I welcome any positive advice.

  • Firstly, can I assure JayneP that steroid cream addiction DOES happen with low potency creams too. Especially if they are used over a large area of skin for many months or years. There have been many cases, especially in children, where people have become dependent on hydrocortisone 1% because of using in high-absorption areas such as around the eyes or delicate facial skin.

    If your son is going through this, one of the most helpful things you can do is be supportive and be there for him. The Itsan site is a great place to get information about the science behind steroid withdrawal and has links to published medical articles on the subject, including the latest one from the National Eczema Association. Itsan work hard with doctors and dermatologists to raise awareness and do not advise individuals to go through this without medical supervision and help. As a member of the coalition of skin diseases, they are working alongside the NEA to spread the message about the danger of steroid cream overuse.

    As for information outside of Itsan or the NEA, quality may vary and some blogs may need to be approached with caution. I write one of the main blogs about TSW at topicalsteroidwithdrawal.bl... and I am very careful NOT to give out advice on my blog. I share my own experiences in the hope that it will enlighten others about the process, but I would never give out medical advice, as I'm not a doctor. Unfortunately, some other TSW bloggers appoint themselves as so-called experts and give out potentially dangerous advice about TSW, such as quitting cold turkey or stopping moisturisers. These type of bloggers make me angry, as their advice could hurt someone.

    I would also like to point out that TSW is a LONG process. I have seen short-term users of mild potency steroids heal completely in as little as 9 months, but this is the exception. Most of us take at least 18 months to heal. I used strong steroids on my face for 15 years and I am now over 3 years into withdrawals. My skin is a lot better and I wouldn't go back to steroids, but I am shocked that the process is taking so long. Your son needs to be realistic that TSW is not a quick fix, but it does yield good results given time.

    In my case, I'm glad I went through TSW, although it has been hard. It really helps to have support from family, so please be strong for your son and help guide him. TSW is an emotional roller coaster. The Itsan forum is the best place to connect with others and I would suggest that you consider joining so that you can chat with other caregivers. I hope your son decides to get some medical support for his symptoms as there are things that doctors can prescribe to alleviate the worst symptoms and he really needs to see what options are available. Since the publication of the NEA article, more doctors are learning about TSW and the best way to treat it. An eminent doctor, Dr Peter Lio who works with the National Eczema association, has started treating TSW patients and hopefully many will follow. In Japan and India, there is much more knowledge about TSW (especially in India due to the use of steroids as skin lightening creams) and there are specialist doctors there who are experts. Hopefully this expertise will trickle down to the medical establishment as a whole and doctors will have a "best practice" for treating patients who show TSW symptoms.

    I wish the best for you and your son and hope that his symptoms improve soon.

  • Thanks for your advice, he does realise it is going to take a long time, but I wanted to hear from others who are going through the same thing & your suggestion of joining a support network make good sense.

  • The Itsan forum is great. Lots of support and good ideas for methods of comfort on there. Also, you will find people in the same situation: e.g. Parents and carers of TSW patients and also those going through college/work during TSW that can help and inspire.

    Hopefully see you over on the forum. My username on there is Louise UK so feel free to send me a message if you need any help.

  • Hi

    Jayne you are so wrong.

    Jamie, your son is on the right track. My daughter went through it after having used .05 -1 % potency

    Itsan.org is a wealth of information and there are a few closed Facebook pages that might help him Nd your family support him though this.

    I have to warn you, going through topical steroid withdrawl or tsw as it's commonly refered to by those going through it, is hell. It's the hardest thing my family has had to endure. My 19 year old at the time , 2012, was bedridden by the effects of her recovering body. Steroids reak havoc and it's a long grueling process to get your health and body and life back. For those addicted to topical steroids and or immunosuppressants it's the only way

  • He hasn't lost interest in college. It's very difficult to stay in school while recovering from topical steroid withdrawl.

    I don't see my previous post...

  • Lol ok there it is. Good luck with the recovery. It's worth it.

    Also, don't expect any support from dermatologist. From the many people I've read since 2012, very very few, maybe 5 that I can think of have found drs supportive of tsw.

    On itsan.org you will find references to 2 drs, one in Beverly Hills and he's helped over 3000 patients with tsw and another in japan.

    Good luck

  • Thanks for your reply.

    My son is adamant to stick to going through this process & I am there for him, whatever it takes.

    I only wish I had realised how often he was applying the cream in the first place ,as he has had Eczema since birth, but it has gotten much worse with puberty & the stress of exams, which he will have to re - sit in the future. The important thing is him getting well again & managing to cope.

  • It could take several years to recover from what steroid creams do. Steroid creams thin the skin leaving the skin in a situation that is easily damaged. I stopped using steroid creams 30 years ago.

    All medicines which have been used for a long time cause addition. The body has adapted to the medicine. So when the medicine is withdrawn there is an effect. Medical consultants are not system engineers and as such do not understand system engineering processes.

    You are going to need to do research on bacterial infection, skin oil. diet and itching prevention. Evening Primrose oil and cod liver oil capsules I take regularly. The evening primrose oil in my case at 1000mg. ASDA sell these.

    My conclusion is the evening primrose oil contains substances that are needed to build the skin oil that skin needs to protect itself from drying out and bacterial infection.

    Mild bleach is useful. Dilute bleach in water. This helps stop itching. When I first started trying mild bleach 30 years ago the medical profession said it cannot work. I found out this method from a local pharmacist whose daughter had eczema. Last year trials were done on mild bleach and it was found to be useful in the treatment of eczema.

    You need to avoid moisturisers. They are a breeding ground for bacteria which can inflame the skin condition no end. Cotton coverings I found helpful.

    Hope this helps

  • John, steroids do much more damage than thin the skin to some people, like my daughter. Google red skin syndrome or topical steroid withdrawl or itsan.org to see what I'm referring too

  • Thanks for the reply. You are probably right.

    I can only talk about things within my own sphere of knowledge and thus can be accurate. What other people say about the issue is outside what I personally know and experienced and so cannot comment on with any accuracy.

    The effects of medical treatment has a range of responses. So over a large group of people you will have some people with one response and some people with another response and even some people with no response at all.

    To this problem you must add the issue of how was it actually used. Some people use the medication very sparingly some people use the medication a lot without realising that this excess use of medication could cause a problem.

    My area of active research these days is in other areas, so I have no time to check the accuracy and reliability of the data that is available on eczema unless it falls in my area of personal experience.

    I have looked up "red skin syndrome". Yes I am familiar with it. This is something I experienced a little of. I did not know that what I had experienced had a name. I am lucky as I had a science education in 'O' and 'A' level biology. I was doing everything I could at the time to avoid using such medication. I have had a quick look at the website

    itsan.org/what-is-rss/. It is well written and gives people the words to use when facing the medical profession.

  • Consider paying attention to his diet as well. His body will be detoxing and needing good nutrition.

  • Thank you

    He has lost some weight, but it is so hard to make him eat much - he is nearly 20 & keeps pointing out he is an adult :/

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