Steroid treatments and long term effects

Hello, I'm sorry to hear about your problem, I have had psoriasis for over fifty years now and I am now seventy two, I was first put on betnovate at the age of eighteen approximately, and I have used it ever since, I must have slipped through all the safety warnings and have never been told by any doctor to stop. I dread to think how much I have used over the years, but I can't say I have any problems because it, a specialist may tell me something different, but they don't have to live with this horrible problem. I always mix it with calcipitrol try it and when it calms down go to something else. I would say you shouldn't have to go through life in pain, but be mindful I'm not a doctor. Good luck 🤞

Hi - steroids conjure quite a lot of anxiety, but realistically it's possible to use them for a long time. Issues are: - If you literally apply it every day the there will come a time - months, years - when they become less effective. - regarding the "getting worse after stopping" it's tricky. You're mostly treating individual skin lesions, not necessarily the disease process itself, so if you have aggressive psoriasis other plaques will emerge while treating and it'll obviously come back when you stop (in mild forms with sparing eruptions, steroids can just clear the plaques as and when, but I doubt a psoriasis forum has much representation from these groups). - systemic side effects of steroids shouldn't be really happening unless you're putting it over a really large area of skin for a very long time. Your body makes ~ 10g of steroid each day and if you were to literally eat a standard tube of steroid cream that's about 1g so... If you are using steroid cream a lot and you still "have psoriasis" while using them, then ultimately their effectiveness for you personally at this time isn't ideal - e.g. progression to light therapy is needed (though practically this is difficult). Being covered in guttate to the point of losing hair?!?! That's pretty significant psoriasis and honestly topical therapy for that would be less useful that something systemic. Sorry you're having a crappy time. Are you UK based? Have you seen GP/Derm?

Hi, I’m new to posting on this forum but felt compelled to share my recent experience as I too was in your position of confusion and panic around steroids and how to treat my guttate and scalp psoriasis a few months ago. Apologies in advance that this is long, but I want to share context and as much detail as possible. My dad has suffered from psoriasis all my life (I’m now 26) and when I was around 23 I first noticed a patch on my calve, a patch on my upper right arm and a patch on my lower tummy appear and immediately understood it to be psoriasis. The doctor virtually (as it was COVID at the time) prescribed me a steroid cream and I began to apply it. I will be honest I was young and not well educated on steroids so used them and it cleared the patches up much to my delight. Over the years the recurring patches would reappear along with a couple of new ones but again I’d apply a steroid but sometimes it wouldn’t work so I’d be prescribed a different steroid (N.B remember this observation for further down in my story). For reference, over those couple of years I was prescribed: Enstilar foam, Dovobet, Betacap, Dermovate. I also noticed sunlight and when I was on holiday entirely cleared any patches and I do tan rather well so this was always great. Around 6 months I moved to a completely different city and to a new job which was horrendous and I was chronically stressed, anxious and nervous. All of a sudden around October 2022, my psoriasis flared up all over my body across my legs, torso, back, arms, behind my ears, bikini line and scalp. It was the worst I’d ever seen and I was beside myself. As a control freak I was willing to go to any extreme to ‘fix’ this. I took a York Test and it identified that I was 100% intolerant to eggs, cows milk and goats milk, and 28% intolerant to wheat. I thought cutting this out would be the solution and removed all of this immediately. I cut out everything that even had traces of milk or egg or wheat in. This meant I switched to a lot of Free From products, many of which contain soya and seed oils which people link to their flare ups and after subsequent research, I don’t believe was good for me at all. I also cut out alcohol for 6 weeks. Unfortunately, my psoriasis rapidly worsened and I was covered in red angry sore patches and my scalp would itch, ooze and weep. In January I was absolutely miserable, had spent months reading conflicting information online and was absolutely fearful of steroids so had stopped using the Enstilar foam I’d used previously and was getting nowhere with my GP. My GP actually said to me "everyone has something, if you didn’t have this you’d have rosacea or eczema or something else”…! I was fortunate enough in January to be able to book a private dermatologist appointment which is something that not everyone has access to. It was £220 for 20 minutes but worth every penny and I want to share what I learned during the session. The dermatologist I saw has extensive experience/accolades/academic success within psoriasis specifically and I felt very confident and reassured by her lengthy research and experience of the condition plus reviews from other clients who had been long time sufferers who said her advice yielded positive results. Firstly she diagnosed me as having guttate psoriasis when previous GP’s had only ever said it was plaque psoriasis so her knowledge immediately gave me confidence. I explained I was very cautious of steroids due to to things I’d heard and seen on the internet and she explained and then directed me to do the following: 1) As psoriasis is a condition where the skin regenerates so much faster than the average person, steroids aren’t something to be feared as we want them to ‘thin’ the skin to clear up the plaques/lesions. She acknowledged that in eczema sufferers long term steroid use is more of a concern due to the ‘thinning’ but that it’s not something psoriasis sufferers should be concerned about. 2) She said steroids aren’t designed for long term use, but as a means to bring the flare up under control with regular use initially, and then when the plaques have cleared up, steroids should be used at a reduced rate and as a preventative tool. 3) She introduced me to the concept of 'steroid cycling' which made my previous experience with steroids when I was younger make complete sense and explained why I’d been prescribed different ones when the steroid seemingly ‘stopped working’. Basically, she said that our bodies are very clever and after using a steroid for around 4 weeks, our body and skin starts to learn what the steroids doing and bypass it deeming the steroid cream at that time as seemingly ineffective. To combat this, she directed me to swap between two different steroids (a stronger one and a milder one) every two weeks. This means, the skin never learns the steroid and bypasses it, because by the time it starts to learn, I’ve already swapped to the other. 4) At first I used Dermovate for 2 weeks to bring the plaques flat and smooth applying twice a day to the patches. Then I switched to Enstilar foam for two weeks applying once a day to the patches. Then I went back to Dermovate for 2 weeks with a once a day application, and then back to Enstilar. I was instructed to use Dermovate on any patches I saw that were raised until it goes flat and the Enstilar should be used again. This has completely shrunk all patches beyond belief from what were raised angry red plaques, to shrunken faint pink patches. 5) I was directed that once I have got rid of all patches and plaques from the steroid cycling, I should apply Enstilar foam all over once or twice a week as a preventative. I am not at that point in my journey yet so can’t comment, but want to share that direction. 6) I was also diagnosed with seborrheic psoriasis on my temple and around my nose and prescribed a very mild steroid Daktakort and it’s 99% cleared it up. 7) The flare up triggered severe scalp psoriasis all over and the method to bring this under control has been to sleep in Sebco a coal tar/salicylic acid/coconut oil ointment 2 or 3 times a week. It does smell, but it is effective. I then use a nit comb to carefully descale my scalp, wash and dry my hair, then apply Betnovate steroid solution all over. Again the progress has been unbelievable. I’m by no means there yet, but it use to itch, ooze and weep and be red raw and now the patches have dramatically healed and reduced in size. It’s essential to do the descaling otherwise, the steroid can’t penetrate all the thick crust layers of skin. I wish I could share the videos and pictures I’ve taken of this progress over the past 9 weeks because it has been incredible. As I’d vocalised my concerns around steroids and made it clear I was keen to also explore phototherapy as an alternative solution, she agreed that she thought my skin would be very receptive to phototherapy and has written this recommendation to my GP. I’m currently waiting for a referral to an NHS dermatologist and it is a year long wait before I can even get an initial appointment, let alone start a course of phototherapy which is crazy! So for now, management through steroids, minimising stress and a balanced diet is all I have. I want to be transparent and don’t want to encourage you towards steroid use without also explaining the dermatologists opinions/stance on the link between psoriasis/diet/gut health, and my full holistic approach below. I raised that a lot of the research online suggested links to diet and gut health and in short her stance was that it’s an autoimmune condition and that as it stands, there isn’t in her field a concrete or proven link between psoriasis and gut health. She said that a healthy balanced diet with minimal processed food and refined sugar was important as well as being active for the management of psoriasis, but that really restrictive or specific diets haven’t been proven en masse in a controlled experiment to cure psoriasis. She said that restrictive diets also often lead to more stress which again perpetuates the flare up. She also said if I’d been eating eggs/milk/wheat for all my life and never experienced any other symptoms that my body didn’t react well to or process them (which in fairness I hadn’t), that reinforced that it wasn’t linked with my psoriasis. Personally having read peoples stories on here, I feel there is links to diet and the severity of flare ups once your body is in a state of flare (often induced by illness or stress), but that they’re very individual and different things work for different people. Since going to the dermatologist, I have still continued to research the importance of food, diet, link to gut health and liver health. I respect her experience and years of research on the condition, but I am open to a link between diet and gut health and psoriasis. I now make and drink homemade bone broth most mornings, take probiotics every morning, try and make a homemade smoothie for breakfast (although it’s difficult to always stick to), omega 3 and vitamin d tablets based on my online research, as well as iron and B12 supplements (which blood tests diagnosed me as being deficient in). I now eat foods that have traces of egg or milk in, although I still don’t regularly eat eggs (I’ve had two since last October) or drink cows milk but I’ve had a few slices of cheese pizza for example. I limit my wheat consumption at home but am not excessively strict if I’m out to eat. I have been drinking alcohol on average once every two weeks for social occasions. As I’ve done all of these things simultaneously, it’s hard to pinpoint if and what has helped from a diet perspective, but I can see with absolute certainty that the steroids have completely brought the flare up under control. My boyfriend tends to agree with the dermatologist (who says the root cause is simply genetics and then often an illness or stress triggers a flare up) that there is no link to diet on the basis that when I cut things out it got worse and that the only thing that’s worked are the steroids, however I am of the opinion that steroids are a management tool and don’t get to the ‘root cause’, so it’s important to still consider the possibility of the link to gut health/diet/lifestyle and do things that are conducive to a balanced approach to my body. Basically I will continue to implement the advise and direction from the dermatologist, whilst simultaneously trying to lead as healthy a diet and active lifestyle as possible. I think another big thing for me has been accepting that there is no cure for this currently, and that there is no miracle, but it is manageable. This horrible disease is a vicious cycle because stress causes a flare up, and then the flare up causes more stress and misery however, since January my stress levels have hugely decreased as I’ve got a new job, I’m being less rigidly strict with cutting everything out diet wise so live a more balanced and happy life with my boyfriend and friends, and seeing the steroids results have all helped to bring the flare up under control. Sorry this is long I wanted to give a rounded view as someone who was in your exact position 2 and a half months ago with scalp, face and guttate psoriasis and utterly depressed and let you know that there is hope, I promise x

Wow ecnolan, that is a powerful and positive story that resonates with me and my psoriasis. I’m 64yrs old had a small patch on the back of my head since I was in my 20s and 3yrs ago I started getting patches on my back and calfs. I did the full wheat, diary diet reduction and used the steroids on rotation and the enstiller was particularly effective. However after two years and my skin being like tissue paper from the steroid cream it stopped working for me and my skin deteriorated to the point of it being covered in plaque, cracking itchy hot skin. My wife said it was like walking around the house clearing up a snow storm with the amount of dead skin I produced. The last 12 months have seen me go through the full range of treatments with bad side effects from them all and being so poorly I had to attend hospital as an emergency. My GP has been amazing and told me from the outset that there was great advancement in the use of biologicals to treat psoriasis. I’m now on Amgevita and in the 9 weeks I have being using it my skin is now 85% clear. There is downside obviously with side effects but having been in that horrendous place that people who have not had psoriasis find it difficult to comprehend I do seem to be on the way to recovery. In essence as a young person do look at the alternatives to the creams there is some very good treatments that you should be able to access other than having to use Steroids that as your GP said are not for long term use. I agree with you there is hope but better still there is treatments for this terrible disease.