#eczemablogger

First of all, Happy Easter :) 

Since I last blogged I have been slowly weaning off Methotrexate (immunosuppressants) and on Wednesday 31st March 2021 I was given the go ahead from my dermatologist to try and come off them, which was my goal for my 30th birthday in August this year. After a phone consultation with my dermatologists nurse she reassured me that taking the 1 tablet of 2.5mg Methotrexate per week was probably not making much of a difference to my skin and said it was more than likely a comfort blanket so after discussing this with herself and my dermatologist as said, I am going to give it a go! I have noticed over the past 2 weeks I have been flaring a lot and more frequently however due to those 2 weeks being themed activity weeks at work/school and my class cooking a lot of cakes and chocolate (which we ate) I am putting it down to poor diet and also anxiety of no longer having to rely on the immunosuppressants and the worry of what’s to come as it leaves my system, which could take up to 6 months. I also think the change in the weather makes a big difference too and have noticed that whilst I am at work indoors that my skin does go quite red and dry which I am putting down to the dry heating maybe?

These photos were taken a few days ago during an inflamed and itchy flare up around my neck, face and arms. These seem to be the only stubborn areas that I suffer with the most and I am unsure if this is due to the rubbish eating I did or if this is the start of the Methotrexate leaving my system and what I am hoping to be the last of the Topical Steroid Withdrawal as unlike in the beginning when I was red and flaking head to toe, I only suffer redness around those stubborn areas and the dryness has subsided. Those stubborn areas are where I had severe eczema as a child so it may be that these area are the areas that will remain now that I am no longer medicating it and have withdrawn from topical steroids for 2 years this October.

To help control the flare I have been using Balmonds Skin Salvation and then on the worst and open areas where I have scratched and broken the skin I have been applying a small amount of Savlon or Germolene to prevent any infection and to help stop the itching. As mentioned in a previous blog you can use my discount code SHELL+20 to get 20% your first order at https://balmonds.co.uk 

Just like Balmonds Natural Skincare I am now an affiliate/ambassador for Olsson Haircare, “Designed with sensitive types in mind, our salon performance sensitive haircare collection is particularly suitable for asthma and allergy sufferers. Perfect if you find beauty products tend to make you itch, cause redness or trigger allergic reactions. Recommended by Allergy UK - "Unlikely to Cause a Reaction". Olsson do a variety of products such as Shampoo, Conditioner, Leave in Conditioner Spray, Mousse and Hairspray which is currently their best seller. With the products containing 0% fragrances and colourants and being good for coloured hair too I just had to try it out. Their shampoo and conditioner not only moisturises my scalp but leaves my hair feeling soft and shiny. If you suffer with a problematic scalp then give Olsson a go and use my discount code SHELLEY10 at https://olssonhaircare.com/?acc=10c272d06794d3e5785d5e7c5356e9ff for 10% off your purchases :) You can also go to my Instagram account https://www.instagram.com/shelley91sumner/ for my reviews and highlights on both brands and for regular skin updates.

I will be updating you on how my skin is doing as the weeks and months go by without Methotrexate (if there are any major changes). I am still taking Fexofenodine antihistamines for hayfever, allergies and the itching and also Amitriptyline for my anxiety and sleep, however I am happy to stay on these for the foreseeable to help control my eczema as this is a condition I have had for the majority of my life that unfortunately cannot be cured but can be controlled.

I’d love to know your opinion on medicating skin conditions. Like topical steroids do you think medicating a skin condition like eczema helps or do you think the side effects worsen or are worse than the condition itself? 

For now, Happy Easter.

It’s been around 3 months since my last post and a few things have changed... 

Firstly I have stopped using the eczema journal that I would use to write in everyday about how my skin was, how I felt, what I had eaten and what I had done that day which was to help identify triggers and help improve skin. I found myself constantly thinking about my skin and documenting it, which I could see turning into an obsession and with having it on my mind didn’t break my flare and would sometimes make me worse and with suffering with hair loss due to a change in medication at the time too I just needed a break! Instead I journaled my general positives, negatives and goals for each week and month which gave me things to aim for and reflect on. I have also started meditating before bed to try and break the night time itch cycle using the ‘Insight’ app on android. After stopping the use of topical steroids my skin has improved which has also made a difference to my mental health and quality of life and I am beginning to feel myself, feeling attractive again and have got my bounce back.

I recently saw my dermatologist who is very pleased with the improvements I have made, despite the fact I have stopped steroids and am treating myself for topical steroid withdrawal which he still refuses to acknowledge. I have since had my dose of Methotrexate immunosuppressants reduced from 15mg down to 7.5mg (6 tablets down to 4 tablets per week). I would like to continue to reduce my dose of immunosuppressants and eventually be off all medication to control my eczema but this is just the beginning of that road. Methotrexate is an immunosuppressant that has to be taken at the same time every week and folic acid is to be taken days later to cancel out the side effects and blood tests are carried out once every 6 weeks to record liver and kidney functions. Being a nearly 29 year old woman with a dream of starting my own family, Methotrexate is a drug that I do not particularly agree with being on as I will not be able to try for children whilst being on the drug as it could harm the foetus and myself and cause a lot of complications during pregnancy, which is why specialists advise that you come off the medication 6 months prior to planning a family to ensure that you are healthy enough to do so and do not put anyone at risk. This is not an issue at the moment and is something I plan in the near future and with the Methotrexate suiting me the option to come off the medication or change my immunosuppressant isn’t in sight yet. 

I am writing this sat in the garden where I have been sat all day enjoying the sun, however my skin has began to react to the heat a little bubbling up. This could also be due to applying sunscreen as my skin doesn’t tolerate it very well. However this is the worst it has been for weeks now purely due to the weather and stress over my current situation so I am pretty happy about that as I am not suffering, just a little rashy and itchy which I can deal with. I try to keep moisturising to a minimal only moisturising all over after a shower/bath then applying creams to the most affected areas which are the backs of my knees, knee caps, creases of my arms and my neck twice a day.

I have found that I don’t get a break from my flares when using prescribed creams from my dermatologist (Cetraben) and feel they give my skin a funny coating that I do not like and find over the counter moisturisers work better for me. I will list the moisturisers that I am currently using below:

Dead Sea Spa Magik Body Lotion from Holland and Barratt - https://www.hollandandbarrett.com/shop/product/dead-sea-spa-magik-silky-smooth-body-lotion-60031043?skuid=031043&brandId=222

Soap and Glory Righteous Butter - https://www.boots.com/soap-and-glory-the-righteous-butter-300ml-10220346

The Beauty of Eczema Calming Cream  - https://www.amazon.co.uk/Moisturiser-Sensitive-suitable-Beauty-Eczema/dp/B081225YRX/ref=sr_1_4?crid=1DJP4OLON6Y8S&dchild=1&keywords=the+beauty+of+eczema&qid=1586618389&sprefix=the+beauty+of+%2Caps%2C407&sr=8-4

As far as Topical Steroid Withdrawal goes I think that I am doing well. The research and information found on ITSAN - https://www.itsan.org/ claims that TSW could last anywhere from just a few months up to years depending on the use period and potency of the topical steroids. I discontinued all use of steroids both topically and orally during October 2019, nearly 6 months ago now and I have seen a massive improvement in my skin colour, texture, sensitivity and also my mental health. My skin tone is now of a “normal” colour, I no longer burn, my hypersensitivity has subsided and I no longer suffer with nerve pain, fevers or cold sweats. The only thing I still suffer with is a slight all over dryness and itching cycle but this has also improved since withdrawing steroids and I hope this continues to improve. I have always suffered with Eczema, also known as Atopic Dermatitis since the age of about 2, so I will never fully heal as this is an autoimmune disease that cannot be cured however I do feel that with the positive attitude I currently have, keeping my mind occupied, not overthinking my flare ups and basically just riding the waves whilst finding products that work for my skin I will continue to improve and control my condition. 

COVID-19: On Monday 6th April I was due to start a new job within a nursery as a full time Level 3 practitioner which I was really looking forward to. I had outgrown the primary school I had worked at for the past 3 years and felt that I had come to a dead end and this took its toll on my skin and my health so making the decision to move on was a start in the right direction for many reasons. Unfortunately due to the pandemic we are currently experiencing this has been postponed and we are in lockdown unable to work, visit our loved ones, see our friends and continue with making the memories we planned. I am struggling through this greatly, but I am not alone so I can only take comfort from that and plod on through this until we all see some light at the end of the tunnel. One person who I missing very much during lockdown due to us living under different roofs is my better half Ben. He has been my rock for the past 4 years that we have been together and has supported me through the darkest of battles with my skin and one thing that has always got me through the pain and the itch has been tickles! If I've had an uncontrollable itch, the only thing that has made that itch stop and stopped me from making it worse is having Ben tickle the itch. This is usually the backs of my legs, creases of my arms, up my back and my neck. It’s the little things we take for granted during times like these and I cannot wait to see him again, to be able to show of my “clearer” skin and have a long and overdue back tickle! 

I hope that my fellow skin warriors are looking after themselves and their skin during this horrible time and that everyone is keeping safe and sane. Please stay home and help flatten that curve so we can all be let lose to hold our loved ones for longer, to make more memories with our friends and look back on this as a distant memory. 

Topical Steroid Withdrawal, or just a severe flare up? Since 2014 I have been battling what my doctor and dermatologist have said is a severe flare up of my eczema. What we still cannot understand, and may not get to the bottom of, is why my skin condition was controllable until I was admitted into hospital with Shingles. I have always used Betnovate, which is a steroid based cream, to control my flare ups.  What we didn’t know until recently is these should only be used for a couple of weeks and then discontinued. However my eczema would return and I would then be re-prescribed more steroids. I was always able to control my eczema and dry skin with moisturisers, such as cocoa butter and aloe Vera lotion.  However returning from hospital after 2 bouts of shingles and not using the steroid creams, my skin became that severe I found myself in A&E at least twice a month after it made me so poorly. My skin would look and feel like I had been burnt, it would be so severely dry that if I was to scratch it would flake, ooze and bleed. Alongside this I would have nerve pains and shake, and also have cold sweats, where I would wear layers of clothing because I felt so cold but my skin to touch felt like it was on fire! I saw various private specialists and was referred to a dermatologist, who I now see every 12 weeks.

*Photos taken in 2015

My skin has picked up and cleared up, however I still suffer. I am currently taking 15mg Methotrexate, which is an immunosuppressant, to calm down my immune system and stop it from attacking my skin whilst it is so aggressive. I am also awaiting skin tests and allergy tests to find out if I have a food intolerance or sensitivity to things within the environment. 

With suffering for so long I have done a lot of research in different skin conditions, allergies and reactions, in the hope of getting to the bottom of this.  One thing that was brought to my attention was Topical Steroid Withdrawal, aka Red Skin Syndrome.

Information from https://www.itsan.org/

“RSS or Red Skin Syndrome, also known as Topical Steroid Addiction (TSA) or Topical Steroid Withdrawal (TSW), is a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema. RSS can also arise from topical steroid use in individuals with no prior skin condition; such as with cosmetic use for skin bleaching or to treat acne, or in the case of caregivers who neglect to wash their hands after applying topical steroids on someone else. Topical steroids are also called topical corticosteroids, glucocorticosteroids, and cortisone. They come in many different preparations including creams, ointments, oils, gels, and lotions. Some are sold over-the-counter; others require a doctor’s prescription. RSS is characterized by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments. In RSS, topical steroids are effective for a period of time to treat the skin condition. As time passes, however, applying topical steroids results in less and less clearing. The original problem escalates as it spreads to other areas of the body. In the case of eczema, this “progression” is often mistaken for worsening eczema.”

I have done a lot of research on TSW, and have made connections with other TSW sufferers over social media.  Since November 2019 I have made the decision to ditch the steroids, both topical and oral, and withdraw any steroids that may be causing my skin to continue to flare up and prevent any healing. The symptoms of Topical Steroid Withdrawal are:

Before discontinuing steroids:

‘Rebound’ redness between applications

Rashes spreading and developing in new areas of the body

Intense itching, burning, stinging

Failure to clear with usual course of treatment, requiring a higher potency topical steroid to achieve progressively less clearing.

Increased allergic response

After discontinuing steroids:

Skin flushing bright red, resembling a sunburn

Visible and measurable flaking of skin – appears to be ‘snowing’

Oozing exudate

Skin cycling between oozing, swelling, burning, and flaking

Red sleeves: (arms/legs become red and inflamed, sparing palms/soles)

Thermoregulation altered (feeling too cold or too hot)

Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.

Nerve pain, sometimes described as “sparklers” or “zingers”

Enlarged lymph nodes

Edema

Eye dryness and irritation

Skin atrophy (often manifesting as “elephant wrinkles“)

Hair loss: (head and/or body)

Insomnia and altered body clock

Appetite changes

Fatigue

Emotional fluctuations, depression, anxiety

Most doctors, and dermatologists, will not acknowledge topical steroid withdrawal, and claims that discontinuing the use of steroids is the neglect of a skin condition.  However my locum doctor at my doctors surgery backs me 100% with my research and self diagnosis of topical steroid withdrawal.  Although he admits that I have the best dermatologist in my area, he doesn’t agree that I still get thrown steroids into my prescription. Since I have stopped using steroid creams and taking steroids orally my skin has turned a “normal” colour from years of being a red, scalded colour and both the nerve pain, cold sweats and flaking have subsided. I do understand that this could also be due to the new immunosuppressants that I am on but feel discontinuing steroids has made me feel a lot healthier, and on the road to recovery. My current situation with my eczema is that it still dry, and where I have used steroid cream repeatedly in the past I have deep creases that are incredibly itchy, which then causes redness, but as weeks go by they are improving. I suffer a lot with anxiety due to how my skin has affected me physically, and emotionally, but that is also improving alongside my skin. Moisturiser wise I am currently using Cetraben which is prescribed by my GP, after feeling that the epaderm prescribed by my dermatologist didn't suit my skin, then I use Soap and Glory's Righteous Body Butter as an alternative, which I find very moisturising and lightly scented which makes a nice change when having such sensitive skin and not being able to used fragranced products!

What’s next? On the 28th January I have a skin prick test at Birmingham Treatment Centre to identify any food allergies and intolerances that I may have. Then after my 12 weekly appointment with my dermatologist we will arrange a skin biopsy in the hope of finding out anymore as to what is causing my constant flare up. 

I have promised myself for 2020 that I will try not to stress out over my skin, keep calm and try and remain positive whilst focusing on my new years resolutions and goals for this year!