Tag Archives: Steroid
Topical Steroid Withdrawal Month 19.5
Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn’t getting better so I decided to use it again the other day as I need to be able to work. I’m pleased to say doing this has helped to kick-start it and it is working again.
My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.
She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.
I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren’t trialing it as of yet but I would be a suitable candidate if it came about.
When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren’t working for me any more and to my complete surprise she said “Yes, that can happen.” What?! This is the same lady who said the complete opposite last time I saw her. No doubt she’ll say differently again next time I see her but even still!
I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.
Happy days
Here’s a silly unflattering pic I just took to showcase the paleness:
2 Years Steroid Free
So the day has arrived. I am now 2 years free from using topical steroid creams.
I am however still suffering though. I’m just going to keep this post short and sweet as I have a lot to do today (see: cake), but I can say that even though I’m still having blips and flares (mostly due to infections!) it has still been the best decision I could have made. I was looking at some of my old photographs and even though I still get blotchy rashes from time to time they are no where near the same in their formation.
Day 487 – Day 517: Month 17 Topical Steroid Withdrawal
These bumps appeared out of nowhere and felt kind of hot. |
The wrinkles are part of the healing. |
Grocery store lights are the worst when I’m flaring. |
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Wearing a little makeup. Skin was very calm. Still have wrinkles that I think will go away. |
First time in shorts and a tank top in a LONG time. |
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Flaring |
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About as bad as my neck got this month. |
Wrists have improved so much since the cetaphil |
With makeup I looked Like this a lot. FINALLY got my hair cut! |
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LOVE my icepacks after the shower… |
Day 762 – Day 791 Topical Steroid Withdrawal Month 26
Day 549- Day 578: Month 19 Topical Steroid Withdrawal
(9/1/2015 -9/30/2015)
For this month I don’t have near as many pictures. For one, I lost some of them when I had to get a new iPhone. Two, I was super busy getting back to work. This month started out with a bad flare from some stew that I ate. I branched out and paid for it. Hoping that some day I’ll be able to eat again.
DAY 1 AFTER STEW549
DAY 2 AFTER STEW (I always am the worst 2 days after ingesting something)
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EVERY time I go to walmart this happens…. |
I drank some tap water then had a shoot where I sweat. I got hives on my tsw effected areas from it. |
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By the end of my trip, I felt amazon. Skin was feeling so strong. This was right after a shoot. |
Month 22 Steroid Withdrawal
I am nearing my 2 years of withdrawal and still not done yet. I have been taking Vitamin D and Vitamin C with Iron tablets for around 2 months now but things still aren’t running smoothly. I eat a mostly vegan diet with plenty of fruit and veg but there is always room for improvement. I’m waiting for summer to try going mostly raw vegan again as that is when all the nice fruits will be around.
We went for a little getaway on the 16th to the Lake District. I never in a million years thought I’d ever have the enthusiasm and motivation for going on a walking holiday, but I guess these things change. Anyway, no sooner had we arrived I could see the tell-tale signs of infection emerging. For goodness sake. I’m not allowed to enjoy anything am I?! What was more annoying was that we were blessed with dry, sunny days which were perfect for going for walks, but no, I ended up being mostly confined to the cottage. It was a stunningly twee little place though so I was glad we were able to make the most of staying there.
I did however force myself to go out a few times, even though I looked like the undead. My camera has been lovely to me though and you can’t even see that there is anything awry.
I used my drying out and tea tree oil method but it didn’t seem to work as amazingly as it had before, though it did appear to clear the majority. I booked in an appointment to see a doctor on the Thursday evening of our return who prescribed me antibiotics as a standby option. I can tell you, I’m bloody glad I did. Overnight it returned with a mean vengeance. Everything was yellow, swollen and I felt feverish and yuck. So I’m back on the unwanted antibiotics.
The following Monday I had a follow-up appointment with my derm nurse at the hospital. She essentially told me that she was drawing blanks with what other treatments I could have as I have tried them all. Ciclosporin isn’t working as effectively as it should be any more and our goals of treatment have changed anyway, seeing as I keep having constant infections again. She wants me to push the idea of biologic treatment and has issued me a fast-track appointment with my consultant derm. I wasn’t supposed to see her until August but now have an appointment for early May. Biologics are new in terms of treatment for AD individuals, and I was actually given the opportunity to go on them over a year ago, but back then I was fed up of being a guinea pig. I could kick myself now, had I known I would regress again. Ho hum.
But yes, unless things get remarkably better with my natural solutions, it looks like I may be forced to take that route. I have been doing a lot of reading and research into Dupilumab, a biologic which is currently being trialed, and have seen good stuff so far.
So yep, this is where I’m currently at.
Oh, and it hardly seems worth telling because it was so minuscule but I also had a small bout of herpeticum earlier this week that originated around my eye. Fingers crossed it is now lessening in severity as after a few days of treatment it disappears. At least something is going right!
I Have Eczema
Day 579 – Day 609 Topical Steroid Withdrawal
Lots of calm this month, but some food flares. Food is ALWAYS the cause of the big flares. Always. The big chunks of days missing just assume the skin stayed the same. Something to note, I photograph a lot right out of the HOT shower. This eccacerbates the redness and inflammation for a bit. Really highlighting the damaged skin. What’s also important to note is after icing and applying makeup, I can appear totally normal most days.
582
I always photograph right after shower. It accentuates the affected areas. |
I cooked something with dairy and then rubbed my face on accident. |
Makeup does wonders… 597 |
My shoulders are the worst skin I have and they are the only place I applied steroid lotion. |
Food flare. Right after shower. SO itchy. SO painful. |
SAME DAY! With makeup! |
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My solders just decided to fall the eft apart. They HURT. |
The next day they’re better |
23.5 Months Steroid Withdrawal Ramble
Hey guys, never fear – I’m still alive!
I’m nearing the 2 year mark! Things still aren’t going brilliantly, I’m still having flares and such and still taking Ciclosporin but overall I don’t have too much to complain about as I’ve been able to go to work and live life a bit. I believe it has been nearly 2 months since my last infection so that’s pretty great going for me.
I have a dermatology appointment at the end of the month in which I was going to inquire about the Dupilumab trials/ other biologic treatment, but I’m still unsure as of what to do. I do however feel I need intervention in order to carry on with my job and such. My goal this year is to be working a different job with full time hours. I’m fed up of being ill and I want to get on with my life’s ambitions, of which have had to be put on hold because of being poorly. Saying this, I’m not sure what my career goals are. I’ve been aiming towards working in an office environment as I think that will be better for my health, but all in all I’m at a loss as to what I want to actually do. I’d love to get into copy writing or some such but not too sure what the preferred route is into such an occupation.
My diet could be cleaner, as I say every time I write a post. I do my best to eat well and reduce my dairy intake, however in the last few months I’ve put on a little bit of weight which I must do my best to shift. Exercising vigorously has still been somewhat of an issue though when I have endured flares so I just do what I can… which admittedly isn’t a lot.
At the moment my face is doing alright, though it was far better yesterday. My arms and chest need a little bit of work and the backs of my knees have signs of irritation but overall I seem to be doing alright. I’ve been mostly pale this week which is good news.
Also my little space on the internet is about to hit a quarter of a million views. That is quite frankly, insane! Thanks to everyone who visits and I’m so happy from reading your comments and emails that I have been able to help so many of you to know that you’re not alone, and to even show people that they may not just have ‘eczema’ any more, you may be suffering from red skin syndrome/ topical steroid addiction. But I will apologise for being distant. I think I’m just going through a bit of a blogging rut, which many people do, but it has been nice to take time out and reflect.
I hope everyone is doing well!
I Have Eczema
Topical Steroid Withdrawal Month 25.5
Hey guys,
I’m now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I’m still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.
About that though, the heat I mean. I’ve done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn’t even get dressed because my skin was that awful. This year, I’m sweating and it’s still horrible and my face and neck have gone rashy but it isn’t anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven’t used the fan to help cool down. Shane has, because it’s been ridiculously hot but I didn’t feel I NEEDED to use it like I previously did. Especially on night times. Hurray!
I have also managed to leave the house sans tights – Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.
In terms of medication, my Ciclosporin has been upped to 350mg a day – 200mg in the morning and 150mg at night. It hasn’t made much of a difference for my face but then I have seen some people say it loses efficacy over time. I’ve been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I’ll have been on this particular course for a year.
I am slightly concerned with it at the moment though. I’ve never witnessed it in the past, but over the year since I’ve been taking it I’ve gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I’ve slowly gone up to 10 stone and having recently upped the dose again (May 2015) I’m hovering around the 10 and a half stone mark. I’m absolutely gutted. I feel and look disgusting.
I’m still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can’t even see my weight gain but that’s because it has all gone to my stomach area so I can hide it to an extent. I’ve been experiencing a lot of bloating lately too. I’m supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.
I’ve already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?
Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven’t had a reply. Not sure what more I can do on that front.
How is everyone else doing?