Topical Steroid Withdrawal: My Experience Of Immunosuppressants

So happy! It's only been an entire year since experiencing hair loss from using the medication Methotrexate that I can say my hair is finally growing back in! I do wish I could the same for my eyebrows though. Boo!

Methotrexate is an immunosuppressive drug used to reduce inflammation in those suffering from severe eczema when all other lines of treatment have failed. It has a 50% success rate which I personally didn't experience. It's primary use is as a treatment for cancer patients as it halts and slows down cell division, hence the hair loss. It's a pretty hard core drug.

Similarly Ciclosporin, Azathioprine and Mycophenolate Mofetil are also immunosuppressive drugs that I have been prescribed in the past. Out of all of them I have only had success with Ciclosporin. These drugs are usually used for transplant patients and autoimmune diseases such as rheumatoid arthritis, yet like MTX (Methotrexate), they have anti-inflammatory properties that help with eczema.

The only thing with these miracle drugs is that they are so highly toxic to other parts of your body. The side effects are so numerous and you have to take fortnightly or bi-monthly blood tests, blood pressure tests and urine samples to ensure that your insides are intact and functioning correctly.

Personally I would never take these drugs again for my eczema as I have ended up being far, far worse than where I started. These drugs have properties likened to corticosteroids (steroid creams and oral steroids) where although they suppress the symptoms they don't actually cure the problem. Over time the synthetic nature of these medicines can wreak havoc on your body and make you far more poorly than you were to begin with.

I used various strengths of these immunosuppressants over a long period of more than 3 and a half years and found enough was enough when my body was failing to protect itself from countless infections, both bacterial and viral. I was never well and found myself going to see my dermatologist nearly every day or week at least. I was a complete and utter mess and it's all thanks to these horrible drugs combined with the effects of steroids.

I implore that anyone who has eczema to not over use or misuse steroid cream if it is to be used as you will find yourself rapidly worsening and rising up the ladder of stronger and stronger treatments until your last option is immunosuppressant tablets. I must fully stress that I only got proper eczema in January 2009. It was only 1 year later that I was being freely prescribed these toxic drugs after being plagued with countless other treatments that didn't work. It really isn't worth being a guinea pig. Learn from my mistakes and find the solution to the problem. Find out why your skin is bad and eliminate the cause. Don't just try to hide it by masking the symptoms.

I'm aware that a lot of people are now using the likes of Ciclosporin whilst they battle topical steroid withdrawal. I believe that as long as these drugs are used for their proper purpose for a shorter period of time and it aids relief from the effects of steroid withdrawal then that is entirely your choice. I, on the other hand was told to use these alongside steroid creams and when I quit the steroids and used these on their own I experienced horrible constant infections. I'm pleased to say that since stopping them I have had far, far fewer infections that have required urgent treatment.

What are your thoughts on this matter?



*Disclaimer: I am not steroid phobic, I believe steroids have their place within medicine. I just think that they are abused a lot of the time and used as a first line of treatment when it is not always necessary. Also, this is just my personal experience with immunsuppressants.

Photographing Eczema Daily 01/03

So staying true to my word, I have started to take photographs of my skin, seconds after waking up on a morning and just before I hop into bed on a night time. I decided to take the photographs of just my face because even though I suffer with eczema from head to toe, a) it tends to be more prominent on my face and b) I think it would be a bit rude and too much to take full body photographs of myself, especially because a lot of people I know will read this. Not only this, but I'm unable to even wear underwear some days so yeah, a pretty impossible task really...

Beware though, I've taken photos to show just how it is, so there's no Photoshopping and I'm probably blinking or pulling some pained "I've just woken up" or whatever expression as they literally were taken seconds after getting out of bed. This camera also isn't the greatest either. I would use my fancy DSLR but I've lost the charger :(

01/03/2013 Morning Photo

01/03/2013 Night Photo

It isn't too bad in these pictures, my skin tends to pale out when I sleep. I'm guessing that's something to do with my nervous system? But you can certainly see some of the dryness on my face.

The night time photo you can see I'm starting to get a bit blotchy. I tend to be really itchy when I get in from work. I guess it's just being exposed to a level of dust there. But yeah, my hair is a mess from scratching my scalp. Naughty! You can also see some yummy skin dandruff on my black vest top too. The joys of dermatitis.

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I've been taking Mycophenolate for a week now. Can't really report any changes really. I had a bad flare on Wednesday that made me housebound and unable to dress for the majority of the day and my skin has been very dry but I'm going to put that down to the light therapy as that is one of the side effects. I'm back to being a human pin cushion which doesn't exactly fill me with joy. I'm completely used to having blood tests but I'll still forever flinch as the needle goes into my arm. Stupid reflexes.

Hope everyone is doing OK :)

Light Treatment & New Treatment As Of Today 22/2/2013

Since having to abruptly end my course of immunosuppresant, Methotrexate, last month due to hair loss, and the fact that it didn't appear to be working, I have been undertaking light treatment therapy.

For years the dermatologists told me I couldn't try it out because it wouldn't benefit me in the slightest and I'm now beginning to believe it. But when you've tried out all available treatments ranging from the steroid creams, wet wrapping, protopic cream, antihistamines, avoidance, hypnotherapy, immunosuppressants etc. etc. it all becomes a bit wearisome and so gaps that have been missed need to be filled, or at least given a go in this case. We are literally clutching at straws now that I've tried out all the immunosuppresants available so light treatment had to be considered even though we knew there would be risks such as contracting eczema herpeticum again, but thankfully that hasn't happened!!!

So I had my first session at the end of January. I was in there for 21 seconds on what I was told was a  dosage used for babies. The most horrible part of the treatment is not being allowed to moisturise beforehand. So you're literally getting up, putting clothing on, having your treatment, all whilst feeling absolutely awful and dry and just yucky and bordering unbearable. Of course as soon as my treatment is done, I'm racing home and getting in that shower. Bliss!!

...But anyway, my first session wasn't exactly brilliant. I had my session at 11:30am and by the middle of the afternoon my face felt like it was on fire. It was so tight but I didn't really think much of it. An hour or so later I passed a mirror and saw that my skin was SO red on my face and neck. But it wasn't symptoms of sun burn which is one of the side effects, as my nose was completely unaffected, no, it was my urticaria.



Annoyingly, the pictures I took were on my unreliable phone. So I was in fact at the time, much redder and much more flaky & the contrast on my nose was ridiculous.

They told me not to completely rule out the treatment and to try again the following Monday on an even lower dosage for a mere 17 seconds. It didn't seem to be as bad this time, my face didn't flare like it had before, but the dryness of my skin was second to none. I was having to moisturise my face literally every 5 minutes because the absorption was just plain ridiculous. I've only been for a few sessions and this is still happening now. I'm going through a heck of a lot of creams and antihistamines. The skin on my neck actually wept the other night (all over my bedding, yum!) and is generally sore and so very, very dry.

So this morning I went to see my dermatologist to see what the next step was. I'm now back onto immunosuppressant, Mycophenolate. Last time I took this I was only on it for a week as around this time I had suspected glandular fever, tonsilitis, eczema herpeticum and just generally going through a horrible time. Back then I thought the only way to stop these reoccurring infections was to stop taking the immunosuppressants as they do just as they say, suppress the immune system. So hopefully I'll get some respite this time around!

Has anyone had any success with light treatment? I'm very interested in those who suffer from symptoms closer to my own and how it worked/ didn't work for you? Those who it didn't work for, what did you do next?

Immunosuppressants

Sorry for the gap between posting, my mum came down for the weekend so it's been nice to spend time with her seeing as I rarely do get to see her because of my cat allergy.

I thought today I'd talk about immunosuppressants. This medication is only administered to eczema patients if the eczema is unresponsive to typical treatments such as steroid creams, antihistamines, oral steroids and protopic creams. The only thing about immunosuppressants, and the reason they're considered as a last resort, is because they dampen the activity of the immune system and are thus able to suppress the inflammation of the skin. Because they dampen the immune system this means that you are much more susceptible to side effects and infections... as I definitely found out.

I was first put on a course of Ciclosporin in 2010 after waiting for ages to get in to see the dermatologist here at Lincoln. These tablets can take up to 12 weeks to kick in, but for me it only took a matter of 2 or 3 days. My skin became completely and utterly transformed! I could go to the gym, I could do practically anything without my urticaria flaring. I even went home to see my Mum and managed to spend a night in my old bedroom. My skin didn't flare at all but my asthma was unbearable so I knew that would have to be the last of my overnight visits, sadly. But what you have to understand about my cat allergy is, even if I spend a little bit of time near them, or in a house they inhabit, within the next hour or so my skin would flare and my wheezing would become uncontrollable. Any longer, and it's a trip to A&E sadly :(

I remained taking these tablets for approximately 1 year, being monitored fortnightly for blood tests and my blood pressure. Some of the side effects Ciclosporin can cause include damage to the kidneys, cancers, high blood pressure and swollen gums. I did notice that my gums swelled a little and it was after a year of taking the medication that my blood pressure started to rise so I was taken off it.

Azathioprine was the next one they tried me on which did absolutely nothing for me after 12 weeks of being on it. My skin became bad because it wasn't being helped as much as it had with the Ciclosporin, so that was also stopped. They put me back on Ciclosporin at a slightly reduced dosage but it just didn't work for me as it had before. I was distraught. They kept me on it for over a year in the hope that it would start to kick in, but it didn't.

So that brings us to Summer 2012... where at the start of the year I was so ill I contracted the likes of eczema herpeticum and was put on steroids and antibiotics a fair few times as an attempt to control the eczema flares. We were also living in a house that was very damp and it didn't matter what we did, the mould would keep coming back, so enough was enough. I begged my dermatologist for another option. He wanted me to try Methotrexate but to me, the symptoms for that some how seemed so much more frightening than the Ciclosporin and Azathioprine, probably because it is only 50% effective in eczema patients... so we came to the decision to try me with Mycophenolate.

Mycophenolate didn't work either, but then I was only taking it for just over a week. In this week my health had become so bad that I had contracted eczema herpeticum AGAIN and had reoccurring tonsillitis. I also developed hand eczema at this point too. I really was in a low place.

We decided enough was enough with the damp and mouldy house we were living in, as obviously that wasn't contributing any good to my health, and the landlord was seemingly refusing to fix it. We moved into a newer, larger house in the middle of November which although I haven't noticed an incredible difference, is at least permitting me to go to work, which I couldn't in the months between September - November.

It was then in December that my dermatologist won me over to Methotrexate. Methotrexate is usually most used for conditions such as Rheumatoid Arthritis, and I actually know of a couple of people personally who do take it for that and don't have any problems. It was also initially used for cancer patients and it's function is to slow down, or halt the division of cells to reduce inflammation. By January I was beginning to lose quite a lot of hair and it was really upsetting me. I was losing daily what I would probably brush out in a week, so off it I came.

I'm still losing a significant amount of hair even now, and it's been around 3 weeks since I stopped the treatment. If anyone else has experienced hair loss from MTX how long did it take to slow down? I had to get quite a lot of hair cut off as a result because it had just become so fine and lank. I fought back tears when it was getting cut because as he handled it, I could see it was even worse than I thought.

So yes, that's my take on immunosuppressants. I would absolutely love if Ciclosporin worked again. Though perhaps it will do in a couple of years, who knows? Though I admit I don't miss taking the tablets. They're an inch long in size and stink of yeast!!

There was a picture floating about ages ago showing their size on a tape measure, but you can probably get the jist from these!

I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx