Diagnosis: Atopic eczema
A stolen year of my life
Atopic eczema is basically not really life threatening.
It is more or less one of these skin disease which are annoying and depending on how much you are affected by. It can bring your lifestyle down to a point, where you have the feeling you don’t have the power to fight against it. Life is going on and changing all the time. And if you are persistent enough, you will come out of this black hole you feel like trapped in.
What is atopic eczema?
It is the most individual skin disease ever. It very often starts in early childhood and vanishes when grown up. In some cases also adults are affected by chronically dry skin. Most frequent irritated areas are crook of the arms and back of the knees. However, it can also affect the whole body.
Mostly it can be easily treated with cortisone tablets or cremes. If you are lucky, it helps on the first attempt and you can live symptom free for a long(er) period. My longest period was almost 20 years.
This disease as such isn’t completely understood, but in meantime researchers found out that it is linked to our immune system. Some genes seems to show mutations which influence our immune system. As result the immune system overreacts and causes these painful rashes.
My journey started again middle of 2013. After 20 years with only a few flare ups a year which were treated with cremes like the ones you can buy over the counter in your next pharmacy or with a short period of taking cortisone tablets, which requires a prescription by your doctor.
Now the flare ups came more frequent and were treated in the following months with a light therapy. It helped the first 2 years to bring me over the winter. In summertimes I mostly felt well. However, in August 2016 it flared up to an extent I never knew before. My skin dried out so quickly and constantly renewed. It looked like a sunburn and peeled constantly. When I woke up in the mornings, my bed looked like a sandbox. I couldn’t creme that much to have a relief from the itchiness that came along with.
Because I already suffered from a light osteoporosis they decided to treat me from now on with immunosuppressive.
At that point I had not slept more than 3 or 4 hours a night. I mentioned that regularly, but nobody was really interested in.
I never received that kind of medicine. I trusted my doctors. They have studied medicine, not me. November 2016 they prepared me for getting this therapy and found out during this process, that I suffer from latent tuberculosis.
From my family history I knew, that my dad had tuberculosis beginning of the 70ties. Family (my mum, my brother and me) was treated with the available drugs at that time which should be valid for lifetime.
However, to be on the safe side, I was referred to the specialist and they strongly recommended a treatment with Isoniazid. The most popular drug.
2 months before this treatment began, dermatology clinic has started to treat my skin disease with Methotrexate on 15mg weekly dose.
possible side effects:
„A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.“
Side effects 🙂 Me and side affects? I never had any problems in the past and so I won’t have any with these drugs. That was my naive believe.
I never ever have believed that side effects can be worse than your actual disease.
The result after a few months or so was devastating:
My skin condition turned into worse, I suffered from anxiety. I couldn’t work for about 3 weeks or so and I told the doctors, Isoniazid might not be the best treatment for me. I can’t stand 9 months suffering from anxieties. I never had in mind that the worse skin condition might be related to Methotrexate.
So Isoniazid was replaced by Rifampicin. A shorter treatment for 4 months and I couldn’t believe it can turn worse. Thank god the anxiety vanished after getting rid of Isoniazid. But again, in my sleep pattern nobody was interested in. When I mentioned it, I was referred to additional drugs, like Telfast or Phenergan.
Both reduces the itchiness, however, it hadn’t any effect on my sleep pattern. I slept until 1 or 2 am and then the odyssey started: half an hour here, 15 min there. At the end I had overall 3-5 hours, depending on how exhausted I was. But fresh and having had a good sleep? Dead loss!
But brave as I am, I went again to my workplace every single day.
The combination Rifampicin and Methotrexate turned my skin condition into worse. I couldn’t believe it can get worse, but it did. From that time I couldn’t work and was on sick leave for about 3 months.
Side effects Rifampicin amongst a whole list of others:
• skin itching, rash, or redness
On a certain point the doctor offered me to take me into hospital to get the skin under control. Because of the severeness Methotrexate was replaced by Neoral (Cyclosporin) 300 mg. At this time my weight was 64 kg.
I have often cried for hours in pain, but to stay in hospital was no option for me. I had the strong belief when Rifampicin has ended, then everything turns into good.
End of July the day of my last pill of Rifampicin had come. Juhu!!! Now the time comes to climb the highest heights instead of staying in the deepest hole. And my skin condition was almost good. I started working again beginning of August. I felt well.
At the same time, dermatology clinic decided to halfen the dose of Cyclosporine. The intent was good, as kidneys might be affected on a longer use. I couldn’t expect how fatal this decision would be. The next follow up appointment was booked in dermatology clinic in 3 months time.
In the next 10 weeks or so, my skin condition worsened every day. And from middle of October 2017 I was again on sick leave. Beginning of November Cyclosporin was set again to 300 mg. Nothing changed. Also under the high dose my skin turned only very slow into better. From December the insurance agreed on a limited disability condition that allowed me to stay at home and concentrate on a suitable treatment.
End of February 2018 my skin was not good, but better, however, the blood results showed already that my kidneys are affected by the use of Cyclosporine.
I never will forget the appointment where the doctor told me:
„We will give you another 4 weeks before we have to change the medication.“
I couldn’t believe that it will go back to Methotrexate and this time with 20 mg. But from beginning of April I had to follow this plan. After 2 weeks on Methotrexate my hands flared extremely up on the inside that I wasn’t able to prepare something to eat or driving my car. I was dependent on my son’s helping hand. My GP made an emergency appointment with the dermatology clinic, but when I attended this appointment my hands were good again. I showed them the pictures how my hands looked like, but it seemed it was not of interest. I also told them, that after taking the drug I’m 2 days not able to do anything. I couldn’t go for running errands, I couldn’t go for a walk. I was weak. I couldn’t eat the first 2 days. They only brought it in relation to nausea, but that was not the case. It’s hard to tell your problems and you have the feeling they aren’t interested in. Methotrexate is the cheapest drug, it can help with severe atopic dermatitis and so it has to help. They didn’t even take into consideration that all these might be related to side effects of Methotrexate.
I didn’t want to accept to be so helpless and so I searched for other options to support myself and my skin. I changed my daily cream to coconut oil. It was a good decision. Coconut oil reduces the itchiness. However, all the other cremes I needed a prescription for increased in strengths, but the impact on my skin was low.
And I changed my nutrition. I left wheat, milk and sugar behind me and thought it might bring at least a bit a relief. After 12 weeks I couldn’t notice the slightest change. I had lost 6 kg and was now down to 58 kg, but my skin was still extremely bad. My hands flared up in almost same severeness every 4 weeks. Barely I thought I can do a few things more, it flared up again.
I mentioned that again to the dermatologist but it was simply overheard. My week looked like following:
Tuesday: bad, Methotrexate
Wednesday: bad, barely can’t eat, barely can’t do any activity, skin slightly better
Saturday: slightly worse
After 5 months tortured with Methotrexate, they decided to change the treatment to Azathioprine. A light came up at the horizon.
I read the leaflet and thought: It can only come better. Hope is the last to die.
From day 4 on I suffered from severe nausea and diarrhoea. I lost 5 kg in 5 days. With 53 kg I panicked and stopped the treatment in agreement with my GP. My GP sent a letter (!!!! no email!, no, a letter) as he has no short cut to the specialists. My next appointment in dermatology clinic was 3 weeks later. I did not ask for an emergency appointment, because I know what hassle it is for my GP to get an exception. He has to write a letter.
At the very beginning I thought the GPs are connected with the hospitals to get at least a 2nd opinion or help in emergency cases. No way. It must be done the old fashioned way. Writing a letter and post it. Welcome to 2018.
So I waited patiently for my appointment beginning of November. This time I had definitely no expectations. I was simply desperate. The insurance had told me in meantime I am fit for work and they won’t pay anymore. My savings were all gone and so I used my last available shares to come at least over the next weeks.
But this time I was lucky!
They told me, my atopic dermatitis is really hard to control, but we bring you back on track. We promise. (How often did they tell me this sentence in the last 15 months?)
I got a prescription and a leaflet for Cellcept. I had no idea what it is. It is definitely an immunosuppressive, which works almost in the same way like Azathioprine.
And I thought: Thank you…. I can’t afford to loose another 5 kg.
It turned out, that this drug is exactly what I need. It eliminates 99% of itchiness. That is already half way through. If I won’t suffer from any other unforeseen side effects, it is a last minute goal in the 92nd minute of extra time.
The whole last 15 months could have been shortened, if they had skipped Methotrexate early enough. In my eyes there is no reason to torture somebody so long, only because it is the cheapest available drug.
HOWEVER, I’m back at work after a sheer odyssey and I’m alive.
Thank you to all who helped me to survive this almost darkest chapter of my life.