27 years of Eczema

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Hello everyone,

I would like to make a post to those of you out there living with this horrible condition and believe this website seems to be the best.

I am 28 years old and developed Eczema at the age of one beginning with cradle cap as a baby, and to be honest, for years dealt with only E45, at the age of 14 i was classed as disabled with it by the nurses at A&E (ER) as it was so bad i could not move, after tests it was confirmed i had three types of infections, the deepest cuts were so deep you could see the bone beneath as I had gone through the tissue, it was so bad, i was admitted to hospital, since starting high school at age 11, i went through much trauma including severe bullying which included physical violence as I was being called all sorts by the other kids who made out i was contagious and the usual "grandad hands" comment for those that understand having wrinkled hands at a young age, it got so bad i was depressed and suicidal, aswel as dealing with family issues and going through sexual abuse at the time, i was slitting myself open which made it worse, i was in so much pain on the eczema side and with the other stresses of life i was going through i wanted to die, until age 18 when i sat on a train line waiting for a train, only for it to stop as someone had seen me and reported it.

For the past 14 years I have been under the care for Dermatology specialists and in their words last week, I "have had every cream, ointment and treatment available and need to raise the bars" nothing they gave me worked, in fact, I discovered I am actually allergic to almost all the creams they had given me.

The latest?, today I had my first dose of new treatment, an injection of Methotrexate, Methotrexate or MTX as it is also known is an immune-attacking drug generally used for types of Arthritis and Cancer, apparantly, not long after it's release, 5 cancer patients began the drug, all these 5 patients had eczema or psorisis, and all noticed an improvement of their condition, hense how it came in to play with skin conditions as well as arthritis.

WOMEN: DO NOT TAKE METHOTREXATE IF PREGNANT OR THINKING OF BECOMING PREGNANT. Methotrexate is a drug used to abort babies and thus, could terminate your pregnancy or lead to deformities.

After the first dose, within a couple of hours, I felt terribly sick, cold and dizzy, usual symptoms of the medication, I also have Folic Acid to help reduce symptoms, never take folic acid on your MTX day.

BUT! although only small and my body looks like ive had a fight with Michael Myers, my skin feels more moist than dry, I am hopeful about MTX, I cant bear this conditio anymore, even the horrible itch.

Will keep you all posted on progress.

2 likes, 14 replies

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14 Replies

  • Posted

    Hi Martin, I'm glad you are finally finding something that helps you & good luck to you.

    There are other drugs that can help you if you find that MTX doesn't suit you.  Some people take it for years with no ill effect.

     

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  • Posted

    54 years of exzema here!  I have tried EVERYTHING over the years and the cost has beewn extraordinary. Doctors tell me  am allergic to every category yet somehow I live OK. Used to buy everything organic but it made o difference really.

    I Do notice I am  better when on holidays so perhaps I move elsewhere, or as am currently planning- look further into relaxation techniques- perhaps just leass stressed on holidays. With all my knowledge, I used to be able to maintain some health for some periods of time but in latest years nothing I used to do works anymore which is a worry- even prednisone tablets (used to be my lifesaver, now dont break the cycle as easily). Ive tried the big guns medications and Ive tried natural.  Still, I gotta keep trying things as its unbearable living with it. I dont sleep that well cause I itch. Its a vicious cycle once I itch...it gets itchier and I feel worse about myself so I itch more?

    I dont mean to be all doom and gloom but like all who suffer- I wish there was a miracle cure. if anyone has any eye-opening suggestions please share them. Perhaps there is latest research I am not aware of and can read? Perhaps I dont really understand it at all? Please keep me posted....and hoping.

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    • Posted

      Hi Bonnie, totally understand what you say, I think your right about the places we are, I find I'm worse at work, I work at KFC so it's hot, heat makes me sweat which begins the itch, in the cold, it dries my skin which makes me itch, either way we can't win.

      Methotrexate injections day 6: improvements already in healing, skin seems a more natural colour than red, itch has calmed, mainly itch at night and at work, so far so good, side effects are horrible but after this long of pain and suffering with this condition, I can handle it, injection number two tomorrow, will keep posted smile

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    • Posted

      Hi and thank you for your post. I have been on this blog since November when my 16yo boy had the first massive flare up. It seriously pains me to know people, like you, have dealt with this horrible condition for so long. Will you let us know if the eczema comes back a while after you're done with the med? My boy is on his first day of a six day regiment. He's on Medrol 4 mg the generic is methylprednisololone (mouthful). I'm praying he will finally get relief.

      it turned out that the previous doctor prescribed such a powerful steroid ointment and had him use it for so long, that the open wounds he has now are from the med and not the eczema itself. Some doctors should lose their license. I pray you get well. It's long over due. 

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  • Posted

    This is really interesting. i have had eczema all my life, 28 years and have the same issues, Currently being offer this as well but would like to hear about your jouney first as i am really confused about it, Thanks for sharing
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  • Posted

    Hi Martin, I am a fellow eczema sufferer, it's been 33 years now and I'm still searching for a while to alleviate the itch. It doesn't sound like my skin is quite a sever as yours, but out of all of my health conditions, some which would be regarded as more life threatening than the eczema, I would give anything to cure my eczema tomorrow, it's the worst! Anyway, I just wanted to ask if you've heard of Dupilumab? If you haven't then you should definitely look it up, https://en.m.wikipedia.org/wiki/Dupilumab. It's a new eczema drug that has just finished phase 3 trials so should hopefully be available in a year or 2, but the results have been miraculous. I've heard stories of people with life long severe eczema being seeing results in a couple of weeks. Definitely check it out. I'm holding out for it since nothing else seems to help with my eczema. I hope you find some itch relief and keep up the fight!
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    • Posted

      Hi Jimmy, thanks for your message,

      Will definitely look into it, as i put in my previous post, im about to enter week 3 of Methotrexate injections, i was prescribed folic acid to relieve side effects but they made me ill so stopped folic acid, results within 3 weeks are amazing, i am practically clear, itching is still there but reduced, a few patches but for me, i would risk the side effects for the treatment as im constantly monitored, definitely speak to GPs about Methotrexate all eczema sufferers, my dose does up tomorrow and im excited, shame it wont solve my smelly feet issues lol

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    • Posted

      Hi Martin I saw your comment on an eczema forum about Dupilumab, my uncle is on the stage 3 testing and is doing really well. Unfortunately where I live they are no longer doing the testing so I will have to wait until it comes out😢 I'm on cyclosporin ATM but I wouldn't say it's cleared my eczema up but it's not made it worse. If you can get on the Dupilumab trial I would to recommend it.

      Good luck and hope your eczema gets better soon, it's a horrible condition to have and those that don't suffer don't understand how it makes us feel. I had it bad as a child but was lucky to grow out of untill I hit the age of 30 where for 4-5 years I only had it on my face in winter but for the last 3-4 years it's been practically full body and no creams/steroid tablets, light therapy, Chinese medicine, accupunture or immunosuppressant have helped. Not sure what else I can try. I've tried changing my diet but find it really hard to cut out all dairy, gluten, wheat and sugar. I'm not a veg lover and fruit I seem to react to. Anyway sorry for going on, it's nice to be able to message other eczema sufferers.

      Evette

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    • Posted

      I hate veg and fruit Evette, i have a fantastic alternative, its about £21.00 per month for 4 months but it works very well and still gives me my fruit and veg intake, message me if you want to know more x
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  • Posted

    Hello everyone, 

    I have just started week 3 of Methotrexate injections.

    The overall result up to now? INCREDIBLE!, the only remaining eczema is on my face and hands (weather targets!) the rest of my body is spotless, and not only that, it is moist, I am terrified every week sticking needles into myself but if this is what I get, I am very happy to do it, thank you for all your posts.

    PLEASE NOTE: Methotrexate is a very strong medication used to kill away cancer cells and also used to help with Arthritis, please only use my posts as a point of view, seek specialist help before starting anything like this, I have to have bloods done weekly, it is very closely monitored, there are plenty posts where Methotrexate has not helped at all and i am only in week 3, estimated time before any improvement by doctors is 6 months.

    Stick to it, I have also changed my diet, YOU CAN DO IT!, We will evict eczema from our bodies and have a nice happy life, I use to walk around in jeans, jumpers, coat and hood up to cover up my condition, today... I am wearing shorts and t-shirt, I never imaged it, it is changing my life.

    Thank you to you all for the messages of support, and my prayers go out to you all for your recovery from this condition.

    Will continue to update smile

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    • Posted

      I am so pleased for you Martin, long may it continue.  It worked well for me [for a different condition] for 20 months, then suddenly, I could no longer take it.  We are all different.

       

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