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Wednesday, 11 February 2015

Still Suffering

Really need to find the charger for my proper camera. My phone is crap at depicting rashes and redness. You can see it in some more than others. I give up.

Rash pretty much covers entire body.


Excoriations on neck





32 comments :

  1. Sorry to see you are flaring. I reckon we Brits should club together and have a TSW sunshine break somewhere hot to escape the British winter. X

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    1. Sounds good to me, though I'm not sure if warmer weather does help me as I tend to come out in hives. Can't win!x

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  2. I'm not sure if you have hot or cold showers but try hot for a bit. I use them to cauterize the wounds. Then the eczema dries up (without moisturiser) and falls away.

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    1. Hiya, I always have hot showers as I feel they help to take away the soreness when my skin is bad.

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  3. Oh Jenny I'm so sorry, you suffer so much :(. What's caused this latest flare do you know? I really hope your skin starts to ease up on you soon :)

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    1. Hi Anon, I'm not sure in all honesty. I think it is more infection but time will tell as I'm taking antibiotics and antifungal meds. I hope it eases up too :( so fed up.

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  4. Hey.
    What struck me immediately was how long you have been in "cold turkey" and yet how obviously bad your skin still seems to be (sorry hun). The even more curious thing is that I have had bouts of this 'red skin syndrome' myself, but I have never ever attempted cold turkey or even weaning off steroids. In fact I never heard of it until 3 hours ago.
    My question would be, on balance, is it worth it? I've been using topicals for nearly 35 years so given what you know now (after 20 months) would start cold turkey again?
    Thanks, Matt :)

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    1. Hi Matthew,

      The thing about my situation is it is a little more complex than others; I was basically fine until a period in 2009 where I had a rash on my face and was told to use steroid cream on it. It got worse and worse until it was all over my body, and that was just in the case of a few months. A year later I was put on immunosuppressants alongside the steroid creams and orals. So with that in mind my body has been well and truly abused. I had periods of not using immunos over those following 5yrs, however I needed them badly again when I moved city in order to function and not revert back to steroidal treatment. So I have been off and on, off and on and it's no wonder I keep catching infections if my immune system is so completely out of whack.

      In regards to is tsw worth it? Definitely. Or at least in my case anyway. I got to a point where there was nothing to lose because I was in such a state and although I'm still in a bit of a mess it feels somewhat better. I've had a lot of low points but also high ones too. For instance my allergies to cats and dust were so unreal that I would end up in hospital within an hour of being in the environment with acute asthma attacks and full body allergic reactions. This doesn't happen any more and infact my recent iGe levels have dropped dramatically since stopping topical steroidal treatment. That is proof enough I think.

      I know I have a long journey ahead of me, but that is due to what I said previously. I would love to take an all natural route but I'm very much in need of antibiotics and the likes when my skin does become infected.

      Sorry this turned into a mega ramble. Hope I actually managed to answer your question!

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    2. I should also mention - I was literally SLATHERING myself in steroid creams. Massive amounts all over my body up to 10 times a day. It was my kryptonite I suppose.

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    3. It's worth it Matthew as TS suppress your immune system which can make you feel ill. They made me feel very ill for a lot of years. Also whenever I stopped the steroid creams, within a day my face would weep, turn bright red and become infected. Moisturizers make this worse. Now (after pushing past this period) my face is dry and cut but I'm no longer thinning the skin, and I'm giving the skin barrier a chance to heal.

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    4. Hey, thanks for the swift replies.
      I'm really struggling with this subject at the moment, because although everyone who I've seen online in blogs and stories about withdrawal and how hard it was and how its the best thing they've done, I haven't seen one person who is eczema free. One said she was in her 5th year and still suffering.
      I have no doubt that topical steroids are bad for us and they the skin and have side effects, but I've always (mostly) used them sparingly and apart from the really cold weather (and eating rubbish) my skin has been pretty good recently.
      For me to take a huge risk like withdrawal (with work etc) may be too much.
      Also a common theme is after people have quit the TS they then seem to start a lot of healthy diet and other things, I'm just not convinced tbh. Sorry if I seem pessimistic, I admire your courage and maybe I will consider it. If I do then I'll def make a vlog of it! Matt :)

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    5. Hi Matthew, I know of one person living not so far away from me who healed in 9 months and she was eating whatever she wanted through her withdrawal to feel comfortable. Now she has healed she has turned to health and fitness but only now she is eczema free, otherwise she was a large advocate of just doing what you need to do to get through withdrawal. She made some videos on Youtube so you can search for 'Nina Sloan'. In honesty I think getting into health & fitness when you've got through this hell is probably part and parcel of what needs to be done in order to keep eczema in check. You have to remember steroids and other drugs only mask the symptoms and don't aid the cure.

      If you are able, you should definitely consider doing it. Even if you have to do what I and many others have done and take immunosuppressants so that you can still work.

      All the best Matt.

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  5. Argh Jenny I'm so sorry! Glad to hear the IGE ratings went down though.... hope you are able to somewhat function like this. TSW is just awful.... hang in there

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  6. Hi Jenny, did you ever find out about the vitamin/iron deficiency tests you did? :)

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    1. Hey Anon, no I didn't :\ started taking Vitamin D supplements anyway though :)

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    2. How annoying, I hope they let you know the results soon. Good idea on Vitamin D supplements though, do you know if you Iron deficiency supplements are available to? :)

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  7. jenny, the best value vit d i could find was from myvitamins, they use to sell 30 capsules but now only sell 60 or 90 size now, but compared to boots and holland and barret they are a much stronger dose, 62.mcg for £3.79. [plus they do have discount codes and buy 1 get 1 free from time to time] the little round capsules have ev olive oil in them, as i think this helps the vit d absorb better than the dry pills, also sainsburys basics cod liver oil capsules aren't bad when 3 for 2. take care

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  8. Oh dear, I shouldn't have watched this, as I've now just freaked myself out with possibly damaging my skin. Does anyone think I/anyone should take any note of this? https://uk.screen.yahoo.com/lifestyle-videos/often-shower-191224755.html

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  9. Hi jenny,
    Been following your account for a while, I had a six month course of UV treatment last year that worked really well. But since then it's relapsed, the derm has just prescribed methotrexate I just wondered if you knew much about this/had any experience? Thanks

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    1. Hi Anon, thanks for your comment. If you go to the top of my blog there is a search bar where if you type in 'methotrexate' it should yield results on posts I've done on the subject. I know a lot of people who do get on well with it, but for me it induced hair loss pretty early into taking it so I couldn't carry on, for fear of turning bald! All of these drugs with scary side effects need to be taken into consideration before you take them. Hope this helps.

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  10. Thanks for that! Can you remember what dosage you were on? This is the first time I've been prescribed immunosuppressants and the derm thought this would be the one with the least side effects so I guess I'll have to wait and see!

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    1. Think I started on 2.5 and increased to 10. All immunos are risky. You have Methotrexate which is a chemotherapy drug, Ciclosporin which is used in transplants... it's terrifying really.

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  11. Hi Jenny, how's your skin? I hope all the infection/flare has cleared up? :)

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  12. Have you had lots of antibiotics? They cause eczema by destroying the gut lining which in turn causes undigested food to leak into your blood stream causing all manner of immune responses and problems. I hope things get better for you soon.

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  13. Eczema is very confusing, especially when shopping for products that can help reduce the effects. I'm sorry your skin is flaring right now. There is nothing to be embarrassed about it, as we all have skin conditions that are never normal. As my son has a mild skin condition that was inherited (I hope it doesn't grow into a higher form) I had to create a lotion that will help his sensitive yet dry skin.

    Please check it out, I would love to send you some products to see how your skin reacts to it as it's all natural and chemical free.


    www.etsy.com/shop/becauseyouareco

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  14. Hi Jenny! I just found your blog a few minutes ago, and I'm not sure how you would take this news, but I may have a solution to your eczema (and everyone else who has skin problems). Short background: I'm currently 16 years old, living in MD, and living with no eczema ever since it was healed by a doctor in NYC about a year ago. I hope you haven't disregarded my post because of my age at this point, but if you are, please just keep reading for a few more minutes!!! The doctor comes from a family specializing in healing skin diseases and he's from mainland China. He speaks Mandarin and Cantonese, so it's not too big of a problem of you have Chinese friends or friends who know Chinese. He also recommends going into his office in person as frequent as possible so he can keep refining the medicine as needed. The treatment depends, but for me, it took roughly about 6-7 months. The price is reasonable at ~$2000 in TOTAL for all the medicine (again this was for ME) since it's a one time fee and my skin completely returned to normal. I don't know the address since my mom has it, but if you email me at parisiangirl1@gmail.com, I can give the address/opening hours. I hope my post will not be thought of as a joke and please, please, spread this to whoever you know has skin problems!!! You can help make their lives better and in truth, because the doctor only charges one time fee and his medicine isn't after the skin is healed, he isn't making as much money and recognition he deserves!!! Thanks for reading this extremely long post haha and I hope I've helped out someone with this! ;))

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    1. Near the end, I meant to say the doctors medicine isn't NEEDED after the skin heals sorry

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    2. I forgot to mention this, but you can try phoning the doctor to see if he can mail the medicine to you in Britain too

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    3. is finally got the address:
      Dr zeng Grand lei
      210 Canal Street
      Rm 510, new York, NY, 10013
      1-646-210-2021

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    4. This comment has been removed by the author.

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  15. Are you a person of Eczema? If so it would shock someone to understand that you get substantial respite from it just by the couple of changes for your day-to-day life-style. I've arranged some tips below, so place them into location right now to begin prospering!

    Moisturize-A lot! Lots of people will state the worst portion of Eczema may be the itching. Well right here's some news, should you keep the skin hydrated enough you are able to all but eradicate that annoying itch. The secret should be to hydrate regularly, and also at the appropriate times. Ideally, 2 times a day after bathing or showering should be. The reason it's done after bathing is so it is possible to secure a number of the wetness through the bath or shower into the skin. To do this, lightly dab yourself which has a very soft towel, leaving skin somewhat damp, then apply the moisturizer straight to the moist skin. It's a little tougher to figure it all in, yet it's certainly really worth the added effort.

    http://tinyurl.com/n58tw9c

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  16. You too can get relief naturally. If you are not familiar with Kyani solutions check it out: http://bbrroocckk.kyaniviral.com

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