Q. Have you always had eczema?
A. I had mild eczema from an early age. I then went on to develop patches of eczema on my face and scalp but nothing major. My eczema didn't become a problem for me until the age of 16 when I met my Father for the first time at my Grandfather's funeral, but even then it subsided and didn't reoccur until January 2009, since when I haven't been able to shake it off.
Q. Where is your eczema?
A. My eczema covers me all over from my scalp to my feet. The only places I don't seem to get it are on my nose, fingers, toes and the soles of my feet. It seems to be most prevalent on my face, neck, chest and arms as it is those places that were first affected.
Q. Why is eczema such a problem for you?
A. What you have to realise is that the skin is the body's largest organ. Having the condition from top to toe means that it is quite difficult to deal with. Every little thing I do affects it in some way and so I find myself unable to do a lot of tasks I used to do such as; cooking, cleaning, going outside, working, carrying out hobbies, and so on.
Q. What treatments have you tried?
A. Steroid creams, emollients, wet wraps, antihistamines, Protopic, Patch testing, IgE testing, Thrush cream, immunosuppressants inc; Ciclosporin, Azathioprine, Mycophenolate Motefil, Methotrexate, Singulair, light treatment, oral steroids, antibiotics, anti-scratch mittens, salicylate diet, chromate diet, avoidance, hypnotherapy, counselling... amongst others which I can't remember offhand.
Q. What medication are you using at the moment?
A. This changes all the time. I try not to use any moisturiser but if I do I try to use natural products. I have also limited my intake of antihistamines and change them up from time to time, but the ones I use are: Hydroxyzine, Fexofenadine, Chlorphenamine. I take Ventolin for my asthma and refuse to take a steroid inhaler.
Q. Are you aware of red skin syndrome?
A. Yes, I believe this is what I am in fact suffering from.
Q. What allergies do you have?
A. Environmental allergies are my biggest with dust mites being the main culprit. I'm also allergic to fur bearing animals including cats, dogs and rabbits and Chromates. I also suffer from heat induced Urticaria.
A History (from what I can remember w/o docs notes)
- Childhood - Hydrocortisone. Oral Prednisolone (for asthma)
- 2001/2 - Betnovate scalp lotion (first started to use hair dye)
- 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.
- Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate
- April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate
- July 2007 - Heat induced urticaria developed
- 2006-2009 - Hydrocortisone/ Eumovate
- 2009 - Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck.
- Jan 2010 - Ciclosporin whilst using steroid creams.
- August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.
- April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.
- Tried Ciclosporin again to no effect.
- October 2012 Tried Azathioprine to no effect.
- December 2012 Tried Methotrexate had no effect but started losing hair so came off it in Feb 2013.
- Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.
- Started TSW May 22nd 2013.
- Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.
- Went back on Ciclosporin but became incredibly poorly.
- August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking Doxycycline for 2 weeks.
- End of August 2013 - Had suspected "TIA"/ "Mini Stroke"
- September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.
- Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.
- April 2014 - Bad case of eczema herpeticum.
- May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)
- Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.
- Ciclosporin helped for a month and then had recurring staph infections.
- May 2015 - Last staph infection *touch wood*
- August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.
Just.........wow!
ReplyDeleteJenny, my heart goes out to you. For the last 7 months, I have listened to people who were looking to just take better care of their skin. A large percentage of that group are eczema suffers, but I would have to say, your case of eczema is the most severe, well documented case I have ever come across.
I always picture eczema as affecting a couple to a handful of areas. I never imagine that a persons entire body could be covered in eczema. And you not only talk about the disease, you talk about the effects on personal, professional, and social life, because of it.
You're brave, to be so candid about yoru condition. I can only assume that you are thinking about other sufferers and want them to get through life as smoothly as possible, without all of the trial and error. You have done it for them.
I really hope the natural skin care industry takes a closer look at severe cases such as yours, so that solutions can be created organically, that have similar results to prescription, but without the side effects.
I wish you the best on treating and minimizing this condition.
Take care.
Naturally Yours,
Fentriss Moore
Just.........wow!
ReplyDeleteJenny, my heart goes out to you. For the last 7 months, I have listened to people who were looking to just take better care of their skin. A large percentage of that group are eczema suffers, but I would have to say, your case of eczema is the most severe, well documented case I have ever come across.
I always picture eczema as affecting a couple to a handful of areas. I never imagine that a persons entire body could be covered in eczema. And you not only talk about the disease, you talk about the effects on personal, professional, and social life, because of it.
You're brave, to be so candid about yoru condition. I can only assume that you are thinking about other sufferers and want them to get through life as smoothly as possible, without all of the trial and error. You have done it for them.
I really hope the natural skin care industry takes a closer look at severe cases such as yours, so that solutions can be created organically, that have similar results to prescription, but without the side effects.
I wish you the best on treating and minimizing this condition.
Take care.
Naturally Yours,
Fentriss Moore
Hello Jenny,
ReplyDeleteHave you tried some complementary & alternative medicine approach such as homeopathy, ayurveda, chinese medicine, colon hydrotherapy, naturopathic nutrition as well as deworming protocols?
One particular point is that, when we are started to check our food intolerances or sensitivities, we do deworming then liver/gallbladder/colon cleansing - to detox our body. A lot of stagnation has happened, a lot of suppression, bombardment with medications, emotional affection; dampness in the body, fungal proliferation ~~ all of these are major factors that reflects to our skin. Bear in mind that kidneys, lungs and colon and skin are the major portal of exit or cleaning mechanism of our body. If any of these systems are compromised, it leads to reaction. Skin is the biggest organ of elimination. Lungs and colon are always equal in terms of reactions and elimination. You will notice, people with asthma is having eczema (or any other skin issues) and vice versa.
It is just a thought we might consider. I have seen it with my patients how they get improvement addressing all these factors.
God bless you my dear. You are such a wonderful and brave woman. My heart and prayers go with you.
Stay safe :)
Hello Jenny! Thank you for sharing your story.I too have eczema. Mine is not as severe as yours, but I do know how debilitating it can be. I don't use steroids anymore...I have transitioned to natural products; handmade soap, Shea butter.I also turned vegan a while ago, and I feel great.My skin feels great. I do have occasional flares up, but they are not as bad. I try to avoid anything that can trigger it. Thank you
ReplyDeleteWarm regards
Thanks for the read. Your a tough one. I have found that my skin reacts instantly (flares in 12hrs) when I consume MSG and/or artificial food coloring. When I stay clear if it...my skin is clear (for the most part). Fight the fight!!!!
ReplyDelete