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Sick, Exhausted and I for the first time in my life not sure what to do.

Posted , 3 users are following.

Oxygen1
Oxygen1

For 45 years now I have had very severe eczema, I spent the majority of my childhood in sick kids hospital. When I came into my 20s and 30s I was doing very well. For the last 8 years I have had some crazy illnesses that I just don't understand.

Now I am in my 40s and I seem to have a pattern of severe inflammation of my skin or lungs and then I am on prednisone for at least 10 months of the year, along with severe painful infections. I have been on methotrexate for a year with the same results. I keep getting cellulitis of my face/ears, candida infections of my ears, shingles and always on my face.

I am so stuck, I have no idea what to do. My GP is not the greatest so I am searching for a new one, but it feels very hopeless at the moment.

Does anyone have any recommendations or experience with this?

Any help is greatly appreciated.

Cheers,

Oxygen. 

0 likes, 5 replies

5 Replies

  • Manuka
    Manuka Oxygen1

    Posted

    Hi, sorry things are very difficult for you recently. Wondering if you've considered whether your worsening skin may be due to topical steroid addiction and worsening health in general may be due to effects of frequent pred?

    Not suggesting you suddenly stop either as that would be dangerous but there are other options if you suspect this may be the problem. It sounds like it might be.

  • Guest
    Guest Oxygen1

    Posted

    I'm sorry.

    Have you tried som dietary lifestyle modifications in the past? Eczema is associated with allergic condtions, and some find benefit from a dairy- and egg-free diet, for instance. This is not to say that I'm an expert, but I believe diet can be an important player also in this chronic condition.

    Bård

  • Oxygen1
    Oxygen1

    Posted

    Hi Manuka and baardmk,

    Thank you for your replies. I appreciate any advice I can get.

    I do believe that topical steroid addiction is a strong possibility. However, for the amount of inflammation in my lungs and skin it's difficult to get past. If my skin was just the issue I would stop using the topical steroids and wait out the dreadful withdrawal. The problem is I can't breath when I have any inflammation, skin or ears or anything seems to go directly to my lungs. I know it's quite traumatic to go off the creams, but I'm wondering if anyone has tried this with lung inflammation? How did they manage? Did they have a backup plan? Etc.

    Prednisone is definitely an issue that I somehow need to address, I believe it is really messing up my immune system. I know it's causing the infections, I have tried Methotrexate and Xolair. Is there anything else I may not have tried yet? Anything that anybody can suggest I will try.

    In terms of diet. I have tried the elimination diet. It did help with some foods. I haven't eaten eggs or dairy since childhood so it made it quite easy to eliminate the usual suspects. I have tried juicing, vegetarian, gluten-free, sugar-free, caffeine-free. Been to a natural path for years and a Chinese medicine doctor to no avail. However, I will try anything...so if anyone can offer a suggestion I would try it.

    I have had an allergy test just recently and it seems I am very allergic to Aspergillus. I just received this information today from an allergist. But, he wasn't clear about how to avoid this or what to do about it. Does anyone know about Aspergillus?

    Thank you so much for your replies.  I really appreciate any advice anyone can give and I am willing to try just about anything.

    Blessings,

    Oxygen.

    • Guest
      Guest Oxygen1

      Posted

      To avoid severe criticism, I'll first post a disclaimer. No, I'm not giving medical advice, and I believe it's often good to talk over these kind of things with professionals when considering drastically changing diet/lifestyle or alternative treatments. On the other hand, trying something else dietwise for a week or two is probably no problem, generally.

      I am no believer in "detox" or so-called "alternative medicine" and there's potential harm in many of those treatments. I'm just offering advice which I believe could potentially be of help, and as I said previously, I'm just a layman.

      I think you maybe should try a very simple elimination diet consisting of white rice, and a couple of fruits, peeled or maybe even cooked.

      Or maybe try a limited fast - which should help lessen the symptoms. Of course this is not a sustainable way longterm to handle any symptoms, but it could provide an avenue to explore possible associations with lifestyle/nutrition habits which is more difficult on your habitual diet.

      The allergy tests, as you may know, are pretty unreliable, so a positive finding for Aspergillus may not mean much. But those molds are known to live on various grains, so maybe think through if certain grains/seeds in your diet could be causing a reaction.

      I have a very mild case of eczema. I've found that many things can cause a reaction, and often the healthiest of things, like spinach, some herbs, raw cruciferous vegetables and seeds(also grains). But I've also found that these things depend on context as well. If it's cooked, amount, what I've eaten it with etc.

      Here's a thread of someone who had success with diet:

      https://patient.info/forums/discuss/a-cure-for-some-maybe--398908

    • Manuka
      Manuka Oxygen1

      Posted

      There's a school of thought that as the skin is the primary organ of elimination and that process is interrupted or suppressed by topical steroids, the inflammation moves to lungs.

      You certainly need to go cautiously. You could usefully sound out people who are going through topical steroid withdrawal who are or have been affected by lung inflammation. Often, oral immunosuppressants like methotrexate, azathriopine or ciclosporin are used to reduce the worst of the ts withdrawal symptoms.

      I don't think it's possible to post links here but sites like the forum of ITSAN (International Topical Steroid Awareness Network) will have relevant threads or you can post your own query.

      And, or alternatively, there is a fb group called topical steroid withdrawal/ red skin syndrome where there will be people willing to share their patient experiences on tsw and lung inflammation.

      Let me know if I can help further.

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