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wife has sufferd Hidradenitis Suppurativa for 5 years

Posted , 4 users are following.

paul33163
paul33163

My wife has suffered from fistulas and abbesses in the groin for 5 years. She has been passed around from one specialist to another specialist she has been finally diagnosed with Hidradentis Suppurativa and her new Hospital consultant has offered her a coarse of infliximab.

There seems a lot of nasty things that can go wrong with this treatment, so has anyone on this forum had this form of treatment?

0 likes, 5 replies

5 Replies

  • donna02629
    donna02629 paul33163

    Posted

    Hi I've not heard of this but I'm the same be to so many hospital appointments. I'm going to try changing my diet I'm going to try gluten free as I had an allergy test and it came up gluten and aspiratine the replacement sugar. And I'm being tested again for coeliac as I have lots of the symptoms. The dermatologist put me on dermol soap and I got bath stuff from amazon which has really helped with the terrible itching. I wish ur wife luck and so nice to hear from a supportive husband

  • lisa23476
    lisa23476 paul33163

    Posted

    Hi Paul

    I've been suffering for over 25 years now

    I've tried influximab but sadly it made no difference to me 😢

    The only thing that I can say gave me a break from them growing as I get between 30/40 a wk I had major skin removal had to have sections done separately as 64% of my body is bad took 3 years under my arms for anything to grow was hard and painful and took 7 months to heal but the pain we go through was worth it

    I seen on here that changes on your diet can work (dark shades )

    So far not found that working for me but has for others

    I've heard humira has worked for others also

    • paul33163
      paul33163 lisa23476

      Posted

      Hi Lisa

      Thanks for you repl

      I wanted to know how a relative healthy person got on with infliximab and adalimumab as my wife had a heart attack back in 1984, which is a long time ago, but in the last two years has develop Arrhythmia (abnormal heart Beat) and she also has COPD.

      Her current consultant seems a bit gun hoe about using infliximab, but I am concerned that some one with those conditions shouldn't have there immune system lowered any more than it is already

    • lisa23476
      lisa23476 paul33163

      Posted

      Hi

      I'm sure I had a test for TB before I had been given it

      And I'm sure that I did blood test quite often

      Yes it makes your immune system low but I always made sure I had my flu jab always bath in antibacterial with I get as a prescription

      Keep your antibiotics going but make sure you get changed regularly as you do start to get immune to them

      I think it all comes down to the individual on what you want

      I will and have been a test subject for many years trying out new stuff just so I can go to work with out being in pain or waking up smothered in blood ect ect

      I gave it ago hoping it would help me she can always come off them moment she feels they are not for her

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