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Steroids and the long term effects

Posted , 3 users are following.

courtney_71550
courtney_71550

My husband has had WG for over 13 years now and after being on no medication for 10 years he had his first relapse in Sept. 2013. It started with conjunctivitis in one eye, which later lead to nose bleeds, and coughing up blood, which lead us straight to the ER. They had to pump him with steroids and started chemo after a week of being in the hospital. The Dr.'s told us he would need chemo every 6 months for the rest of his life. That being said I wish I had known more about this disease and that there was more information about it on the internet. I want to raise awareness about the long term side effects of steroids because no one ever told us or warned us of the damage it causes. After a year on chemo and steroids my husband noticed pain in his right hip, he thought he pulled a muscle at work, however after a few months it got worse. In Nov of 2014 my husband had a full hip replacement due to A vascular narcosis due to the steroids which stops the blood flow to the bone in the joints. He has it in both hips but the other hip is not fully damaged but it will progress. I know steroids saved his life but I just want to share the information with you that I wish someone would have shard with us. My husband is 30 years old and yes he is not in pain anymore and he is not taking the chemo or steroids to prevent the other hip and joints from erosion. He is being closely monitored by his rheumatologist and other dr.'s because he is back in remission. I hope this helps someone and I wish all you the best!

0 likes, 3 replies

3 Replies

  • shannon86371
    shannon86371 courtney_71550

    Posted

    Hi there, I wanted to send you a message to say that I really feel for you and what you and your husband are going through, WG is a nasty condition, and a bit of an unknown, thanks for taking the time to warn others. My lovely 15 year old daughter has had this illness for a year, we are  learning about it all the time. All the treatments that you mention your husband has been involved in are big things to deal with, hold on tight, here's hoping that you have turned a corner. Fingers crossed for your husband and my daughter and other 'sufferers' that they live their lives with this condition to their full potential x

    • courtney_71550
      courtney_71550 shannon86371

      Posted

      Thank you for the encouragement Shannon, it means a lot! Having support and knowing there is hope helps me get through the rough days. I wish you and your daughter the best!
  • Ann1110
    Ann1110 courtney_71550

    Posted

    Hi, I'm 47 and diagnosed 4-5 years ago. I was advised to have chemo & steroids and refused due to side effect details I read on the web. Consultants got grumpy with me but I dug my heals in.

    Had ENT airways issues which were surgically resolved after airway closed 60% due to inflammation.

    I stayed off meds but it came back, do I agreed to Sirolimus which is way less toxic, but not massively used - can't find anyone on here who has had it, it's a kidney transplant immuno suppressant taken in pills.

    Worked really well & I'm in remission & I've taken myself off the meds - consultants grumpy again!

    I'm constantly pushed to use Ritixumab - but this is still on trial to determine long term effects & I'm not playing guinea pig.

    Not sure how my WG will go in future years but for now I'm happy healthy & drug free.

    Good luck!

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