Exploring our options with HS
Hello all! First, I'm wishing everyone the best possible day. I know we sometimes have good days or even a part of the day that's good and I want us to see more of those! I decided to write a little bit since I went to the dermatologist yesterday and was referred to a new specialist. I've been down this road before but this will be someone new to me and sounds like they have more experience and done more research than the last specialist I had seen over 7 years ago.
I've had a total of 10 surgeries for my HS since I was diagnosed at the age of 16 almost my 17th birthday. I have enjoyed a remission on occasions and didn't even know how I got there honestly. I'm on a biologic now and it's not the first time I've been on one but it's only doing so much for me. I currently take Cosentyx for both my HS and AS (ankylosing spondylitis).
This is the fifth biologic I've been on since 2012. I don't want to have more surgeries as I was telling my dermatologist yesterday. She says she certainly understands and doesn't see where I can't explore some other options with the HS specialist at a local research hospital she's referring me to. I'm 48 now and a breast cancer survivor living with two other autoimmune conditions.
I'm so tired of invasive therapies and after my double mastectomy and chemo, I remembered thinking I better not need another surgery anytime soon. So I'm not keen on going under the knife for the HS which is now been plaguing my genital region and buttocks. The inflammation responds very well to steroids, usually prednisone specifically. I take doxycycline and like I mentioned, I'm on a biologic but there are times as of recent that I can't get out of a flare.
If they taper me off of steroids, within a couple of months I'm just going from flare to flare. Even my dermatologist said, I'm not sure what's happening with you right now! Is it the premenopausal changes in your life, stress, body changes after cancer? We really don't know. I appreciate her honesty and not pretending to know everything but I can't stand how much it's disrupting my quality of life and mental health again.
So I want to explore options maybe even clinical trials. I know one thing, I had never imagined I would still be dealing with this at this age. I knew there was no cure but I had imagined I would have infrequent flare-ups and not these monstrous ones that have been popping up lately. I can't give up on exploring because this is affecting my social life, family life, Mental Health and everything!
I did speak with my dermatologist, and just today mentioned to my rheumatologist as well, about how HS is impacting so many aspects and ares of my life. I let them know I have to fight my depression even harder although I already take an antidepressant and I already go to therapy, I let them know plans that get canceled, times I have to stay in bed or rest on the couch, how we rescheduled family travel plans on more than one occasion, and it's interfered with volunteer opportunities I had been enjoying at my son's University library... By the way, I've never seen the article that you shared the link to. Thank you!
oh good for you! It sounds like you're already doing such a great job of being proactive in taking care of yourself. (Both physically and mentally!) Having to deal with depression on top of a chronic illness sounds incredibly challenging, and it's so great that you're talking openly with your rheumatologist about how HS has been impacting so many areas of your life. That being said, I am sorry to hear that it has been such a struggle. It is so frustrating when chronic condition interferes with things you enjoy like family travel and volunteer opportunities that you enjoy!
I came across this poem/article that one of our advocates wrote about "You are Not Alone" that I also wanted to share with you, https://hsdisease.com/living/strong-beautiful. It doesn't give much for advice but I really thought it was a beautiful sentiment to share with others going through the challenges and frustrations of HS.
Sending you more gentle hugs! -- Warmly, Christine (Team Member)
Hello
, it's good to hear from you again. Thanks for giving us an update about how things have been and what you've been doing to explore options for HS treatment. I really do hope that this specialist provides more helpful information and options others than surgery. It certainly is understandable, especially given all the surgeries and health conditions you've been through, that you'd rather avoid further surgeries at this point.
HS really can be so tricky to manage and challenging to deal with. I'm sorry to hear that the steroids help temporarily, but then you're back to flaring. I agree that it's refreshing to have a doctor be honest, and admit when they just don't know, but what a challenging place to be in. It's great that she's referred you to a specialist, though and I really am crossing my fingers this helps you get on a path to some relief. HS really can be so disruptive, and you deserve to be feeling better both physically and emotionally!
I hope some of our community members with similar experiences can chime in and share with you. I know you're not alone in thinking you wouldn't still be dealing with HS to the degree that you are after these years. Were you able to speak with your dermatologist about how HS is impacting so many aspects and ares of your life? I can't remember if I've already shared this article with you, but I'm linking it here (just in case). https://hsdisease.com/self-esteem It's about the emotional impact HS can have and how it can impact mental health.
Please know that our community is here for you and crossing our fingers that you finally get some relief! Don't hesitate to reach out anytime. Sending you gentle hugs. -- Warmly, Christine (Team Member)
