On June 17th, I had my most recent appointment with my dermatologist.
I guess I should probably start somewhere else. A few years ago I'd read about a therapy that was just in the beginning stages of testing. Only being done in small case studies, and still there was only one that had been completed at that time. It seemed promising. With most of it's patients reporting 70% improvement at least. The treatment was with Remicade.
Remicade (or Infliximab) is a drug used to treat autoimmune diseases by blocking tumour necrosis factor alpha (TNFα). It prevents TNFα from binding to its receptor in the cell. Remicade is administered by intravenous infusion - usually in 2 hours sessions.
As Remicade is not approved by the FDA for treatment of Hidradenitis Suppurativa, it was denied the first time I asked about it. That's when I went on my latest round with Accutane - which was again unsuccessful. Not surprising really. So I went in this time seeing that there had been more case studies logged, more information on how this was helpful to a lot of patients, and prepared to fight to try this treatment for myself.
I do have to say though that I like my current dermatologist. She's always been very proactive in trying to help me, and always extremely thorough in looking for new possible treatments. I walked in on that Wednesday afternoon, armed with my printouts, and let her do my exam. Let her see that it was just as bad - if not worse - than the last time she'd seen me.
And that's when she said it. The words that made a smile cross my face for the first time when thinking about my disease. She said that there were some new treatments that she thought would be a good idea. That involved either IV infusions, or shots (similar drugs to Remicade like adalimumab (Humira) and Etanercept (Enbrel).) She said that she wanted the head of the department to come in and look at me, and see what his opinion was.
And he agreed. They wanted to treat me with one of these TNFα blockers. I almost cried. I couldn't believe it. Could it really be so easy? The truth is that it hasn't been easy, but it felt like a huge victory for me. And it's not that easy to be honest. There are other obstacles, but they felt like nothing. I had to have a TB test, as well as some other blood work. It has to be pre-approved by my insurance - which I admit is my biggest concern. And there are some side-effect concerns.
My dermatologist did tell me that my insurance would most likely approve the treatment as there have been several case studies on this printed in medical journals and such. So it wasn't a completely off-the-wall treatment that they were suggesting. She also said that if they denied it, that we could contact the drug company themselves - because sometimes if the insurance won't cover it, the drug company will. Then she left the room to get everything set up.
I sat there in a daze. My mind racing over everything, wondering if this could possibly be the answer. I admit doubt started to enter my mind. But I shook it away, and looked at all the promising evidence that this would work. And then I reminded myself that even if it doesn't, my dermatologist is really willing to work for me to finding the best treatment for my HS.
When she came back in and went over all the information on the drug with me, told me the tests I would have to have done, and that I'd need an appointment with Oncology (because the infusion center is part of their domain), I was almost giddy with excitement. Nothing could ruin my day.
I've had the tests. (And bruises from the TB and blood work). I got a call that my Oncology appointment has been scheduled (July 20th). Now I'm just waiting to hear what the insurance company is going to do.
And I hope.
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13 comments:
Hi Angela, glad to have found your blog.
I'm not quite sure if I have HS or not. It's always just been recurring boils, but recently saw two surgeons and I finally asked the second one, is this HS? He said something like that.
Mine is under my breast, and I'm having surgery in a few days. I'm googling a lot. LOL.
I hope this medication works for you!
Sorry to hear about your Hidradenitis Suppurativa.
I too suffer from HS and haven't found anything as yet that give me relief.
There is lots of information and support here: http://www.hs-support.uni.cc/
Hello Angela,
I followed your link from Nalini Singh's blog. Of all the posters, I don't know what made me click on your name, but I'm glad I did. I don't recall my condition ever being called HS but I'm sure that's what it is. I'm in my 50s and have been experiencing the boils since my 20s. The condition runs in my family on my father's side. I have found that Silica, which you get at the health food store will bring one
of the boils to a head overnight. Plus, I take an antibiotic every day.
Good luck with your journey. You are the age of my daughter and she too suffers from it.
Hello! I wanted to check in and see how the treatments are going. I have started my first infusion of Remicade and is very excited and optimistic. this is a horrible disease to have so I'm hopeful. It took me a year to get this approved through the insurance but now that it is, hopefully this will work. Good Luck!
Hi, how did or is treatment going. I can relate , I have HS @ stage 4 and going out of my sanity. I'm waiting for remicade approval. Preying everyday that this med will be the answers to my hevenly prayers.
hopefully remicade will work for all of
us
Hi there,
I only just found you're blog, I understand your battle with HS because I've had to fight with it too. But I have discovered how to help and get rid of mine (almost entirely)
Here's my blog:
http://sanitymiscellaneous.tumblr.com/
I've been drinking all-natural Plexus Slim for weight loss. I have NOT have even one lesion in three months! Find someone who sells it and try it. It has a money-back guarantee even. I just had to share because nothing else has ever worked for me.
I did join so I could get it wholesale but I'm not marketing, just sharing since I finally found something that works!
Kathy
pink2bhealthy@gmail.com
l sell Plexus! I can tell you that it absolutely helps with HS! I've had stage 3 for over 20 years and nothing I've done has helped. After 1 month on Slim, the flare ups are nonexistant! I will also be taking the probio5 and biocleanse soon since candida overgrowth is a problem for those with HS. If you'd like to read about the products or order visit ni1972.myplexusproducts.com
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