Hidradenitis Suppurativa Support Group

Good morning,

Just a quick one really.

Since being diagnosed with HS in April and finding the lovely website. I have been taking Accutane, Which is renowned for doing quite a lot of harm to the body.

Dry lips, bleeding nose, fatty deposits in the blood and they are the nice ones.

In the last two weeks I've noticed that my flare ups are becoming more and more frequent, especially with my main "Mr.Lumpy" I started up again on the 17/05/2012 (We do backwards dates to you Americans over here in England) and by the 23/05/2012 I was coming back down which was great!

To being perfectly level (or as close as by Friday evening (25th)

Unfortunately as of Saturday Afternoon (26th) Mr.Lumpy started again, Rapidly. Full size (golf ball sized roughly) by the evening and very uncomfortable.

I'm not sure if it's the heat that has suddenly started up as we are drawing closer to summer or if it is the Accutane. In my head I think it is the Accutane causing most of the flare up as I have developed quite a few tricks now for cooling the lump thanks to CanFizzle on the HS forum.

I will keep you posted and let you know the outcome but I may be scheduling a doctors appointment soon and let them know I'm coming off this drug! I will stay the Accutane guinea pig for as long as possible though just so you guys and girls out there know if it right for you

But bear in mind I've got my health to think about and the mood changes/swing associated with Accutane just might not be worth it

Thanks for Reading - Cal

Supposed to be a diary entry hahah oh dear

Cal, I hope you have browsed the search box for discussions on accutane and HS. Also, the Mayo Clinic has a good section on it's uses and dangers.

I am of the opinion that no one with HS should take it for HS. If you are taking it for acne,then I don't know. I do know it can have severe side effects and those can leave permanent damage. Plus, almost to a one, those who took it for HS said it made it much worse after a time. You couldn't pay me enough to take it for any reason. But that's just me.

I so enjoy your posts Cal.. You are a kick! Plus, I just love your phrasing.

hugs from across the pond, Karen

Was it the Accutane "Guinea pig" part that made you chuckle?

I don't have acne this time so Accutane is solely for getting rid of the HS but as far as I'm concerned Accutane is not worth it I'm just staying permanently swelled now which Is ridiculous in my eyes and I'm calling the doctors tonight for an appointment. I shall say "NO!" Firmly (but politely) to the use of more Accutane.

I hope you're well today Karen

P.s "hugs from across the pond" nice sign off I like it!

Cal

Actually it was the "...and they are the nice ones." that made me chuckle. That was after your description of the harmful effects accutane had on you.

Yes Cal- I agree about "politely" saying NO to Accutane. I was just as curious & hopeful of the benefits, until I was advised by Karen personally and started doing research of my own. I figured out that the negative aspects were not worth the risks of any positive that the medicine could "possibly" do for my HS.

::hugs:: to you & I hope that your horrible side effect go away quickly aftr you stiop taking Accutane. Also, tell Mr. Bumpy to leave you at peace for a few days! <3 Candace

I know that post about Mr. Bumpy was meant for your diary, Cal.

Sorry, I had to laugh, cause it is just so darn funny!!! But hey, I think everyone has been warned that there is no modesty here. How could we ever talk about HS at all and be modest! <3

Plus, it's no worse than someone naming their 'bumpies' Abbott, Costello, Dean and Jerry.

Post edited by: oregonnative, at: 05/31/2012 09:32 AM

Post edited by: oregonnative, at: 05/31/2012 09:32 AM

I love the idea of naming our aliens! I am not certain what to name right now, I am fighting one on specific on the right side groin & it keeps coming & going... being a sneaky little demon! hehe

ahahaha!! I have one like that too Candace. I call it Dobby. I know, he's not really a demon or evil,just a house elf, but he sure was a big pain in the .......(fill in the blank) in Harry Potter! LOL

Ha Karen! Kinda reminds me of the "Elf on the Shelf" Christmas story of hiding a tiny stuffed elf for your children to locate each morning. Luckily- this elf does not move around much, but does like to hide & reappear by his own choice! We are so silly! <3 Candace