Now I Know Im Not Alone

I have been suffering with HS since I was 21yrs.old.mostly in my groin area,breast and buttocks.Many surgeries and really painful flare ups.At 43 I thought I was over it since I was in menopause,and I knew that somehow it was related to my cycle.Then I was diagnose with RA,had to star a medication called methotraxate,it slows down the RA progress but your immune system is open to many infections.Lucky me HS started all over again,this also make me depress since there is many times I cant wear clothing,sit or walk.Is also embarassing to tell or explain to others my illness.I feel like this is never going to let me be totally happy.I just changed medication for the RA to Enbrel(injections once a wk) now I have HS all the time.Spoke to my dermatologist and he said that the new med.had a study that is suppose to help HS,not for me,it makes it worse I know how my body functions and to many yrs of pain that's debilitating.
bimabe bimabe
46-50, F
2 Responses Sep 12, 2012

Thanks for your comments,I'm so afraid,Im already taking Enbrel for the RA and this does give me a lot of flare ups.My Dermatologist had mention ones of those med helping the RA.I spoke to my RA Dr. And she said she knew nothing about that ,so I did my own research and found some people saying the Enbrel help and some others mentioned Humira the differerence between the three I mention is the frequency of the shots I opted to just go with Enbrel because is weekly if I took one of the other ones they will stay in my system longer and I would be out of luck with the flare ups lasting longer..It's been so long living like this I tried not to experiment with new stuff.Thanks for the advise.....

I was just reading where Abbott is running a clinical study using a RA medication to see if it helps HS. Maybe you could look into the open study and with any luck maybe get 2 good results in one.. I forget the name of the drug (not humira or enbril) recall begins with an A.. search open study for hidradenitis suppurativa by Abbott labs. and hopefully it will pop up...
Some places say is hormone related.. other's say is now not.. seems the more I look for answers the more different places say different things.. I am sorry you are getting more flare ups... again..maybe you can get into the study or a clinical trial since you will need RA meds.
Yes.. trying to explain to people why you cannot come out cause you cannot even wear clothes etc. is rough.. my close friends know from years of this if I say I have a cysts flare up what it entails... other's not close to me I just make other illnesses to explain (work etc.) I have had the flu more than any other human alive! ha ha! Good Luck!!!!! HUGS, JayEllen