Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi all, I've been lurking on this site for a few years. I come here to get info and inspiration I finally decided to actually sign up. I've had HS for at least 5 yrs. problem areas are right groin and arm pits. I came here to ask a few questions:
1. Has anyone tried Plexus? They have many products and it is a MLM group. However, they have a supplement that is supposed to help with gut Heath. I've seen many testimonies of people with autoimmune diseases have great responses. I've placed an order.
2. I just got a called to participate in a study for a new drug designed for HS similar to Humira. I was wondering if anyone has done a clinical trial before and their experience. I know if I get selected and participate I'll need to put plexus on hold.
I really don't like taking drugs but this is a series of injections. There are no known side effects to date on this drug which is is a little unnerving.
Any feed back is greatly appreciated.
1. Has anyone tried Plexus? They have many products and it is a MLM group. However, they have a supplement that is supposed to help with gut Heath. I've seen many testimonies of people with autoimmune diseases have great responses. I've placed an order.
2. I just got a called to participate in a study for a new drug designed for HS similar to Humira. I was wondering if anyone has done a clinical trial before and their experience. I know if I get selected and participate I'll need to put plexus on hold.
I really don't like taking drugs but this is a series of injections. There are no known side effects to date on this drug which is is a little unnerving.
Any feed back is greatly appreciated.
My mother had MS and was taking immunosuppressive medications. She had tried chemotherapy even, to no avail. Eventually, she developed pneumonia (of the terminal type, not infectious type). She was expected to live five years, but passed away only two months following diagnosis at the age of 51. That was in 2008. My siblings and I were very confused - but it was explained to us that the suppression of her immune system caused her quick decline.
I can't say that I refuse to take these type of medications because I am not yet debilitated. However, I will hold out as long as I possibly can without them. Again, this is only my opinion and is based on a pretty traumatic experience. I hope someone else can chime in on a more positive note... I hope those stories exist!
Best of luck to you... sorry to hear you have this horrific disease!
SuzyQ