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,...
I been suffering from HS on both of my armpit for bout 3yrs now and it has been a difficult and painful journey. I have taken numerous antibiotics and just recently accutane which didn't work for me. I just started the Remicade infusion about a week ago, so far I see some improvement but my derm said I won't see a big difference right away so I don't wanna get my hopes up, I just pray to God this new medication helps me with this painful, embarrasing and life changing condition.
With the remicade infusion I have to take it every eight weeks and it last almost three hours, so I take my phone, mp3 and a blanket cuz I have to sit or lay there for those hours.
I will keep on praying for everyone that is going thru this ugly ordeal, God knows I had my share of tears bcuz I have fealt defeated physically and mentally. I will keep you guys posted on the remicade infusion.
With the remicade infusion I have to take it every eight weeks and it last almost three hours, so I take my phone, mp3 and a blanket cuz I have to sit or lay there for those hours.
I will keep on praying for everyone that is going thru this ugly ordeal, God knows I had my share of tears bcuz I have fealt defeated physically and mentally. I will keep you guys posted on the remicade infusion.
I feel you. I am at work and can barely walk because of a new flare up. Can't catch a break lol.
The infusions are ok, there administered thru an IV, which means they always have to get a good vein.lol. But before I start the remicade they also give me benadryl for pain. The infusions are almost 3hrs long, that's a long time so the benadryl comes handy cuz I fall asleep like a baby.lol. I just pray to God I may have found my cure :-)
I'm not great with needles but if Remicade is a solution, I will just have to suck it up and take a nap :) Again, please update this post over time as it is likely I will be trying this method!! I hope you found your cure too!!!
I've had an open hole for about 5 months. Because of the area (groin) it just won't heal. It starts to close and rubbing opens it back up. I am finally moving forward with excision (cut out) and getting a biopsy while I am at it. I am getting a second opinion with a general surgeon and scheduling the procedure for January because of insurance. I tried to avoid it for as long as possible, but have no other option.
To answer your question, it is really only time that helps. If it is a difficult area, it just takes that much longer.
I did had open wounds and after awhile on this medication, the wounds got smaller and closed...the drainage really slowed down to the point where I don't have to use gauze anymore.
I am so happy to hear that your doing better and I completely understand that feeling.lol. I also felt so much better, with more mobility and somewhat pain free. My derm increased my infusions from 8 to 6 weeks, I am seeing a difference but I really feel having the infusions more often I can be healed faster.
Did you have a difficult time getting approve for disability? Cause it sucks working with this terrible condition.
Hey, how are you doing? Anything new with your medications and treatment.
I am on remicade since may 2012 and it changed my life. I was very depressed and suicidal because of this disease. I could hardly walk and i was on oxycontin for the severe pain. Since then i got my IV every six weeks and the pain and drainage went down after 6 months i was painfree. Last year i got 4 operations to remove the tunneling and scartissue. They cut it out wide and leave the wound open to heal it from the inside out. My last operation was 4 weeks ago. I had fistulas perianal and they closed a hole in my colon which was connected with the fistulas. So far everything looks good . I still have 1 operation to go but they will pull it over the summertime and do it next november until then i stay on the remicade. I am now a completely different person. I have so much lust for life and positivity. I am on a spiritual journey.
I was so afraid of the operations but they are nothing compared to stage 3 hidradenitis.
TrishaHerron I hope that the remicade will help you as it helped me and for everone who is reading this forum too.
greetings
Spaceteddy
Im so happy that your doing much better and that remicade help you with this horrible disease. I been on remicade since October of 2014 and so far the drainage has slow down and it doesnt hurt as much as before. I pray for the day where im totally free from this, where i can stop putting on gauze or being cautious of people around me, in my opinion this condition can make a person anti social.. i had my bad days at work! My derm change my infusions from 8 to 6 weeks, im really anxious to be as happy as you because i also was suicidal and ask Why Me. I also have tunneling on one of my armpits and they are painful!! Im so glad Im on the right path with this medication since it has made you feel better.