Alopecia World
www.alopeciaworld.com
Hello my fellow Alopecians! Treatment Options/ Research
Well, I wanted to share some news with you guys and gals. I come on here every so often to check out any new potential research and treatment.
Anyways, I tried Sulfasalazine for about 4 months....not much luck. Some fuzz but nothing else.
Recently, my rheumatologist/ GI specialist/ and Dermatologist believed it would be a good idea to put me on HUMIRA.
Some history- I have had some bad Ulcerative Colitis as well as a lot of joint issues to go along with my Alopecia Universalis.
Since I took my first shot of Humira I have felt a LOT better with my Colitis and my joints aren't as bad but still a little stiff. Nothing to report on the Alopecia, though. HOWEVER....
My Dermatologist wants to give the Humira the opportunity to do some work on me and he wants to see if it helps with the Alopecia. He doesn't think it will assist with the Alopecia, though. Past trials have not been successful with TNF blockers.
When I go back to see him (Dermatologist) in November I will probably be put on either one of the following drugs which could help the Alopecia.
Cyclosporin
Azathioprine
Methotrexate
All have been shown to help with Alopecia in past trials. Since I am healthy as an Ox and my body is a walking body of inflamation, he wants to see if an additional immunosuppressant will work. I already know the risks....I already know the possibility of failure. One thing I need you all to know is that I am accepting these risks. Alopecia and autoimmune diseases are caused by the body attacking itself. The only treatment and or cure in my opinion will come from treating the problem. Until some of us stand up and try we will never know. So I will keep you all updated on my progress.....GOOD AND BAD. Wish me well on this endeavor! Here is a quote for all of you from me. It's from Abraham Lincoln.
Always bear in mind that your own resolution to succeed is more important than any other.
Abraham Lincoln
Eric
Anyways, I tried Sulfasalazine for about 4 months....not much luck. Some fuzz but nothing else.
Recently, my rheumatologist/ GI specialist/ and Dermatologist believed it would be a good idea to put me on HUMIRA.
Some history- I have had some bad Ulcerative Colitis as well as a lot of joint issues to go along with my Alopecia Universalis.
Since I took my first shot of Humira I have felt a LOT better with my Colitis and my joints aren't as bad but still a little stiff. Nothing to report on the Alopecia, though. HOWEVER....
My Dermatologist wants to give the Humira the opportunity to do some work on me and he wants to see if it helps with the Alopecia. He doesn't think it will assist with the Alopecia, though. Past trials have not been successful with TNF blockers.
When I go back to see him (Dermatologist) in November I will probably be put on either one of the following drugs which could help the Alopecia.
Cyclosporin
Azathioprine
Methotrexate
All have been shown to help with Alopecia in past trials. Since I am healthy as an Ox and my body is a walking body of inflamation, he wants to see if an additional immunosuppressant will work. I already know the risks....I already know the possibility of failure. One thing I need you all to know is that I am accepting these risks. Alopecia and autoimmune diseases are caused by the body attacking itself. The only treatment and or cure in my opinion will come from treating the problem. Until some of us stand up and try we will never know. So I will keep you all updated on my progress.....GOOD AND BAD. Wish me well on this endeavor! Here is a quote for all of you from me. It's from Abraham Lincoln.
Always bear in mind that your own resolution to succeed is more important than any other.
Abraham Lincoln
Eric
Replies to This Discussion
-
Permalink Reply by Eric Dane Mattson on
-
Connie,
I know about that test but thanks for throwing out there. They mentioned me getting that test. Please stay in touch with me on here so I can give you my experiences. OH! Also my Derm is going to give me UV treatment along with the immunosuppressants.
Eric
-
Permalink Reply by Connie - Chris' Mom on
-
I will definitely follow your progress.
One thing to consider - it took several months to get my son to a "therapeutic level" of the immunosuppressants and a total of about a year before he had any hair growth.
Also as a note of encouragement, I noticed last night when the light was just right, that there is light colored hair on most of my son's bald spots! I was afraid the splotches of hair was all he was going to get - not anymore - I optimistic he might get back a full head of hair!
Connie
-
-
Great! Does he take any other medications that are Immunosuppressive with the AZA?
Eric
-
-
He did just recently (a month ago) finished 9 weeks of prednisone (starting at 60 mg/day and stepping down) that he had to take because of a major flare-up of his colitis. In the last year and a half he's had 3 rounds of steroids, although this last round was the longest/strongest and the doctor says the last.
Connie
-
-
Connie,
Have you looked at putting him on Biologics? I took Humira and within 3 days I had ZERO side affects or problems with my Colitis.
-
-
The flare up was caused by a switch to Pentasa. We found out that he doesn't tolerate that class of drugs. The doctor is saying if he flares again she wants to try Remicade, which I believe is also a biologic. She would have tried it this time except we waited too long hoping the Pentasa would start working. When she/we were ready to give up, my son was already bleeding and she was afraid to wait the minimum of 3 days it would take to get a TB test and insurance approval. Because of his age she doesn't want to go the steroids route again. The biggest problem is that my son's flares get serious before we realize it because he rarely experiences any pain. I thought that was a good thing, except that we don't realize how serious it is until he's bleeding (and he doesn't always tell me when he's passing blood either).
I glad to hear the Humira is working for you. I'll ask his doctor about it when we go next month. I just read about the long term possible side effects of all these different treatments and it scares me. He's only 15 and I worry what his future will be like. Alopecia is probably the least of my worries, but to him it's the biggest one, and he looks at it as an outward manifestation of the autoimmune problems inside.
-
-
Remicaide is a biologic. Although many people have been treated with it and it is highly effective, a lot of people have allergic reactions to it because it is an artificial antibody developed in mice. I didn't want anything "mouse" inside me! I said, " Nope! Humira!" Anyways, here is a link that gives you a good description of it: http://en.wikipedia.org/wiki/Infliximab
Humira is more expensive and isn't without side effects but it is one of the safer and more widely used biologics. Here is a link: http://en.wikipedia.org/wiki/Adalimumab
I guess it comes down to what your son, you as the parent, and your Doctor want for him.I can honestlyt say to you Connie that the thought ALWAYS crosses my mind that the route I am taking is a dangerous one. I just feel like I owe something to myself and others who have these awful diseases. Who knows...maybe I may be one of the next poor souls to get better from these treatments and help others. That is what I pray for.
As for your son...I would like to pass on to him some of my inner strength. I grew up with UA in high school and AA through elementary and middle school so I know that kids are cruel. Please tell him that I am one of many UA patients that has excelled and remained resilient throughout my life. I have the courage to say that I am a success in the eyes of many. I have served honorably in the military for 14 years and have been a police officer. I guarntee you when I stepped off of that plane coming from Iraq that nobody cared at all that I was bald! I have never allowed my autoimmune issues to be a reason not to be the best at whatever I set my mind to. Please tell him that when people are ignorant, he just needs to look them in the eye and BRUSH THE DIRT OFF OF HIS SHOULDERS! All of us that have these diseases develope thick skin over time and I know it's hard, but he has a lot to offer the world and the good lord has plans for him. One day, there will be a way to beat all of this. Medicine will prevail. It's just a matter of when.
Eric -
- ‹ Previous
- 1
- 2
- Next ›
© 2024 Created by Alopecia World.
Powered by
