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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
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Permalink Reply by Dom on
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"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. " Bravo! Your not the first and you won't be the last.
However many, many, many of us have tried this route. The same drugs, combinations and many more. Yet I have not seen any evidence of success, just exemplary fortitude. The problem is no one knows where/why it starts and therefore where/what to negate it.. The suppression of the immune system by various drugs does not cure or treat Alopecia. Stop them and the hair falls out. Stay to long on them and you incur other problems, which means you have to stop them and any hair falls out.
But I do admire you. "Once more into the breach"
Mistakes are the usual bridge between inexperience and wisdom.
Phyllis Theroux
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Permalink Reply by Bald and Fabulous AKA Terri on
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Please let us know how things are working out with the treatments.
I too tired many different forms of treatments for over 10 years, with some successes and some failures. Was it worth it?....YES. If only to help with getting the knowledge of what works and what doesnt. Recently I made the decision to stop all treatments and give my body a rest from all the drugs. Sort of a detoxic.
Still, keep us updated and I congratulate you on your continue search for success.
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Permalink Reply by Connie - Chris' Mom on
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My son has been on 200 mg/day Azathioprine (Imuran) for about 1 1/2 years as treatment for Ulcerative Colitis. He was also AU for about a year. Right at about the 1 year mark (June) he began to grow hair. He now has eyebrows (although a bit thin), some eyelashes, body hair and even splotchy hair on his head. (I'm real happy about the eyebrows and eyelashes but a bald head looked better than what he has now.) I don't know if it's the Azathioprine or not, but he's not receiving any treatment for the Alopecia. I was curious to see if the medication was the cause of the hair growth, but the plan to discontinue the medication was thwarted when he had a major flare-up on the replacement medication. So the Azathioprine will continue at least until next summer and according to the doctor possibly for the next 10-15 years. I don't like the potential side effects, but if in treating the colitis he can get some positive results for the alopecia I'm happy about that.
Connie
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Please read my reply to my post!
Eric
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I doubt your son will be on the same medication for the next 10-15 years. There seems to be wave of medications coming out to treat UC. I was just reading about one companies pipeline for their UC medication, LMW Heparin MMX.
http://www.cosmopharmaceuticals.com/csm/activities/pipeline/heparin/
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do u have anyupdate i am also using imuran as monotherapy to treat this issue am also an AU now
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Permalink Reply by Galena on
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Best wishes to you Eric--I hope you have a favorable result. Everyone must find their own path, so I won't be one to discourage you for seeking chemical treatment. You know the risks and the prognosis. My main concern these days is what medicine does not know about alopecia. Is alopecia the beginning of more auto-immune problems for some of us? Since this condition is non-life threatening, real answers will probably not be forthcoming in the near future. So, I can see your perspective that some of us must be willing to become research subjects if we ever have a chance of finding a temporary or permanent medical solution for our hair loss. I will be interested in your updates.
Take care,
~Galena
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Right on Galena!
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Well all...thanks for the well wishes.
Some things I have researched and asked my Derm....
1. A patient who had Crohn's(that was quiet and inactive) and Alopecia Universalis (over 7 years) was given Azathioprine. He had complete regrowth and then came off of the med. After stopping the med his hair fell out again....only to regrow after starting the Azathioprine again. The patient continued taking small doses of Azathioprine to mantain his hair growth even though his Crohn's was silent and even though he knew of the potential Side Affects.
2. Azathioprine is normally a well tolerated and common immunosuppressant. Of course, it depends on the individual. The good news is that as you take it if you have side affects , they usually go away when you discontinue the use of it. It has been used in conjunction with Humira and there has been some negative affects....such as Acute lymphoid leukemia in a patient with crohn's who was taking both meds; but there are some who have done very well with it. It depends on the individual's body.
3. Methotrexate in combination or without prednisone was shown to have caused cosmetically acceptable hair growth in most cases. Methotrexate and Humira have proven to have very good efficacy with Rheumatoid Arthritis and Crohn's. No tests on Alopecia that he knows of and I couldnt find anything in my research.
4. If your Doctor decides to allow you to take these immunosuppressants, more than likely they will ensure that you get blood tested every week to check your CBCs. Anything abnormal and you are ordered by your Dr. to discontinue use.
5. Alopecia is most often times a sign of a preexisting autoimmune disorder....such as Celiac Disease/Type 1 diabetes, throid issues, etc. Additionally, myself for example, Alopecia was a gateway to other autoimmune diseases. I had Alopecia Universalis but eventually acquired Ulcerative Colitis and my rheumatologist believes me to also have Ankylosing spondylitis.
I hope some of this helps you guys. You really have to be the one who is comfortable with this type of treatment. I am in NO way trying to sway any of you to do what I am doing. I just truly believe that if I want to see positive results I have to try and look at this disease in a light other than acceptance. The only way to know is to be the guinea pig. Why not try anyways since I have UC and joint issues due to inflamation? I will keep you posted on any developments.
God bless all of you out there.
Eric
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I would suggest that before starting Azathioprine you have your doctor order a TPMT Genetics test. A TPMT Genetics is a test will determine the presence of genetic mutations associated with a decreased production of the thiopurine methyltransferase (TPMT) enzyme. This enzyme is responsible for the metabolism of thiopurine drugs. If you are unable to properly metabolize the medication it can lead to acute liver toxicity. My son's doctor also monitors his Thiopurine levels along with the CBC tests to make sure that the levels don't get too high and damage his liver.
My son hasn't experienced any side-effects (unless you consider his growing hair), but gets full blood work-up every 2 months.
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http://www.natural-treatment-for-alopecia.com/2010/09/alopecia-surv...
This is quite an interesting link I found. Although it does not specifically state Hypnotherapy. It does include creative visualisation and relaxation techniques.
Although the respondents are mainly AU people (80%) to AA (20%). Otherway around in "real world". It does highlight many behaviours and conditions of living with Alopecia.
1 - 50% conclude Alopecia is down to stress or circumstances ( fair enough)
2- people have tried the FULL array of treatments on offer by the medical world.
3- Alopecians are very persistent lol
4- 58% say they have had no success and 42% peach fuzz and hair that falls out and of course it worked at the beginning
5-people then try ALTERNATIVE
6- 58% (visualization, meditation, cutting back on stress, Vitamin D) has worked for them and 42% no.
7- 57% are open minded to treatments. 27% as long as no side effects.
This pretty sums up my experience of what i have read.
The most interesting question for me was q2
How long have you had alopecia?
Less than one year 0
1 – 5 years 14%
5 – 10 years 29%
More than 10 years 57%
Although most people interviewed were AU ( the smallest % of Alopecians). Most people had Alopecia for years and years (well AU) Nearly 60% for over 10 years. Im half way there lol. Again from the many years of reading about AU. It stays for years whatever you do!
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I agree that it is a very frustrating disease. I believe though that as long as you allow it to keep beating you your faith in finding something that works goes out the window. Additionally, I am not much of a stats guy. If it says there is a 40% or 30% chance of working I will do it just to proove it wrong!
The acceptance of this disease is a positive thing. But to move on through life not trying to fix it is a sign of losing faith and being defeated. I don't know the word "defeat" or "quit".
Eric; A successful man is one who builds a solid foundation with the bricks that are thrown at him.
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