At what point did you decide to stop treatment for alopecia areata?

When my hair first started falling out I had no clue what was going on, it all happened so fast (hair one month, bald the next) that when I started going to a dermatologist I started doing everything she told me. After speaking to a specialist and personal research I decided that there truly is no point in putting my body through all those drugs. What I had learned is that if your body is going to correct itself it will do that regardless of what treatment method you choose. The fact is that there is no cure and if there was really a treatment that worked for this then there would not be women on this website who have had it there entire lives! My hair did begin to grow back when I was on monthly high doses of prednisone however it fell out just as fast as I stopped. I still can't kick the idea that maybe there's something else wrong with me that can be corrected and let me have my hair back. I know I can't be the only one, I'm still new at this, I'd like to hear about when you decided "it is what it is" and "whatever is going to happen is going to happen".

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Permalink Reply by KFlame on February 14, 2015 at 9:16am
I've had alopecia since very young. I remember my mum covering my patches with verious creams. This helped to control it for the most part. But as I got older and I lost all my hair I went to a hospital and she mainly told me there is no cure. You could try the injections but for the volume of hair loss this will be a painful and possibly pointless thing. I agreed so didn't bother trying any treatment.
I did see another hospital a few years later who tried all sorts of tests on me. They all came back negative. I thought to myself one day after the blood lady physically cut me that I was not even going to bother going back for any more tests.
I've not bothered with hospital for nearly 6 years now...
Permalink Reply by Crazy Horse on February 14, 2015 at 9:17am

I got Alopecia Universalis at 8 years old [4th grade]. I tried everything! Expensive Specialists in New York City. Several Dermatologists. Radiation, cortizone shots & creams, etc. My hair grew back -- then eventually fell out again, over and over and over. My hair fell out completely in 6th grade, then 10th grade. I just gave up trying. There was no cure. So I said to myself live with this until there is a cure. I am well into my 50's now -- and I'm still waiting for that cure! Show me the cure to put hair back on my head! I pray to God it will be in my lifetime.

Permalink Reply by LouiseMadeline on February 14, 2015 at 9:52am
Hi Jessica:
My story is very similar to yours. I never heard of alopecia, until I turned 50 when my hair suddenly and unexpectedly starting falling out. Within two weeks I went from a full head of hair, to being completely bald. Two months after this, I lost all of my body hair. I went to the best dermatologist in NYC and did every treatment available. I did this for about 6 months, but to no avail. I am now in my 4th year of Alopecia Universalis and my hair has begin to grow back. From all I've read, I know my chances of keeping my hair is slim.
In all honesty, I am at peace with this disease. I have found a wonderful wig stylist and cosmetologist, who tattooed my eyebrows and eyeliner, here on Long Island, and I have my confidence back. When I choose to share my alopecia story with strangers, they are always shocked because they say my hair looks so natural.
This disease is an awful one and my journey has not been easy, but I am grateful that I am now in a "good place" emotionally. I hope you are too!
Permalink Reply by Dominique Cleopatra on February 15, 2015 at 11:57pm
Hi, I live on LI and wear a bonded-on hair system. Could you give me the name of your wig stylist? Does he/she do hair-bonding or just wig-cutting and styling? Thanks!
Permalink Reply by dcwalsh on February 14, 2015 at 9:53am
I finally stopped treatments about 15 months ago. They were not working for me. While getting treatments I ended up losing all hair (not due to treatments just during). I would grow patches then lose them. I had complete hairloss.

I haven't posted this before because I don't know if this is what works but after stopping treatment I tried the whole 30 food plan based on a book it starts with food.

Exactly 8 weeks after finishing eating that way for 30 days I had huge regrowrh. I tried it again 8 months later and I got regrowrh in the few remaining patchy areas including eyebrows!! I do not know for sure that this worked or if it's my body's cycle. I'm trying again right now (since I just started losing some again!). If it works again a third time that means to me that food could be affecting my condition. I'm hoping!!

Good luck,
Deirdre
Permalink Reply by Lori Black on February 14, 2015 at 11:20am

I agree with the other posters in that time and acceptance will be your indicators for discontinued treatments.  I was AA at 12yrs and am now 42 been AU for 15yrs.  As a teen this whole idea was very difficult to take!! I was subjected to every ointment, liquid rub, and steroid pill in play at that time (mid to late 1980's).  The ointments were the "irritate the follicle" for regrowth kind, messy and made me feel perpetually sunburned, prednisone taken 4 times a day for a few years (7am, 2pm, 7pm, 2am) made for sleepless nights for me and my Mom plus the added bebfit of weight gain!! lol).  Scalp injections grew patches but fell back out. Menoxidil was liquid rub used to help control blood pressure found to have hair growth qualities, only raised my blood pressure and gave me headaches (who has high BP at 14yrs old??!!!) At one point I was sleeping in a shower cap or wrapping my head in saran wrap to create heat and moisture to open follicles!!! Needless to say from 12yrs to 16yrs all of that with the weekly derm visits and I had had enough, I was going bald no matter what they did (lost eyelashes and eyebrows at 15) regrowth occurred for about a 2yrs (with bald patches but coverable, Praise the Lord for RAVE hairspray) but was just temporary and all went again.  I decided I WAS DONE!!! Started smoking and drinking and using drugs at 18 (bad decision) but continued this until age 27 had complete regrowth for 9yrs!!! Quit everything, got married and pregnant with first child, gave birth and 6 months after delivery went totally bald again!!! Discovered the drugs, etc. were my immune suppression = hair regrowth.  Baby takes half of immune system hormones shift and it all goes again!! Went to derm when baby was 6 months and found that they would start immune suppression as soon as I was no longer breastfeeding.  Late husband was organ transplant recipient taking immune suppression so I saw first had what that did to a person (he lived 8 1/2yrs and died anyway).  So never have even considered the derm or treatments again.  I have been a long time (30yrs) learning with GOd's help and supportive friends and family to accept myself as I am and be thankful that I am healthy albeit hairless.  IT IS WHAT IT IS but IT IS NOT WHO I AM!!!

Permalink Reply by Mark S. Hansen on February 14, 2015 at 1:02pm

Hi. My name is Mark Hansen and I live on the east side of Milwaukee. I am going to be 59 on Feb 18th and I have had Alopecia Universalis, no body hair anywhere for over 47 yrs. My hair started to fall out in the 4th grade and by the 7th grade it was falling out in large patches. My parents bought me my first wig when I was 15 and I hid under one until I was 48 before I finally took it off for ever. The bottom line is that there IS no curse or Perm treatment for alopecia. I have known this for decades. The only predictable thing about it is its complete unpredictability. Mark Hansen.   

Permalink Reply by Mark S. Hansen on February 14, 2015 at 1:17pm

One other thing: I also have hypothyroidism, which I did not discover after having a blood test at a doctors office in 1991 when I was 35. My mom had it and she didn't find out she had it until she was in her 50's. There are many symptoms of hypothyroidism, one being thinning hair or hair loss. But Hypothyroidism and Alopecia are two different conditions. My hair loss comes from my Alopecia not my thyroidism because I have been taking medication for hypothyroidism for 25 years and my hair has never come back. I have said this so many times, that I feel there are more pep, possibly mill's in the US alone, who have hypo or hyper thyroidism and don't know it, than have it, know it, and take something for it. If it were up to me doctors would suggest it for every physical examination/blood test. Google all the symptoms and you will see just what I mean. But yes I have read about pep getting cortisone and other injections in their scalp, ointments, etc. etc. But as far as I am concerned if you have it you have it and that's all there is to it. I think one of the biggest problems with this cond though is not just the hair loss but the ignorance, stares, misunderstanding, etc I havwe to say there is little chance of a cure for either.  Mark in MIlw.    

Permalink Reply by Deidre on February 14, 2015 at 2:09pm
My thoughts were basically in line with yours. After reading as much info as I could, I made the decision to stop treatment after two rounds of scalp injections. Because of my age when I was diagnosed and the stressful events in my life which surrounded the onset of my hair falling out, it made sense, in my situation, that I needed to take better care of myself to give my body the best chance of correcting itself. For me, it worked. I ate better, tried my best to not let my hair (or lack of hair) dominate my thoughts, and most importantly, learned to deal with stress better than I had been. None of those things were easy because I was changing life-long habits. Maybe my body had simply corrected the cycle on its own, or changing my life was my magic solution. I'm not positive. But my hair grew back and in 7 years, I've only had the occasional heavy shedding (Which still worries me when it happens) but subsides after about two weeks or so. Each individual's situation seems to be unique, but this is what made sense and worked for me. I may not have been as fortunate had my onset been earlier in life, but treating your mind and body with special care and keeping as positive of an outlook as possible is the best basic medicine for anyone regardless of age, personal situations, or decisions to seek additional medical treatments.
Permalink Reply by Dom on February 14, 2015 at 2:52pm

Bravo for you Jessica.....

Here are my thoughts....

http://www.alopeciaworld.com/profiles/blogs/the-hard-treatment

Permalink Reply by Dorothy on February 14, 2015 at 2:55pm

It is what it is about sums it up.  I will tell you that with every hair I lost I gained weight.  When I lived in Holland I had a Dutch doctor who put me on high doses of thyroid med, I lost a significant amount of weight and had regrowth, and became pregnant all in less than 3 months.  Which I had not been able to get pregnant since my alopecia started.(15 years)  All my health problems I have always thought were from the same thing, hormonal/thyroid related.   The Dutch doctor agreed the American doctors do not, when we returned to USA I have not been able to get an American doctor to repeat the dose of thyroid meds the Dutch doctor gave me, hence no hair, not able to lose weight and went on birth control to be able to get preg with our last child.  

To answer the question, I went from doctor to doctor to get answers to what was wrong in the beginning (1973) tried prednisone, to no avail and tried injections by a derm, that was the end of experimentation until 15 yrs later and we were living in Holland and I went to the Dutch doctor, my only regret is I did not go to him sooner.  I would say in the first 5 years if a doctor would have suggested a treatment that sounded like it might work, I would have been willing to try it, but understand this, first they never told me what was wrong with me, I was not getting any answers as to what my disease was called, much less if there was a cure.  I only found out what it was called when I started working where I had access to the information and found out what it was called myself and asked a doctor I took meeting minutes for in a hospital setting if I had found the correct diagnosis for the name of the disease that I have after I explained it all to him.  This was over 20 year after the onset of AU, he informed me I had made the correct diagnosis.

I am not saying ALL with AU is due to the same cause, I just know my AU reacted with regrowth with high doses of thyroid meds and due to that, I suspect thryroid hormones are at the base cause of my problems, but getting the doctors to agree, not so easy.  If they can not run a test to back up giving a med, they will not.  

Permalink Reply by Dorothy on February 14, 2015 at 2:56pm

It is what it is about sums it up.  I will tell you that with every hair I lost I gained weight.  When I lived in Holland I had a Dutch doctor who put me on high doses of thyroid med, I lost a significant amount of weight and had regrowth, and became pregnant all in less than 3 months.  Which I had not been able to get pregnant since my alopecia started.(15 years)  All my health problems I have always thought were from the same thing, hormonal/thyroid related.   The Dutch doctor agreed the American doctors do not, when we returned to USA I have not been able to get an American doctor to repeat the dose of thyroid meds the Dutch doctor gave me, hence no hair, not able to lose weight and went on birth control to be able to get preg with our last child.  

To answer the question, I went from doctor to doctor to get answers to what was wrong in the beginning (1973) tried prednisone, to no avail and tried injections by a derm, that was the end of experimentation until 15 yrs later and we were living in Holland and I went to the Dutch doctor, my only regret is I did not go to him sooner.  I would say in the first 5 years if a doctor would have suggested a treatment that sounded like it might work, I would have been willing to try it, but understand this, first they never told me what was wrong with me, I was not getting any answers as to what my disease was called, much less if there was a cure.  I only found out what it was called when I started working where I had access to the information and found out what it was called myself and asked a doctor I took meeting minutes for in a hospital setting if I had found the correct diagnosis for the name of the disease that I have after I explained it all to him.  This was over 20 year after the onset of AU, he informed me I had made the correct diagnosis.

I am not saying ALL with AU is due to the same cause, I just know my AU reacted with regrowth with high doses of thyroid meds and due to that, I suspect thryroid hormones are at the base cause of my problems, but getting the doctors to agree, not so easy.  If they can not run a test to back up giving a med, they will not.  

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