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People who have refused treatment
I was diagnosed, with Alopecia Areata, a couple of weeks ago. I saw a dermatologist who prescribed steroid cream, followed by injections if necessary. I then saw my primary physician who recommended the same course of action. I, however, don't want treatment. I can't quite explain why, but it doesn't feel like the right decision.
My primary has Alopecia patients who experience regrowth from treatment and who get steroid injections for each new/reoccurring bald spot. I don't feel that reoccurring steroid use, that doesn't treat the cause, is something I want to participate in. I normally don't go against my physician's opinion, but it feel like I'm being pressed into treatment.
I hope that some of you may have refused treatment. If so, I would appreciate you sharing your decision and experience with me.
Replies to This Discussion
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Permalink Reply by Katie goodie on
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I was diagnosed last year and got prescribed steroid cream, which just made my affected scalp area look and feel terrible. I made the decision to have steroid injections as my alopecia areata was getting bigger so I thought why not? I got injections in the bigger patch yes a little bit painful but nothing extreme. I had one patch about the size of a fifty cent piece and another developing underneath, I was not prepared for it to get worse. After my first injections I had regrowth after about 3 weeks ( in the bigger patch), 6 weeks later I went back and got a second round only in the smaller patch which not long after started to regrow. I have not had any treatment since December last year and I have kept the regrowth and have not had any others appear. It really comes down to personal opinion are you prepared for it to get worse? Do you want to try to speed up regrowth? In my case I couldn't bare the thought of losing my hair so I did everything possible to stop it. It depends on the individuals reaction to treatment. They are only injecting small amounts (about 1ml) into the area between the layers of skin.
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Permalink Reply by bree on
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hi-I have alopecia for more then 15 years-im 28 turing 29.u knw-I was on steroid creams and injections,nothing helped-Imade peace with having half a head of hair,if u accept it regrowth will take place on its own-I believe that there is worse cases then losing hair-and plus,u have the authority to heal urself ,,,,,,put ur hand on ur head and pray for urself-YOUR FAITH WILL HEAL YOU.......#*BREE
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The decision is yours and only yours. Do what you feel comfortable doing. I had a couple of injections that did nothing. The dermatologist ended up wanting me to take immune suppressant drugs. I said no thank you and have not been back since.
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Permalink Reply by Francie on
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I had topical injections for a pretty consistent time like 4 years and I regret it.. My skin thinned all over my body ( i started getting stretch marks after gaining only 12 lbs!) , my eyes started to dry out, I had to do eyedrops all the time, had eye pain. I also looked somewhat bloated. My drs won't admit that it was from the steroids but I know it was! I feel like they don't give a crap about anyone! I haven't done the shots in a year and I feel better now, no more skin problems, eye problems , people tell me I look better/healthier now.
I've learned a lot of drs are fast to doll out medication and a lot of the side effects I have are really upsetting. I feel guilty for letting this happen to my body.
I'm working on more natural approaches in the last few months to lower inflammation and deal with stress. With acupuncture, exercise and now the low allergy diet hopefully to get to the source and not "band aid" over the disease.
Even if that doesn't improve my hair, my over all health and well being is better so it's worth it.
Like I said I regret putting any of those drugs in my body. my alopecia doesn't cause illness I just can't justify using these drugs for a temporary fix that was harming my body.
Hope this helps! x
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Permalink Reply by Mike on
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Hi LC.
I discovered I had AA back in November of 2007. My doctor gave me some sort of steroid cream to rub in to the patches, but I never used it. I had looked up other peoples experiences at the time and came to the conclusion right or wrong that the treatments didn't seem to do anything permanent. I decided to accept what I had and let it run its course; What ever way it went. I lost all of my hair from my neck up except for a few finger nail size places. I even had bald patches on my arms and legs. After getting my head sun burnt accidentally, I noticed some regrowth on my head. This again fell out, followed by a long period of hair regrowing, while new bald patches kept turning up in the regrowth. It took about 3 or 4 years, but it did regrow without treatment.
I hope this is helpful, and I wish you well with your Alopecia journey, whatever decisions you make.
Mike
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Permalink Reply by LC on
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Thanks for sharing your experience, Mike. It's comforting to know that other people decided against treatment.
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Permalink Reply by Cassandra on
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Hi.. I've got alopecia on and of for 15YEARS I tried all the Dr's options and some trial meds none seemed to work last year my alopecia came back and this time I lost all hair... I refused all the Dr's recommendations as at the end of the day it's my life... but recently I have started growing hair again given it's patchy and look horrible but I did it on my own so showed me if it's ment to grow it will....do what you you want...if your not comfortable with the options the Dr gives you don't do it... you need to do what's right for you... at the end it's your body.....
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Permalink Reply by Xander Ako on
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I feel, as someone else mentioned, its up to you and how you feel about your alopecia. I tried both, the cream was not good with the irritations and I didn't use it long enough for regrowth, I felt I was replacing one problem with another. I did the injections for a few years with success, in the end, its just a huge game of whack a mole. You get regrowth in one spot, and suddenly a new one turns up and you start all over. Its been a few years now since I was last treated, spots still come, spots still go, hats are cheaper and less painful :) I don't know why you would feel pressured to get these treatments by your doctors, I never felt pressured once, I'm pretty sure none of my doctors could care less if I got the treatments or not. I think collectively there is enough of us here to say the injections work as a treatment for most of us, but can not prevent future spots.
One thing you said stands out to me " I don't feel that reoccurring steroid use, that doesn't treat the cause, is something I want to participate in"
We don't know the cause, and we only have treatments for the symptom. We all have different theory's to the cause, hereditary, diet, stress, season changes, etc. There isn't one certain thing we can all pin point as a treatable cause. So again, the choice is yours and yours alone if you want treatments or if you can live with your alopecia :) For me personally, I choose to just live with mine.
Good luck to you.
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Permalink Reply by fijifrangipani on
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I take my hat off to you for making a sensible decision. I was 16 when I went down that track, and being a teenager would do anything to get my hair back. I didnt realise like you do it only treats the symptoms. Now I would never make the same decision, I no longer look for cures, I would strongly advise anyone not to touch steroids (they do have a time and a place, dont get me wrong) for alopecia. I have progessed from AA to AU and dont wear a wig or do anything about it these days. Most people know me as I am now and I love my life!!! I think you are making well informed decisions, believe in yourself.
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Thank you. It's hard to say no to treatment, when I am so desperate to keep my hair. I think it will be easier to accept whatever this disease brings me, rather than try to battle with it. People who accept and embrace their outcome, like you, are the ones who inspire me.
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Thank you LC.. I appreciate what you have to say. I have a long story on my page as well as photos, which also show my daughter who then lost her hair. She has other issues, and hair loss was the last thing to worry about with her so she received no treatment for alopecia. She now is a 16 year old with the most beautiful thick hair. I understand the desperation to keep your hair which is why we try everything without thinking it through. I did a lot of natural stuff, vitamins, diet, elimination diets, and that doesnt worry me as I know it has health benefits regardless of whether it helps with the hair. If you cant see my photos on my page,a nd please do feel free to check them out, then add me if you like.. Keep up the good work. I believe one day they may find the answer to this, but until they do, we just have to make the best of what we have.
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Permalink Reply by RJ Martinez on
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IM 44 years old and i had all that done when i was like 10 years old and i still have no SIGN of hair. OHH the days when I used to shave the PATCHES... YOUR DOING good! stick to your GROUND....feel free to email me D4GG312@gmail.com
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