Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Lori on
-
No problem LC.
With all the treatments and such for Alopecia, none of us get a 100% guarantee. What works wonders on some may do nothing for others. I went through injections only to be given a false sense of hope and then told I could try again later but there would be no guarantee.
Go informed before you make a decision. Get all the pros and cons of steroid treatment and then make your choice. But DO NOT allow Alopecia to control your life and define who you are!
Take Care Luv!
-
Permalink Reply by Sharon on
-
Hi LC When our daughter was first diagnosed with AA we went to a specialist and used steroid creams, they were horrible! The poor little thing her head got so sore and it was really unpleasant. In the end she decided to stop using as we felt that at the end of the day (and it is each individuals choice) that the creams weren't actually treating the cause of the alopecia, that the hair may grow back but it would inevitably fall out somewhere else. At the end of the day alopecia has a mind of it's own and Nicole was happy to just go with it naturally. We have focussed more on diet and keeping her healthy and finding ways to help her better cope with whatever her alopecia was doing at any one time.
I would say you know what is best for you and to follow your gut instincts. Good luck with your choices:)
Regards Sharon
-
-
Gee justincase I wasn't aware I spoke for the everyone who lives with alopecia. I'm glad treatment worked you. I was speaking from personal experience; which was the question at hand. My dermatologist told me point blank if I went through another round of injections there was NO guarantee that it would work and it may very well grow back and fall out again.
Let's just leave this discussion at to each his own.
-
Permalink Reply by justincase1004 on
-
What are you talking about? I was replying to the OP, not you. There is a process that those with AA go through. The creams, injections, and other options.
One thing that I noticed when getting injections was that if I got my own spots injected early, they had a tendency to not spread. My AA went spots and then tried to spread throughout.
I know when someone's hair falls out it sucks. There was a point where I was just like "eh, I give up." I think people should find a good derm and exhaust all options before refusing treatment. The strange thing was that when I finally decided I do not care if my hair ever grows back, all of it grew back? Weird.
-
-
Please except my apology Justin.
Being bald did suck at the beginning. For a man, even though the transition probably isn't any easier, society is accepting of a bald man. Try being a bald woman. In a society where women are bombarded by unrealistic images of the so called standard of beauty, we don't "fit the norm" and you'd be shocked by the inappropriate questions I have been asked by total strangers if I go out in just a scarf. I've had people tell me how sorry they are for what I'm going through....and then we have to have that awkward talk about how I don't have cancer when I really want to ask them why do I have to justify my look to you? Or my favorite, I actually had some random stranger ask me if my Dr had told me how much time I had left.
Since I've given up on treatment my hair has its moments where it grows out in random spots (kinda like baby hair) but for the most part, I know its not in the cards for me. I'm glad you got your miracle.
-
-
It's all good. The great thing in common is that we all have went through some sort of AA. I think that's pretty cool (or at least as cool as it can be) that even though none of us know each other we all went through some crap.
Yes, I said something similar in that not only was I lucky that my hair did indeed grow back (and it could always fall back out so I'm not kidding myself) is that I was also a male. It's not the best way to empathize, but whenever I felt bad about my hair I thought about what it must be like to be a female going through any form of AA. I couldn't even imagine being a teenage girl with all the crap teenagers in general have to go through.
Haha, the funny thing is--like you--when I got my hair back people came up to me and were like "so I didn't want to say anything, but did you have cancer and now it's gone?" or "Yeah, I was afraid to talk to you because I figured you were pissed off at the world."
It sucks, I don't want anyone to ever feel like crap because of this stuff, so if I came across in a wrong way I'm sorry too.
-
-
My name is Mark. I am 58. I have had Alopecia Universalis for over 45 yrs. I too went to a derm way back in 1968 when I first saw my hair falling out. My parents and I did not yet know what it was. He put me on Prednisone for a year or so, & my hair came back during the summer of 1971. I stopped taking the Prednisone but my hair started to fall out again and when I started the prednisone again it did not help. I have been hairless ever since. I know there are certain drugs with chemicals that seem to trigger something in the immune system that cause short term growth.
I was also diagnosed with an under active thyroid gland in 1991, Hypothyriodism, When I first started to take Levoxathyrine, a generic form of Syntheroid, a replacement drug that puts back what the thyroid is not producing, my hair started to come back on my legs. But after a year or so it fell out again and never came back.
Nonetheless, if you are going to see a doctor about this SEE A ENDOCRINEOLOGIST, AN INTERNAL MEDICINE SPECIALIST, NOT A DEMATOLOGIST. THIS IS A CONDITION OF THE AUTO-IMMUNE SYSTEM. Why did I use capitol letters? Because even though there is no long term cure for this condition, just short term snake oil and wishful thinking, people on here say they are seeing a dermatologist. This is an internal condition of the immune system. I should know. I went to an Endroconologist on and off for years. I have to admit that either doctor may tell you the same thing. I wish you all the luck in the world but I wouldn't be injecting my head for anything. Yes, I have heard about this procedure for years, decades. But it will not perm re-grow hair.
Thanks
Mark Hansen
-
-
YES. It is funny because I saw a PA in derm and he gave me injections. Then I went to a pretty good derm around here (but he's kind of a jerk) and he immediately ordered hormone tests. There is no way to know for sure, but the tests determined that my thyroid indeed could have been a trigger to symptoms of AA turning into AU. Dude is a jerk, but he called it and knew exactly what he was talking about.
-
-
I agree with mark.. my 18 year old grandson wa diagnosed with alopecia totalis.. by an endocronologist.. dermatologist was no help.. he did the steroid creams.. topical stuff.. monoxidil.. and it did nothing..
And Sharon i believe a better diet is what they need... i agree with you... i have him do the vitamins the endo had told him to take.. zinc, biotin and d3... and prayers... good luck to everyone...
Dee...
-
Permalink Reply by Lady Tee on
-
After going through treatment many years ago. It gave me false hope. I realized that it was in my best interested to stop treatment because it contributed to my deep depression. I did treatment for a long while with no results so in my mind what was the purpose? You are in titled to input on your own health. Just make sure you are being rational and not going against what my help or work for you. I would try it first and then draw a conclusion.
-
Permalink Reply by Joanne on
-
I have alopecia areata and feel that I am in a partnership with both my primary care provider and dermatologist regarding my treatment plan which includes irritants and excludes steroid injections. My treatment plan has resulted in hair growth since the photo that is shown but the growth does come and go. I personally would not stay with a primary care provider that passes judgement regarding alopecia treatment plans = I'd want them to be partners in all of my future care. I hope you can find a provider that cares for you in the way you would like and does not create a situation where you feel pressured for any type of care - those type of MDs do exist!
-
-
I have refused many medications for other illness over the years but my doctors have always been alright I have felt as I have always taken time to explain to them why I have made the choices and sometimes it is just that I do not feel that treatment is for me. As long we the treatment is not life threatening then we have right to decide what we are putting into our bodies as far as I am concerned, they all have possible side effects. My hair could actually be a side effect of one of my other meds so stand by what you feel is right !
© 2024 Created by Alopecia World.
Powered by
