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Should I try corticosteroids & an anti malarial or get a freedom wig?
hard drugs with lots of side effects I'm not sure if I should? I've heard a high dose of corticosteroids can cause bone loss and weigh gain and anti malarials and cause eye problems. I miss my hair but are the side effect worse then Having AA.
I just wanted to ask if any one has used one or both of these drugs? And if so did they work for you? Also if someone has used a freedom wig how do you like it? I'm just really unsure which road I should take :/
Thanks so much!
Replies to This Discussion
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Permalink Reply by Deeann on
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Hi there. I haven't taken either of these drugs, nor do I wear a Freedom wig. I just wanted to comment that when my hair first grew back, it was after years of having no hair and then it spontaneously grew without any treatment at all. Alopecia is just so fickle. It's possible the drugs will help and you'll have regrowth, but you're right in thinking about the long term effects (bone loss, weight gain...). Good luck with your decision. I'm sure a Freedom wig-wearer will comment about their experience soon.
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Permalink Reply by Cindie on
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Some of these drugs can also cause cancer later on.......having hair is great, but having good health is better.......I 'd wear a wig before I would subject my entire body to the deleterious side effects of these drugs. But that is just my opinion.
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Permalink Reply by Rose K on
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Hi Elaine,
Years ago I got steroid injections monthly in my hip along with multiple shots in my scalp. I continued this regiment for 12 years with no growth. My derm presented me to a state-wide meeting to discuss using meds for AA. End result was every derm said "get off steroids" warning that in future there could be damage to bone density, weight control & early onset cataracts. I stopped all treatment after hearing them. 20 yrs later, I have bone loss & cataracts - telling me that it wasn't worth it trying to grow hair. Have been very comfortable w/my AA since then, accepted it completely & continue wearing my gorgeous Freedom Wigs. Pls consider the long term side effects before starting any treatment. Best to you.
Rose
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Permalink Reply by Karen Smith on
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If you try the drugs don't stay on them for more than a couple of months and have close monitoring. The treatments work for some people some of the time. Steroid shots worked for my daughter the first time but not when it recurred.
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Permalink Reply by Emory on
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Hey there,
I was on Prednisone and CellCept for 2 months when my hair first started falling out to try and prevent me from going into AU. Unfortunately, we coudln't stop it. But to be honest, the side effects of the medicine were worse than the hair falling out. I actually lost weight because I was nauseous most of the day. I was jittery and moody (which is really hard for a surgeon with a husband and a 1 year old at home). I just didn't feel like myself. As for the long term effects, as long as you don't stay on the meds for more than a few months, I wouldn't worry too much about them. Chronic steroids can increase osteoporosis but not so much with a short course. The bottom line is that I went into AU when I started treatment because that was my disease course. I couldn't stop it so the medicines didn't help but at least I know I did everything I could to try and help.
As for wigs, I wear a custom lace front European hair wig that looks really nature. I met with both the Freedom and Follea reps and decided to order a Follea gripper. There are so many different types of wigs out there and it's a matter of what wig fits your lifestyle and price range.
em
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Permalink Reply by Elaine on
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Thanks for all your help. I have tried the steroid injections 3 different times and they never worked. That's why my doctor wants me to try the oral drugs. She only wants me to do the steroids for 3 months at 30mg a day. She also was going to put me on a bone pill while I'm on the steroid. Which has so side effects too :/ I have to pills sitting right here but I'm not sure still. I think since I have such a bad feeling about them maybe I shouldn't take them. Also after what I heard from all of you that maybe the best idea.
As for the freedom wig I'm going to call a dealer today and ask some questions. I like wearing clip ins and hair pieces like I have in my profile picture. Now my hair is too thin for them but full wigs bug me! I work out everyday and figure skate so I really need something that will stay on my head. Right now when I skate I wear a ear covering headband. Which works since its cold but when I do I spin I have to hold it so it doesn't fly off :(
I still have the hair on top so I can hide it but not for too much longer I need to make a choice soon. I'm looking at the bright side. If I get a nice wig it will never go gray and I won't have to shave my legs :)
Thank you for your comments! It means a lot :D
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Hi Elaine
Ask your Freedom Independent Agent as many things as you feel you need answered. There is a lot to investigate when it comes to a good hairpiece.
Ask about security, exercise, hair quality, different styling options, swimming, cost effectiveness (what is a reasonable time you could expect your Freedom Hairpiece to last), how to look after a Freedom hairpiece etc.
Have fun.
Rosy
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Rosy, I called and asked all the questions. They sound great! She told me to sleep on it before I do it to make sure I'm 100% sure. It sounds like a good way to go. Still thinking about it they do cost a lot!
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Permalink Reply by Christine on
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Elaine,
I think you are making the right choice, I can't wait to hear what you find out with the wigs, I'm right behind you, you and I seem to be struggling with the same things right now with what's left of our hair, I'm not as active as you with the skating and all, but I love walking, and I wear the same ear cover thing as you sounds like, because of the wind, I'm really insecure out there, with winter over and summer here, it doesn't make a lot of sense to wear it on my walks, I like the idea of the freedom type of wigs, but wonder about the comfort (something I noticed about the wig I have is it's so tight on my head, gives me a headache)I wonder about the heat of them too. There is so much to choose from, thank goodness. Keep posting or msg. Me what you find out. It's really encouraging to me, and I feel much less alone in this. Thanks!:)
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Christine, I found a freedom hair dealer in Portland Oregon named Donna. She has the same AA pattern as us and she also just couldn't really hide it any more. She loves the freedom wigs so much she got into selling them right away. She also comes to the Seattle area because she has clients up here. I'm still not a 100% sure but I'm leaning towards the vacuum wig. The price is high but it seems worth it to me. 10 inches or shorter is $3,900 and over 10 is $4,600. They last about 4 years and the look so really! The best part is you can put them in a high ponytail. I haven't been able to do that in years! Like most people with AA every little hair on our head we want to hold on to. So the hardest part for me will be cutting off the hair I still have. I know I will cry :'(
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Permalink Reply by Alex on
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Hello Elaine, I understand what you are going through. I've done many a things to get my hair back including a total of 5 cortizon injections in each eyelid to grow back some eyelashes and 10 in each eyebrow to grow some brows as well. Not to mention all of the ones in my scalp. The pain was pretty bad and I can definitely tell you that any kind of side effects are not worth it. It was really hard for me during the first 3 years of my 10 year ongoing struggle, but New Year of 2006 I decided to let everyone know that I have Alopecia and I'm not scared to hide it. When I finally accepted what is happening I got results without any treatment. Although my eyelashes and eyebrows have not grown back in the slightest, my scalp has fully recovered. I think because I experienced a lot less stress after coming out of the Alopecia closest and let the world know that I'm bald and beautiful. I read one of your other posts, and friends really do have a hard time understanding what us Alopecians are going through. That's why this great site is here, and we are all here to hear and listen because we truly understand.
Best,
Alex
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Permalink Reply by Amanda on
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Hi Elaine, I have early LPP (scaring alopecia) and have been getting the scalp injections for about three months. I am on Plaquinil (anti malarial) for abount a month now. I also use a shampoo and tonic for my scalp to reduce the swelling and aggravation caused by LPP. (funny, I have never experienced the symptoms, only thinning hair) I am having my blood tested every month and my eyes tested every six months. So far so good. All my tests have come back perfect. All the doctors and the specialists have told me that they monitor closely to make sure that I won't have the long term effects and the plan is to halt the LPP with the hopes that I can reduce all the heavy drugs and treatments. I consider myself a natural person but in this case, I feel strongly that I want to try these treatments first to see if I can halt the LPP.
So...today I got my hair done and she said that she sees LOTS of new growth. This is especially good news for me because my hair will not grow back in the effected areas. Ever.
Long story short, I am hanging on to this regime for a bit. I still plan for the fact that I may be bald or wear wigs one day. Either way, I know I cAn channel the strength of all the amazing people on this site and will be able to handle whatever life throws my way! I know you will chose the best
option for you!
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