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To Prednisone or not to Prednisone- that is the question
I have been suffering from AA since September 2015. I have been getting injections monthly, but my hair loss continues to spread--roughly half of my hair is gone. Even the hair that has started to grow in appears to just fall right out again.
My question is-- is Prednisone worth it? My doctor says she could put me on it for 6 weeks, but filled me in on the side effects. She says it works for some, but not for others. If my hair loss is stopped in its tracks, will it just fall right out again after the 6 weeks of treatment is up? Is 6 weeks even long enough to experience the roughest of the side effects?
For those who have tried it, what was your experience?
I'm wondering if I should forgo the Prednisone and embrace the beauty of wigs-- I just don't want to completely write off Prednisone if it has been worth it for some.
Thank you!!
Replies to This Discussion
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Permalink Reply by ZandyPants on
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Hello,
I am wondering the exact same thing. I am pregnant and aving my baby in about 2 weeks, after which my doctors have advised that I can start Prednisone, which they say will not have any effect on breastfeeding , but might have some other side effects on me (even if its just a 6 week course)
I have not been able to do any sort of steroid treatment or even injections as I have been pregnant while my hair loss has gotten progressively worse and worse over the past 3 months and now I feel desperate and willing to try anything
Thanks for the advice!
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Permalink Reply by natural9 on
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Hi Zandy Pants,
I'm so sorry to read you're going thru this too, like I did. After both my pregnancies I did the injections and it cause me to have dark pigmentation due to skin thinning, weight gain and the moon face. I was a visual mess on top of the hair loss it put me in a tail spin. What ever you and your doctor decide, just remember you might go thru some body changes and know it's temporary. I hope you have an easy delivery and you have minimal hair loss. Sending you good vibes.
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Hi natural9. Have you had bouts of alopecia before even getting pregnant? As child forexample?
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That is a difficult decision. I can only tell you my experience. 20 years ago while in Nursing School, I lost all my hair. It happened to another student also. What we had in common was we were both older students with skin conditions and stress. She had the injections because she had benefits. I didn't have benefits so I didn't go for the injections. Our hair grew back. Fast forward 20 years. My mom became ill and the stress of it caused my hair to fall out again. This time is was alopecia universalis. That was 5 years ago. Now I have 3/4 of my hair back. Eyebrows, eyelashes, legs everywhere. I can almost go wig free. I have had fun wearing wigs. Low maintenance, you are ready to go in a moment and your hair always looks good LOL. Prednisone is a bandaid with side effects. It really is a personal decision but I wish you blessings.
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Permalink Reply by OldandCranky on
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Hello lovely!!
I don't visit the forum as often as I'd like as work keeps me crazy busy, BUT when I saw the notification of your question I could not ignore it.
From my experience stay as far away from pred as you can unless it is prescribed for life threatening reasons ie asthma.
I have AU and have been bald for over four years. I have also experienced a few conditions associated with autoimmunity. The worst of which is the eczema ... Even worse than the hair loss! Mainstream medicine prescribes pred as it is the only thing they know will act as a short term band aid.. Initially you feel great, but then the side effects start . After three years of taking pred I can now say I will never take it again.
My skin is paper thin.. A slight scrape and a bleed and bruise... I look like an 80 year old woman.
I suffered palpitations and ended up in hospital with atrial fibrillation.. Not fun.
The worst part? It is not a cure .. I'm still bald and still get eczema.
At the end of the day my advise is to keep yourself healthy mind and body and buy the best wig you can afford.
xx
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Hi,
I have been suffering from AA for more than 20 years. At the beginning I was too young and I coudn't decide about treatment. I got a lot of Prednisone for years, but it was not worth. Now I am still suffering side effects (for instance, I had a cataract surgery at 40).
Now I don't receive any treatment. I have no hair, but I am infinitely happier. I have assumed that this is me, and the people who love me will love me anyway. (By the way, my daughter loves my bald head and is very proud of it).
(Please excuse my bad English: I am Spanish).
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Hi! I am 14 and have had alopecia since I was 3. At 6 I was universalis. I started taking Sulfasalazine 500 mg 3x day and after about 6 months my hair started growing back. Sulfasalazine isn't perfect--I do have some flares but when that happens, I take prednisone along with the Sulfasalazine. This combo has worked for me. My hair is long now. The prednisone does have some
Side effects like being really hungry all the time so i have to make healthy choices so I don't gain too much weight. That's really it for me. I think it's totally worth it because now I have all the hair on my head and legs and my eyelashes and eyebrows are slowly coming back after my last flare. I also have to get my eyes checked and my blood checked often to make sure my body is handling all the medication well. Overall I would say try it and see how your body handles it.
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Permalink Reply by Kim on
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Hi Claire. So sorry to hear you are going through this awful battle. It went through the same scenario about 4 years ago. My dermatologist put me on high doses of prednisone to stop the rapid hair loss. I had also lost about 3/ 4 of my hair by then. My side effect was a "moon face". My face seemed to take on this bizarre shape, slowly but surely. Not cool at all! I eventually gave up the tablets as it wasn't doing anything positive for me & it def didnt stop the loss or promote growth. I then found a doctor who swears he could and had successfully treated alopecia patients with Cortisone injections into the scalp. I went for a course of this, felt very positive, but soon after I lost even more hair. Since then I have undergone no further treatments, and resided to the fact that I had to start wearing wigs. I have (mostly) accepted the fact that there is no successful treatment to date and that I just need to be grateful that I have the option of good quality wigs. The wig journey for me was stressful and tiresome & it takes some time until you find what works for you and your budget and finding a trustful and reliable supplier. I wish to have my own hair back everyday and really dislike wearing wigs...but this is what I have to deal with in this stage of my life and it could always be much worse. Wishing you strength and courage! Kim, Cape Town
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Permalink Reply by Andrea on
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My hair loss was associated with Lupus, and Prednisone is pretty much assumed you'd be on it for that. I was extremely sick. I'm not exaggerating when I say I almost died. I'd become emaciated, lost my hair, and was almost bedridden for about 7 months. At one point, I'd taken a short term very aggressive dose of corticosteroids. That basically gave me a fighting chance. However, my personal experience with the drug is that no benefit (feeling good physically) outweighs the GUARANTEED side effects when taking it for longer than 7-10 days. You will gain weight. That is not a question. Your emotions will become erratic. Also not a question. There is strong chance that your relationships will suffer. For me, emotional health is much more important than physical health. Human relationships are more important to me as well. You need to decide if you are willing to sacrifice those things for hair. I wasn't willing to sacrifice those and I never will again except for very short term courses under the most dire of circumstances.
Oh...and when I was on that short term aggressive dose, my hair loss continued, though that was hardly my biggest concern at the time.
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Permalink Reply by Pam D. on
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Shots worked for me twice, or at least I thought they did; I lost my hair a third time over a year ago and nothing has worked this time. When the shots didn't work, I tried Plaquenil; I've given up trying. If your hair grows back it won't come in like you shaved your head and all come back at the same time, it will come back in areas and spread; it will take months. When my hair grew back, I had it for about 5 months before it started to fall out again. The last time it came out very slowly, then in a matter of a week or two, the rest of it went.
For me, I found getting my hair back and wondering if and when it would fall out again was more stressful than accepting my life as it is now.
I wear wigs, but prefer hats or scarves, or a combo of the two. I have fake eyebrows and fake eyelashes, but usually just draw them on. I don't look quite the same as I used to, but I've gotten used to the "new" me and so hasn't everyone else who knows me.
I think most of us are going to try anything in the hopes of getting our hair back; for some of us I think it is a wasted effort and eventually you have to come to terms with it.
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