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Permalink Reply by Michelle on May 10, 2010 at 6:07am

Hi Ellen. well regarding your questions I can't answer most of them but in the first one: I don't remember that i had pain, what i do get is a tingling feeling a few days before it falls out.( it started again on Saturday and this morning when i rubbed over my head i got a few more spots.

On the shaving. I've been shaving my head for the last 2 months. First with at normal razor and someone on the site told me about the headblade range. Luck for me i found a stockist in South-Africa and started with the headblade it helps. and the lotions are great.

I hope it helps and that you get answers on all you questions

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Permalink Reply by Ellen Burns on May 10, 2010 at 6:10am

Michelle,

Thank you for your reply!! Tingling is a much better way to describe the feeling I think. I also realized that it could just be the pressure from laying in bed, I suppose hair does act as a buffer between your scalp and the pillow?? You were very helpful, thank you again!!

Oh and as far as shaving your head, I will definitely be needing to do more research if it comes to that, but I appreciate your tips! :)

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Permalink Reply by Jenna4 on May 10, 2010 at 9:20am

HI Ellen,
I think I can share my experieces to most of your questions:
--Yes, I have experienced pain where the hair fell out, my scalp was sore/tender and would be painful to touch. Rubbing it seemed to help a little. I also had to be careful not to have the shower water too hot.
--Yes, my scalp was also itchy...I think the first two are because of the inflammation of the roots.
--I was on a 3 week cycle of Prednisone and according to my derm. it was able to stop the attack on my hair follicles and my hair stopped falling out and I now have regrowth. I did not hav any negative side effects, although I understand there are many. I don't think I would want to be on Prednisone long-term.
-- I started using Cebetsol (spelling??) and dont' really know if it helped...
--I haven't done the injections, but there is a lot of information on this site about them.
--I shaved my head when I couldn't hide the spots anymore. It was the best thing I could have done! It is so liberating to take control. As soon as I shaved, I stopped obsessing about my spots and hair falling out...it was just there...I wear a wig to work and out in most public places. At home I am just "me". Hopefully someday soon I will be able to "come out" and be more open about my alopecia to my co-workers. I'm waiting for my two worlds to collide, then I'll have no choice.

Good luck to you and feel free to ask me any questions you might have!

Jenna

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Permalink Reply by Heather L on May 10, 2010 at 11:52am

Hello Ellen!

1. Yes I have experienced pain where hair was falling out- nothing severe.. just achy or tingling.

2. yes my bald spots itch often- derm. says that is a result of inflammation in the scalp. (same for aches/tingling)

3. No never took prednisone - derm says it is a short term solution with potential negative side effects.

4. Yes I have huge positive results from Olux foam (spots stay smaller and hair re-grows quicker)

5. Yes I've done lots of injections- I found there to be little difference in results between the foam and injections. So now I stick to foam only. However my experience with the injections was not a bad one... I didn't find them too painful. They did help BUT if they were given to often in the same spot I would get "Dells" ( little dents in the scalp from atrophy-- which all did come back within 6 months)

6.hmmm such a personal choice. I have never shaved my head - but for the most part can hide my spots. So for me I think I would only go that route when I had no choice left... say less than 50% of hair left or if I just simply could no longer work with it and had several areas of scalp showing... However something that I hold onto if that should happen is the fact that the vast majority of people on this site once they did shave their head .... felt empowered and not regret. shew!! I would imagine it is like a lot of things in life we are terrified of... the anxiety around it is worse than the actual event.??

Hope that helps!

Heather

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Permalink Reply by Lillian (Tracy-mom) on May 10, 2010 at 3:04pm

My daughter (9 Years Old) has had some itching and pain during active AA episodes.

We have used different ointment without any definitive results. We tried topical cortizone which didn't even stop the AA from spreading. We tried Rogaine for a time. Right now we are trying Thymskin but we aren't seeing a whole lot of growth. We have been using it for 4 months and so far we just have very fine peach fuzz that I need a magnifying glass to see.


She did get cortizone shots for three months right after she was diagnosed. For her, they were very painful and her head was sensitive for weeks afterward. The hair did grow back in the bald spots but she lost hair in new place and now some hair in the original spots have fallen out again within 6 months of growing in. So it wasn't worth it for her.

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Permalink Reply by Natalie on May 10, 2010 at 6:53pm

Hi Ellen,

Yup, my hair always hurt when it was falling out (even my eyebrows)! I did take prendisone, and I DO NOT RECOMMEND taking it. The side effects are terrible (weight gain, bloating, dizziness) and although it helped my hair grow in temporarily, as soon as I went off the pills it would fall out twice as bad :( I was on and off prendisone for about 1.5 years. Cortisone injections are definitely worth it if you have a few, small patches. Bigger patches cannot be helped by cortisone. Also, they are a bit painful. Foam and ointment was worthless for me. My perspective on shaving my head is completely positive :) I wish I would have shaved it sooner! I felt so sick all the time with my patchy, stringy hair, and once I shaved it I felt like the old me again. I didn't dread going into the shower or brushing my hair and seeing it all fall out. It is, however, a very personal decision that takes some thinking about. But I say GO FOR IT! Feel free to ask any other questions - I would love to help :)

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Permalink Reply by Ellen Burns on May 11, 2010 at 6:20am

Thanks so much for the feedback!! I'll comment back soon, just wanted to say I really appreciate the answers to my questions!! :)

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Permalink Reply by Jade Martinez on May 11, 2010 at 8:04am

Hi Ellen,

Some answers to your questions from experience:

---Has anyone experienced pain where hair is falling out?
I had really bad inflammation when my hair started shedding this time around. It was pink and felt sunburnt. It wasn't painful, but more uncomfortable. Also, it felt like my hair was pulling when I tied it up, even though it was tied up really loosely.

--- My bald spots seem to be itching, is this normal? Or is my scalp just dry...
I think this is normal. I usually get some weird scalp conditions when my hair is shedding. My scalp is usually very dry and flaky.

--- Has anyone else taken Prednisone? If so, experienced any side-effects? Did it work?
I tooked it for 3 months last year. Shedding slowed down heaps by the 3rd week and had full regrowth. I have now lost all regrowth and more. Side effects: Mood swings, irregular periods, chest pains, weight gain, face blew up. After I finished it, I was really fatigued! Couldn't stop sleeping. Definitely won't be taking this again.

--- Any positive results from the Foam or Ointment?

--- Anyone who has had Cortisone Injections: What are your thoughts? Painful? Worth it? Expensive??
I've had one session of theses 2 months ago. I could feel regrowth within 3 weeks. It now has some colour to it. It hurt more than I was expecting it to. I was given the option of getting more, but said no because it seemed like I was getting regrowth in other areas, although slow.

--- Perspectives & Opinions on shaving one's head.
I've been thinking of doing this for the past few months. It would definitely be a great not freaking out everytime I see hair in places other than my head!

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Permalink Reply by Ellen Burns on May 12, 2010 at 3:02am

I'm glad to know that it's fairly normal to have tender/sore spots where hair is falling out, although it makes me a bit disappointed because it means my hair is still falling out... I'm having a few of the side effects mentioned with the Prednisone. Insomnia for sure as well as mood swings and the irregular period, although that could possibly be just me. I'm only going to be on Prednisone for 2 weeks, so I'm not sure if it'll help or make things worse but having read some of the side effects I'm slightly nervous I even began... Hindsight I probably should have talked to a cardiologist but 6 days left. I've already began like, decreasing my dosages so I don't even really understand how that could help. As I said above, my head is super sensitive and I've been wearing hats religiously, and this afternoon I went to take a peek at my bald spot(s) and realized I was shedding, A LOT. So I'm not sure if my hat is holding my hair "in place" and then bam, it's free to fall? "otherwise you get to watch your hair fall out in your hands when you touch it, or on your pillow in the morning, even in the shower when you wash your hair..." Jennifer you are exactly right with this... I see it in my hands, on the bathroom floor, all over my pillow/bed. It's just like, dang. I lost a lot of hair... That's what gets to be frustrating and like, depressing. The reality of it seems to sink in seeing my hair all over the place like that. I'm not sure what to think about Cortisone Injections, it makes me nervous to have steroids shot into my head... Another question for the cardiologist I suppose? I think I hit most of the responses. I want to say thank you again and I seriously appreciate the comments, you all are the best!! :)

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