If you are around on the afternoon of Saturday 19th March Alopecia UK has a group meeting in London.
If you want more details please contact me

Kathryn

Hi Steve,

Samantha's process was different. The DCP is a bit different of a process from my understanding and the chemical is slightly different. Samantha did have the sensitization on her arm with the 2% and immediately had the reaction and then her arm blistered 10 days later. We had to wait several weeks before the doctor would try the scalp. Once we put it on the scalp the doctor did a small size area, the size of a quarter. She got a red rash and her arm began to flare up and the spot almost blistered. we waited several weeks again and did smaller area about a month later. she just got a red, sunburn red reaction and was itchy. We did the 2% for a few months. After about 2 months we went on to weekly treatments. A few months later Sam developed a full body rash. the doctor decreased to 1% and we waited several weeks to resume treatment and then her hair started to grow. We now do the treatment 2-3 times a week and her hair is nearly all back and her eyebrows are growing now. the only thing we do on the brows is put a cream on twice a week. That we started in Aug. We are approaching 2 yrs now that we began the treatment. My page shows different stages of the regrowth. At no time did we do more then a quarter of her scalp at once and we rotated the areas around her head each time.

Good luck with the treatment and let me know if you have any questions.
Cindy

Hi Steve, my name is Cindy and I am mom to a daughter with this condition. I came across a post about DCP you wrote. Are you giving it a try? My daughter has been doing a sister treatment called SADBE and it is working for her. She has nearly all her hair back and her eyebrows are growing in now. Our doctor said it was 70-80% effective. Please let me know if you have any questions.

hello, there! :-)

Hey Steve,

Checking in to see how things are going with you. I hope okay.

Jeffrey

Hi Steve

I'm doing ok today but who knows how I'll be tomorrow. This AA has got me so up and down. It's driving me insane at times.

I can see some regrowth in 3 of my spots. 1 has some fine white hair and my wife tells me that there is some dark hair coming through but I can't really see it. 2 other spots have got a fair bit of thicker white (almost wiry) hair in them with a small amount of dark hair coming through so that's made me feel a little better. I'm still finding new spots and noticing some getting bigger. It get me so pissed off and down at times.

Who knows what is working out of all of the treatments???

I'm still using the dermovate cream daily and am seeing the NHS dermatalogist on the 21st.

I'm seeing a trichologist weekly and she's doing a massage treatment and a heat treatment which is meant to stimulate new growth.

I'm seeing a holistic healer on a monthly basis and I've got a "remedy" (2 tablets) to take on a weekly basis.

If I was going to drop anything it would be the holistic treatment as I'm not even sure how it's supposed to work (and is quite expensive).

You'll need to let me know how you get on with the injections. Are you getting this through the NHS derm? (apologies if you've told me this before).

I'm hoping that the NHS derm isn't too p'd off with me when I tell him that I didn't follow his treatment and took the advice of a private derm.

How are you doing? Have you seen any improvement with your patches?

Hi Steve

I wasn't given a time limit on the use of the dermovate cream. I was just told by the private dermatologist to use it once a day and keep my NHS appointment (which was 9 weeks away at that time).

I buried my head in the sand too when the patch appeared on my beard almost 1 year ago. I didn't think much of it as I didn't have a heavy growth and wouldn't have grown a beard anyway. Even when the patch appeared behind my right ear I waited over 3 months before asking my doctor about it. It was treated as a fungal infection at first but it obviously wasn't that. I was then referred to the hospital and told to wait 3 months as it wasn't classed as urgent. By this point the patch behind my ear was getting really big and a patch the size of a 5p piece appeared overnight on the top of my head.

The patch on my beard still seems to be getting bigger to me, but I can see some fine white hairs coming through. That is really good that you've had regrowth on your beard and eyebrow. A really positive sign.

I'm going back to the private derm this week as I found her to be very reassuring. I want her to check the progress of the patches where I've been using the cream for almost 3 weeks now, and ask if there's anything that can be done to stop the smaller ones growing as the dermovate doesn't seem to help with this.

Keep in touch
Cheers
Robert

Hi Steve

I've been using the dermovate cream for just over 2 weeks now and have some fine white hair in my two biggest patches. There was some fluff in one of them before I used the dermovate so it might not all be down to the cream. I can't see anything in patch on the top of my head but my wife assures me that there is some longer white fluff there too, and this patch had only appeared a short while before I started using the cream so I'm crediting the cream with that.

I haven't found the dermovate to be that effective in making my patches stop growing. Two patches appeared just over two weeks ago and have grown quite rapidly since.

I found the start of 3 other possible patches on Thursday so I'm going back to the private dermatologist this week to ask her advice on if there's anything to stop these ones growing. I'll try the steroid injections if need be.

One thing I would recommend for you is to do as much as you can to try to put your mind at rest. If you think that you need a second opinion from a private dermatologist then do it. You're not wasting your time and it doesn't close the door to the NHS treatment. Some people can sit back and let the alopecia run it's course without seeking treatment, but I can't sit back and do nothing about it. My mind won't settle. I envy those who have reached acceptance and I'm sure I'll get there someday. I don't know what stage you're at but do what you need to do.

I've now got a patch on my beard, 6 patches on the back of my head (3 of them are really small right now), and one on the top of my head towards the back. Where are yours?

Good luck with this. If you want to ask any questions or vent your frustration then feel free to get in touch.

Cheers
Robert

Hi Steve

If you don't mind me asking, which cream have you to use for 6 weeks?

You'll have seen from my blog that I felt a bit fobbed off by the NHS dermatologist, and felt that the private dermatologist took a lot more time to investigate and explain what was happening. I'm glad I saw the private one but will keep my NHS appointments.

Hope you're doing well
Cheers
Robert