Comment

Comment by ChrisC. Chicago, IL on February 26, 2013 at 10:59pm

Hi all, and welcome Caro. It is a devastating diagnosis and then. . . well. . . a year later, I just feel a bit numb. I have had a range of meds. . . steroids, Finestride, Plaquenil 200 mg once per day and now twice per day. INitially my derm prescribed just once and it didn't seem enough. Coming off of the steroids with just the low dose Plaquenil, I was losing alot of hair this fall. She upped the doseage to 200 mg twice a day and it has slowed things down. I think that Plaquenil is the first go-to defense for the dermatologists and I had been asking about Actos. She did not want to jump to that med without maxing the Plaquenil dosage. I have gotten to where I try not to think about it since it steals my essence. Good luck.

Comment by Lorn. New York, USA on February 26, 2013 at 8:53pm

Hi Caro - I am new to this website as well and live in the US. This is a horrible rare disease to have. I cried for 3 days after I self diagnosed myself compared to 1/2 hour of crying when I found out I needed open heart surgery due to a bacterial infection that blew out my mitral valve. I know - it's crazy - but it gives one an idea of how devestating it is. It's only hair - but somehow it's more than that. It affects our life style as well as our self image (in my opinion) and also makes me wonder how healthy I am. The few people I have told don't quite understand how I feel about this - there is the response that I can always get a wig - which upsets me.
I take plaquenil as well as an antibiotic for the inflammation. I am not sure - but I think it has slowed things down.

Comment by Kath UK on February 26, 2013 at 5:37pm

Hi Liz. I contacted CARF some time ago and I joined them. They send me information by email about when they are having their conferences etc but frankly so far I haven't really found them much use to me as it is all USA based - or seems to be. I didn't know that CARF would want a doctor to be present as part of a group!! That does seem a bit strange to me. I wonder what sort of 'group' they mean?

Comment by Liz on February 26, 2013 at 3:48pm

Has anyone had contact with the Cicatricial Alopecia Research Foundation and how did they find them? I contacted them regarding setting up a group close to wear I live but they seem very focused on who my doctor is. I've been told that I cant run a group as part of what they do unless a doctor is present which I disagree with x

Comment by Liz on February 26, 2013 at 7:53am

My hairloss have just taken a turn for the worse. I was losing loads, started Doxyclycline in late September for 6 weeks and then stopped. My hairloss slowed down and now has become worse so maybe the Doxycycline helped?! x

Comment by Caro UK on February 26, 2013 at 6:12am

I've just joined Celia's group. I've also been prescribed Hydroxcloroquine 200mgs but only once a day. Worried that this may not be enough to be effective.

Comment by Debs on February 26, 2013 at 5:55am

Rebecca, Dr Harries has told me to take 200mg twice a day to begin with, I know there are other ladies taking it twice a day and some just once. Rebecca are you also taking the doxycycline ?? and having steriod injections into scalp?? Liz, you don't know if the meds are making the FFA slow down/stop or if it would have done so anyway if you did nothing. This is one of the many problems with FFA and why it is so hard for derms to treat because getting evidence of meds that works really is tricky.

Comment by Heidi Short UK on February 25, 2013 at 3:35pm

I would like to meet up too Celia I would need some notice so that I could take time off work. I would probably come up by coach as its a long day up and back on your own driving. It would be great to all get together, we could be ladies that lunch!!

Comment by Kath UK on February 25, 2013 at 12:53pm

Good luck with plaquenil, Rebecca. I'd be interested to know how you get on with it as I have to see my dermatologist next week and if it is now a recognised treatment she might suggest it for me. I'm a terrible coward about taking medication, I'm afraid. I always worry about possible side-effects.

Comment by Liz on February 25, 2013 at 8:14am

Hi Alice. I dont do it very often because it makes me shudder but every few months I pull on some hair around the hairline (about 30/40 strands). If it falls out without any effort or pain I assume that my condition is still active.
x

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