Comment

Comment by Liz on February 27, 2013 at 10:54am

I have an indentation which starts at the point where my old hair line was. I've never had injections so maybe for some of us it is the condition itself which causes the indents.
x

Comment by ChrisC. Chicago, IL on February 27, 2013 at 10:26am

My indents got better. . . I had injections quite a bit from last November through June. I had a deep one that ran down my forehead. They are all filled in and when I transferred to Dr. Barbosa, she insisted that I stop the Clobetesol as well. the skin at my temples was very thin. I have used Protopic when inflammation pops up. But since taking the Plaquenil, the inflammation at my temples and above my ears has totally disappeared and the most worrisome is that the top of my scalp along the hairline is still showing red around the follicles and is thinning.

Comment by Alice on February 27, 2013 at 10:04am

I think tissue atrophy and loss of pigmentation are known side effects of cortisone injections, though not necessarily common. Years ago, I got a cort shot in my elbow for tendonitis. Not long after, I noticed the bone was very prominent and the skin had turned very white. The skin color finally came back but the tissue is still thinner than the other arm. I would imagine that de-pigmentation would not be noticeable on the scalp but tissue atrophy would look like dents. I believe my derm told me that long-term use of Clobetasol can cause the tissue to thin, too.

Comment by Debs on February 27, 2013 at 3:16am

Rebecca, I did ask about the indentation that the steriod injections leave and Dr Harries said they go but it can take several months... is that your experience? or do the dents stay forever? I don't fancy making my scalp look as you have put it 'like a skull'. Liz, I am so sorry your hair loss is bad at the moment, I know you are probably not going to be able to take the hydroxychloroquine but as you say maybe if you restart the doxycycline it was slow it down again. Welcome to the group Caro, we have already been chatting on the alopecia uk website. Glad you have also joined this group. xx

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

I'm alittle jealous of all the Brit ladies being able to get together. . . anyone in Chicago??

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

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