Comment

Comment by Debs on March 27, 2013 at 8:58am

I think to be honest I was very down all of 2012 because of this diagnosis, it has taken me a full year to feel in anyway like my normal self again. I have been using this group and the Alopeica UK forum to hold things together and now I am seeing Dr Harries I feel much more relaxed, I can now feel that I am doing everything possible and I can't expect any more of myself. I am trying to be kind to myself. I am giving myself more time, I have resigned from some of the voluntry work I usually do, I am not studying for any qualifications and I am just doing my salaried job (which is part time) and having plenty of lunches/theatre trips etc.. to perk myself up. It is tough having this condition and I think in some ways I have to take it one week at a time but I do feel a great deal better than in 2012.

Comment by PamW San Diego, CA, USA on March 27, 2013 at 6:33am

Hi everyone. My derm specialist at UCSD ( which is a teaching hospital, advised against the shots because he didn't think the results were with the pain and denting. also, both of my doctors cautioned against the over use of Clobetasol because it can cause thinning of the skin. I am interested, Lorn, about minoxidyl. I am more distressed about what is happening in the center part of my scalp than the temples and bangs (fringe). Does it make your hair thicker? From what I read, people don't really experience much in terms of regrowth, but I have heard some favorable comments about minoxidyl making your hair feel thicker. My advice about the eyebrows is to go for permanent makeup, but research, research, research. I really like mine. They are too light right now, and I will have a touch up on Friday. Judy, are you back in San Diego? Do you want to meet?

Comment by Jodie UK on March 27, 2013 at 6:21am

Hi ladies , I have been a member since February and have been reading through all the comments and treatments, I have had FFA for at least 6yrs and been through all the ups and downs and most of the treatments that are mentioned, I think most of the treatments might slow this condition down but I have been told it will eventually burn out??? I was at my derm on Monday and she told me she now has 2 men with FFA and more people are being diagnosed every day. There is a world conference being held in Edinburgh in may and FFA will be the main topic of this conference, so at least it is now being recognised and hopefully they will find a cure, or at least some effective treatment

Comment by Jules UK on March 27, 2013 at 5:22am

Hi all, at my next appt with Dr Harries, I will have the option of injections. Does anyone really think they've helped? From reading posts here, there seem to be lots of cons to the treatment but, as is the pattern with all our meds I suppose, no 'pros'. I'm trying to decide how far to go with treatments or whether to gracefully submit to FFA, which is what hubby has always thought. Just get on with life and not be defined by this condition. Debs, that's what is so heartening about your attitude. It's not easy, but you seem to have a no fuss way of dealing with it. And you look fab! X

Comment by Liz on March 27, 2013 at 4:34am

Hi Debs. Can anyone put a picture of thier indentations online? Only I have an indentation caused by the condidtion itself. I'd just like to compare the 2 :o)
x

Comment by Debs on March 27, 2013 at 3:53am

STEROID INJECTIONS - has anyone that has used the steriod injections on the scalp had indentations that have now filled out and healed. Lots of ladies are reporting dents and marks on their skin after these shots - but do these dents go away after a few months??? I asked Dr Harries and he said it can take several months for the dents to heal but I would like confirmation from ladies that have used them. And OMG we now have 50 ladies in this group - we can reassure ourselves we are accessing info from all over the world in this condition.

Comment by Lorn. New York, USA on March 26, 2013 at 8:54pm

Hi everybody -
Chrisy - My doctor told me to stop using the desonide on my eyebrows because I have been using it for about 7 months, he didn't want to put me at risk for cataracts. I believe it has minimally worked for me (eyerows) as well as the shots - but at the moment, my dermatologist
has stopped the shots as well. My skin has thinned and has become rather dented, At the moment, I am taking 100 mg of doxycyc 2x/day and the 200 mg plaquenel 2x/day. I also put 5% minoxidil 2x/day on eyebrows and behind hairline and hydrocortisone butyrate topical solution behind the hairline 2x/day. Mentally, I feel better about stopping the shots and the desonide - at least for the time being. I think that this regimen has kept the hairloss at bay and some hair on the temple region came back as well as a little eyebrow hair. I see a dermotologist in the clinic in one month and the very specialized hair dermatologist in 4 months.

Regarding my eyebrows, I am taking Celia's advice and looking into tattoos. I thank everyone for their input.

I emailed Wake Forest and put my name on the list. I heard back from them - it hasn't started but they asked me for my info.

Comment by Caro UK on March 26, 2013 at 5:00pm

Rebecca I've just read your post. Very sorry to learn of your bad experience with the steroid injections. As your specialist said, once hair follicles have been scarred there is no possibility of hair regrowth from these areas. All that can be done is to try to reduce any inflammation in the remaining hair follicles. I am taking Planquenil and while I know that it may not work, I am encouraged by the knowledge that there is a 50% sucess rate. Rebecca I do hope your skin recovers in time and all the best for your further treatment.

Comment by Debs on March 26, 2013 at 6:02am

Rebecca, so sorry you have been through all those shots for no reason, very good news though that the plaqeunil has a 50% success rate and also that your derm in Berlin says that steroids (in the right place) can help. I think you should take photos of your scalp where this doctor injected in error and see if you can get some compensation from the health authority. Good luck with your treatment from now on.

Comment by Debs on March 26, 2013 at 5:59am

Heidi, as you have been diagnosed with FFA by a doctor in the UK I would suggest you ring Dr Harries receptionist to get a message to him and ask if you can do the study, if you give her your details she can action this and pop a survey in the post to you if he agrees 0161 206 1012.

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