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Frontal Fibrosing Alopecia/scarring Alopecia

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te.rayz View Drop Down
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Joined: 24/October/2012
Location: Leeds
Points: 140
Post Options Post Options   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 14/March/2013 at 1:44pm
Hi CD -

Thanks for keeping us updated. Interesting to read the different approach by your consultant; as you know I have LPP yet oral steroids were not prescribed. I hope there is improvement for you and please let us know how you get on.
Incidentally, are the weekly blood pressure checks a separate issue or indeed linked with LPP?


Hi All with scarring alopecia -

Regarding closure of this forum: May I say I am worried what will happen to us when we move to Healthunlocked - some may not adapt to new forum and some could opt to move elsewhere. Being part of this small group of fellow scarring alopecians I would dearly like us to stay together however really not sure how the new forum will operate and whether it will allow us to replicate what we have here! I've not registered over there because at present it does not function in the same way as this forum.
check out: Forum Topic >> The New Forum

te.rayz

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Cailin deas View Drop Down
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Joined: 19/February/2013
Location: Guildford
Points: 8
Post Options Post Options   Quote Cailin deas Quote  Post ReplyReply Direct Link To This Post Posted: 14/March/2013 at 6:00pm
Hi Te.rayz
I assumed it was because of medication. I have a GP appointment tomorrow - to talk through the consultant's report and get a blood test and blood pressure check and medication also. So will know more tomorrow.

CD x
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Seni View Drop Down
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Joined: 08/September/2012
Location: Surrey
Points: 272
Post Options Post Options   Quote Seni Quote  Post ReplyReply Direct Link To This Post Posted: 15/March/2013 at 3:44pm
RE THE CLOSING OF THIS FORUM

I also belong to the www.alopciaworld.com site.

We have a group called 'frontal fibrosing alopecia'

and

there is also a group called 'cicatrical alopecia' for anyone with a scarring alopecia.

The 'frontal fibrosing alopecia' group started last June by a fab lady called Celia, we now number 48. We are all very supportive just like this site and we share all the info our respective dermatologists give us. Because of this group I have been given info that has allowed me to be empowered, change doctors and begin drug treatment. I would suggest anyone with scarring alopecia of any type checkout these 2 groups to get continued support for what appears to be quite rare alopecias.

Seni
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te.rayz View Drop Down
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Joined: 24/October/2012
Location: Leeds
Points: 140
Post Options Post Options   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 17/March/2013 at 12:46am

Hello Seni

 

Many thanks for your pre-emptive message . . . .  I was just intending to ask you for the details of your other group !!

 
I've saved address into my favourites so when eventually the sad day arrives  Unhappy  and the curtain closes on this forum  Unhappy  I will give serious consideration to moving over there !
 
Part of me is still holding out for a reprieve here . . .
te.rayz
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Autumn1 View Drop Down
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Joined: 30/January/2013
Location: Staffordshire
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Post Options Post Options   Quote Autumn1 Quote  Post ReplyReply Direct Link To This Post Posted: 17/March/2013 at 12:26pm
Hi te.rayz

How are you?

I've just found out from your post that this forum is to close. Why is this happening?
Seni told me about the other group and I have joined. I can throughly recommend it. There are some lovely people on there and as Seni says, a lot of sharing of experiences and discussion of current treatments which is so helpful.Smile



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Cailin deas View Drop Down
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Post Options Post Options   Quote Cailin deas Quote  Post ReplyReply Direct Link To This Post Posted: 18/March/2013 at 12:01pm
HI ALL,
Had my follow up with my GP. I had opted to see a different GP at the surgery rather than than original one I had seen in September.She was honest and frank about her lack of knowledge on the condition and her need to go away and look up information and seek advice.
She suggested that the blood pressure checks could be done every 3weeks while I am taking Prednisolene.
She had a good look at all areas of my scalp as I felt it was important that we understood that the thinning and patchy areas were never going to grow back.And this was my difficultly!In all I left feeling okay - I understood what I'm facing . I just need to be positive not concentrate on the negatives!See how the medication worked out..
Well what a shocker- I'm completely overwhelmed by the sheer raw emotion I feel.My emotions are all over the place just simmering away below the surface ready to leap out at any moment!I have spent the last 2days either crying or struggling to control my tears, and giving myself a good talking to!I couldn't possibly have any more tears - and besides they didn't change anything for me !
So a new day today, new start - positive thinking!
CD
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Seni View Drop Down
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Joined: 08/September/2012
Location: Surrey
Points: 272
Post Options Post Options   Quote Seni Quote  Post ReplyReply Direct Link To This Post Posted: 18/March/2013 at 5:04pm
TeRayz I know you had success with hydrochloroquine sulphate, which I have now been taking for 10 days.  Can I ask you... did you have any of the streroid injections into your scalp as well?  or did you only use the hydroxy...
 
I am asking because there are several ladies on the other forum I am a part of that are using the steriod injections for FFA and they are getting indentations in their scalp and even foreheads which don't seem to be going away...  I am therefore thinking that if I am offered them I might well say no.
 
Many thanks
 
Seni xxx
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te.rayz View Drop Down
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Joined: 24/October/2012
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Post Options Post Options   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 19/March/2013 at 1:58pm
Hi Seni
 
No, I didn't have steroid injections, only took hydroxychloroquine sulphate tablets.
 
Each visit with my consultant involved me asking a list of questions! however I didn't ask for a detailed answer as to exactly why I was not given injections.
 
Thinking over my lengthy discussions with her, perhaps it was simply a case of, try tablets first and see if there's any improvement before adding further medications into my treatment programme.  Maybe if you start multiple treatments at the outset, how do you know which one is actually working?  You could end up taking tablets for no reason or indeed having injections for no reason.
I think the tablets needed a minimum of 2 months before any results could be seen.
 
Thanks for details of your other forum   Thumbs Up  I've had a quick look and it seems a favourable alternative.
Hope you have some measure of success whilst taking tablets.
love  te.rayz 


Edited by te.rayz - 19/March/2013 at 9:07pm
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te.rayz View Drop Down
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Joined: 24/October/2012
Location: Leeds
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Post Options Post Options   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 19/March/2013 at 6:29pm
Hi Autumn
 
Sorry I haven't replied sooner.  I hope you're doing well with the hydroxychloroquine tablets!!
 
Re closure of this forum: take a look at Topic >> Announcements (Alopecia Areata, Universalis and Totalis) >> Forum Modifications - this will give you details why this is happening.
Alternatively see notice on http://alopeciauk.healthunlocked.com
 
I'm pleased to read you have joined the other group which Seni also recommended to me.  I've briefly looked at it and it appears to be a favourable alternative and one which I'll consider joining since I dearly wish to keep in touch with you and the others on this thread.
 
I would much rather stay on AUK because I love everything about this forum but unless there is a major change of heart by the moderators then I will reluctantly have to pack my bags  Unhappy
 
Kind regards
te.rayz
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clovie View Drop Down
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Joined: 10/December/2009
Location: United Kingdom
Points: 69
Post Options Post Options   Quote clovie Quote  Post ReplyReply Direct Link To This Post Posted: 20/March/2013 at 4:17pm
hello again , thought i would say took your advice and and phoned the dermatoligy  department a few times and have  now got appointment brought forward. to the 29th March.
Have been taking  the Hydrocloroquine  tabs again but i am still getting the loss and the itch .
Just hope it would stop falling 
Have been and tried on Hair Topper to cover  all the numerous bald areas so it seem that be maybe the way i will go .
If anyone knows of anywhere in Scotland that does good hair systems  i would appreciate any info.

GrannyCry
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Seni View Drop Down
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Joined: 08/September/2012
Location: Surrey
Points: 272
Post Options Post Options   Quote Seni Quote  Post ReplyReply Direct Link To This Post Posted: 21/March/2013 at 9:43am
Hi all
 
Te.Rayz, thanks for confirming your treatment plan.  I am not keen on using the steroid injections as other women have reported it leaving them with indentations on their scalp and I could end up with my scalp visually looking worse than the hairloss.  If my derm mentions it again I am going to decline.  I will use just the hydroxy and see how that goes. 
 
I have joined the new forum, not many people have moved over yet but hopefully everyone will decamp there and the AUK group will continue.  I use the alopecia world forum but I also use this forum just as often and because everyone on here (more of less) is in the UK we are pretty much able to share very similar treatment options and have the same experience within the NHS.
 
Clovie, I used the Nizoral shampoo for a few months, I don't really get itching etc.. but I tried it as I know a few ladies that have experienced irriation with this condition has found it to be a nice shampoo and it calmed their scalp down - it does not stop hair loss of course - I have also been using a shampoo - Faith In Nature, Seaweed - that a few folk in this site recommended.  It is lovely and gentle, no fragrence/colours etc.. I got it for just £6.00 of the internet.
 
I don't know any hair systems in Scotland but I would ask your GP or derm for an NHS prescription then you can get £240.00 per year towards the cost of your supplemental hair.
 
Thanks very much to you all for your advice, having support for each other really makes it much more bearable having this condition. 
 
Have a lovely day.
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clovie View Drop Down
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Joined: 10/December/2009
Location: United Kingdom
Points: 69
Post Options Post Options   Quote clovie Quote  Post ReplyReply Direct Link To This Post Posted: 21/March/2013 at 3:36pm
Hello Seni, thanks for the reply  I have bought Nizoral shampoo it is £9  in boots  and think it helps for a couple of days after using it.
I have a N.H.S prescription so don,t have to pay towards this Hair Topper that i am getting
just hope i like it and can get used to it  .
We all know its not life threatining  this LLP but its so distressing   loosing hair everyday  its all i think about  now .
I have registered with the new site so hope we all can keep up .its helpful to know what treatments we are getting.
Cry granny
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