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Discussion Starter #1
My hair as gone a mess, nothing i try does anything looks dead anything you ahve tried and worked????

My hands are bad ends of fingers the skin so dry and spliting nothing im trying is soothing them,or working any idea's???

thanks Lin xxxxxxxxx
 

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Hi Lin

I know you also from the hughes syndrome foundation but I do lurk here as well!

Sorry to hear you're feeling still unwell - I know that the tunnel can feel very long sometimes (am in a bit of a tunnel myself at the moment as well!) but keep your chin up and the light WILL show . . .SOON we pray . .. .

As for the hair and skin - only my own suggestions but here goes:

hair - I lost a lot of mine with lupus flare ups but i started looking after it really carefully. I found bodyshop olive shampoo and conditioner worked for me - no guarantees anyone else tho'! - and i only get it wet every 7-10 days as it's so dry and this seemed to help it a lot. Now, after 4 years, it's gettting much thicker again and is starting to look more like it's ol' self tho' it is more curly and darker than before

skin - dry skin is a side effet of steroids and so a fellow steroid user myself - (about 30 IV methylpred infusions and daily oral steroids between 10-60mg for nearly 5 years . .) I LOVE body butter (also from Body shop and no! I'm not on commission with them!) it's so thick and creamy and really helps the dryness. And it comes in all lovely different flavous. I keep a tub by me constantly and put it on my hands etc as many times in the day as I can think to do it!


I hope this helps! I do hope the MMF kicks in soon and helps you feel better - in time for Spring!

love Cathy x
 

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Discussion Starter #3
Hi yes i know you cathy ,and thanks for your recommendation, will try at anything, i have got the body butter sanctuary, and hand cream, and aplying it loads, next time im out will have to pop into body shop.



thanks for that Lin xxx (take care cathy x)
 

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The Body Shop Satsuma Body Butter is lovely and lasts ages. When my hair was really bad I used Body Shop shampoo too. It was very good and again it lasts well.

x Lola
 

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I live in the US. Do they have a website or can I get it here? I am in a flare up now and have been for about 5 months. My hair is coming out by the handfuls.
 

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(((((((((Lin))))))))))))

Shelia if you do a google search on "The Body Shop" they have a store locater on their site.

love
Lily
 

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I change shampoos every month practically...........not committed to anything.

However the Bodyshop Hemp hand cream is excellent. Thick as a barrier cream and lasts well. Also was recommended by a chiropadist for cracked heels.


God bless you Anita (late body shop inventer.)
 

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maybe helpful

Hiya, my daughter works in a hairdressers and tells me that people with hair loss often buy Nioxin Cleanser (shampoo) and Scalp Therapy (Conditioner) which they say helps.... just for your information xx:lol:

XClaire
 

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Discussion Starter #9
tried Hemp, big sis didnt work for me but thanks xxx
as soon as i get to the weekend hubby can take me shops


Lin xxx
 

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Hi Lin

how are you? hope you're feeling better :hug:

I have been using an expensive shampoo & conditoner from redken that I love, however I recently tried the body shops olive oil shampoo & conditioner that cathy mentioned and its lovely! I am so impressed with it, my hair feels fab and it's improved my dry scalp too. much cheaper too :wink2:

sorry I can't help regarding creams, I can only use 50/50, but I've heard lot's of good things about all the body butter range..
I do think that when were not feeling too good it plays havoc with our hair & skin :sad:

so you go and have a good spend lin :wink2: and I hope it all helps :)
take care, karen xx
 

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thanks karen, i am going go ar the weekend, and yes i think your right think when flaring it puts everything out, and starting new drugs and stopping other ones doesnt help maybe.grrrrr!!!

At least my hair dresser is here monday midday, so hooeing that puts a boost in it too:).......but think i will go for what cathy said........

thanks again for all your help Lin xxxxxxxx
 

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Discussion Starter #12
just to lwet you know my friwend got me the body shampoo and condisioner still funny hair as yet, seem to be able to manage it more id i leave it a coulpe of days gone like fizzy baby hair weird, i know its the cell cept as this happend for a while woith the Az drug too, but thanlks for the help


Lin x
 

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Discussion Starter #14
well hair still a mess, i give up for now, i think its the meds grrrrrrrrrr
 

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Lin,

I can hear your frustration and yes, the meds and the disease do mess with your hair. BUT give the products a fair go. It just not go away that fast - just keep going with it. I think it took about 3 years of my hair being very thin, curly (from thick straight hair) to about 1 year of getting it back (well, more or less, it's still not EXACTLY the same as before). I think the products help a lot but it does take a bit of time. I wish there was a quick fix for you tho', there's nothing more depressing than feeling as if your hairs falling to pieces too. I remember trying all sorts of things when mine started falling out and went all 'frizzy' - I had it permed, then straightened, and all other manner of things inbetween.

I still have 'issues' with my hair but really, I do actually think so many Thank you's everyday I do wake up with hair - it was just soooo awful to lose it.

I hope your hair soon starts behaving itself. And in the meantime, I don't know if it's helpful, but it's what I tried to do - focus on another bit - like doing your nails beautifully, or wearing some gorgeous ear rings etc.

Take care,

love Cathy x
 

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lin,
There is something in the states called body cream that helps with the dry skin and the finger tips. You can find it here in just about any beauty shop. You can try it on the scalp not sure if it will help. There are some special shampoos in the states for very dry scalps. You may have to see a dermy and get a prescription for a shampoo. I hope you feel better soon and solve you skin problem.
 

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Tammy Lin is in the UK so that's probably not going to help a lot :wink2:

I agree Lin it's probably the Cellcept, but as Cathy mentioned with most of these things it will probably take a fair while to correct it, it won't happen overnight. I do hope you can find something that will help though.

My skin is incredibly dry always :rolleyes: and I don't use soap on it to wash just something called QV Wash which I believe is available in the UK. I also use a special cream my doc got me onto called Calmurid to put on after a shower. It's really good for dry skin. Both are available from the Pharmacy and I came across a site that says you would be able to get the Calmurid on prescription in the UK (wish I could :lol:) I only use it on my body, not face. When my hands and feet are really dry and cracked I do the above routine but also use wool fat (anhydrous lanolin) at bedtime - it's that icky stuff breastfeeding women use on cracked nipples so that will give you an idea of how effective it is :lol: It's messy so I wear cotton gloves and socks over it. After that routine I'm exhausted :rotfl:and generally fall into bed :wink2:
Probably good I don't share my bed with anyone too :rotfl::rotfl:

Good luck,

love
Lily
 

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Hiya, our local hairdressers sell it, my daughter works there so I will find out where they get it from etc, should be able to answer you tomorrow!!
Claire X
 

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Apparently you can get Nioxin via the internet or shops that supply the hairdressing trade. Some of these are now on the high street, otherwise I suggest you google it to find a supplier that can send you some. Hope it helps, I have heard good things but not tried it myself as not had a prob.
Take care,
Claire X
 
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