hair and hands

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

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

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 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