Lichen Planus VLP

[donna]

Hi l have vulva and vaginal Lichen planus added to my SLE and many autoimmune stuff. Have seen a vulval dermatologist and also had a laparoscopy 2 weeks ago with the uro neuro gynae,,have dermovate for vulva nothing for vagina..( sorry to be so up front) . Does any one else here suffer with this ? They think I also have in my throat an ear! Waiting for another ENT referral.( never a dull moment!) my toe nails have dropped off ...and my head is itchy and picking bits off! Doesn't help with the ever decreasing hair!

There doesn't seem to be a Lichen planus forum here on health unlocked?

Having a bad SLE flare at the moment..bad head aches ( also have APS/ Hughes , (can't tolerate the aspirin) )would my Rheumy want to know about my new auto stuff ...? Could he help with this and flare? GP is at a loss and dithering..gave me prednisalone ( have had lots before) but asked me to rest for another few days to see if things improve ,before we will decide wether to go on a course..I saw him yesterday as I had a lump come up on my annus ..outside ..says its a thrombotic haemaroid..now have lidocaine/ hydrocortisone..defiantly some thing going on,,

Had the LP going on for a year...

All the lids of many boxes ( different auto stuff) are all flung open together this time ( can usually cope with a couple) but seem quite overwhelmed at the moment and various different pains! And the down side is l react to all the pain meds ..so not taking any ..feel sure this flare is due to the anaesthetic and morphine ( that I asked not to be given) I had with my laparoscopy..!

Any advice? X

[Shell567]

Poor you, Donna. SLE by itself is enough to deal with!

There is a free Patient.co.uk LP forum that seems to be very active at the moment. patient.co.uk/forums/discus...

There is also a UK Lichen Planus (UKLP) forum, but you have to pay £5 to register. uklp.org.uk/

The UKLP does provide a free patient information leaflet that you can download. It discusses most aspects of LP, including genital LP. There are a few other free downloads too. uklp.org.uk/downloads

DermNet NZ lists a number of treatments for LP including hydroxychloroquine (also a treatment for SLE), and tacrolimus & pimecrolimus cream for oral or genital LP. dermnetnz.org/scaly/lichen-...

It sounds as if you may need to be seen by a dermatologist with good knowledge of LP. I have Sweet's syndrome not LP, but I hope that someone with LP will be able to offer you further advice.

Take care,

Shell.

[donna in reply to Shell567]

Hello shell

Thank you for responding to my post ,and with all the information you have given me ,there is plenty to check out and read! I wasn't aware of the patient .uk forum nor the Derm net ..so I will pay a visit !

I'm sorry that you have Sweets a Syndrome another nasty thing to have ,I hope you have good quality of care and are able to manage your symptoms ..

With best wishes

[Shell567 in reply to donna]

Thanks Donna! Fortunately my Sweet's syndrome has settled down over the years. It's much less problematic than it used to be. All the best. x

[lovesradio]

Donna good luck with getting support as described by Shell567, you need and deserve some proper support and help

[donna in reply to lovesradio]

Hi Lovesradio,

Thank you for leaving your kind comment ..I will check out shells suggested websites and have a good read..need a good knowledge of what's going on!

Best wishes .