Skin problems

[Lynnedsw]

Hi,

I have never posted to the group before but have found it helpful in the past.

I have various Lupus symptoms, but currently the one which is causing me the most anxiety is a problem with my scalp.

Part of it around the nap of my neck has developed some kind of flaking with small ulcerated areas which has now started to 'leak' watery blood. I have added a picture, sorry it's not very pleasant.

I have been to my GP who has referred me to the dermatologist however this appointment is not for another 3 weeks and it is really starting to cause me some not insignificant distress.

This is coming on top of being turned down for my PIP, didn't get a single point, fatigue which is starting to get the better of me, sleeping 7 - 8 hours at night, up really early and asleep again for around 3 - 4 hours by mid morning.

This is beginning to sound like a bit of a whinge and I am usually pretty stoic about things but I'm finding things are getting to me and I know that this group is pretty supportive of each other if anyone has experienced the skin symptoms it would be helpful if you have any advice.

[Wendy39]

Hello. So sorry you are unwell. I have had sores on my head and lost some hair before. I know how painful you must be finding this. And worrying makes it all worse. What medication are you on? And have you seen the dermatologist before about your lupus? I was diagnosed 11 months ago now and am still waiting to see an NHS dermatologist. Waiting list here is about 12 months. Luckily I saw a private one fairly quickly and he gave me a really strong steroid cream That as soon as I feel a sore or notice any hair loss I apply - it really does the trick for me. I am no expert but It seems that your lupus is flaring and you need some medication or steroids to get it under control. Maybe you could telephone the dermatologist secretary and explain how urgent it is and ask her to telephone you if they have any cancellations come up. I am sorry this isn't very helpful. Just read your post and I can relate to sores on your head and wanted to reply. I wish you luck.

[Paul_Howard Partner LUPUS UK]

Hi Lynnedsw,

It may be worth calling the dermatologist's secretary regularly to see if there are any cancellations so that you can get an earlier appointment - this does sometimes work.

Have you been diagnosed with lupus? Has your GP prescribed anything for the time being?

It may be worth appealing your PIP decision as quite a lot of people are successful in getting the decision overturned. If you need assistance with this then I recommend that you go to your local Citizen's Advice Bureau.

We have a booklet about skin involvement in lupus which you might find helpful - lupusuk.org.uk/images/pdf/s...

[Lynnedsw in reply to Paul_Howard]

Thank you both for your responses. I was diagnosed in October 2011 and I have my next consultant appointment at the hospital in December. I have been receiving steroid injections for the past 18 months at 3 monthly intervals. My medication will be reviewed in December as they really don't think that I should have any more and to be honest I think that their effectiveness now is limited. Apart from that the only medication I take is hydroxychloroquine.

Some good news on the dermatologist is that I have managed to get my appointment bought forward to the 3rd November.

I have made an appointment with Citizens Advice who have already advised me to appeal and I will set that ball in motion today.

Thanks for your help, the booklet was particularly useful Paul.

Will keep you updated and thanks for the advice / support.

Lynne