? Is there a group in West London

[Mozart52]

Hi all,

Is there is group in or near Ealing, West London. I was diagnosed with Lupus Cutaneous in 2021. My skin blisters within minutes with accute itching and burning, drives me mad, nothing eases it . Plus body aching horribly I take 400mg Hydroxychloroquine daily and Mepacrine 3 days a week.

I have also had Crohn's disease for many years and many surgeries. It was thought that biologic drug Humira. caused it, but unfortunately after stopping it, the Cutaneous remained. I'm very lucky to be treated at Guy's as their care is excellent. .

[OmMus]

Hi Mozart52 I don't think there is unfortunately.....i am also in the Ealing area and from what I've seen the closest would be north london group

[Mozart52 in reply to OmMus]

Hi OmMus,

I've emailed a lady called Debbie, the web page monitor to ask about a group and if not if she knows how many people on this website live in West London. I don't know how we able to contact each other maybe Debbie will know.

[OmMus in reply to Mozart52]

Yeah that's a good idea, let me know if and what she says when she replies

[StriatedCaracara]

Some groups meet remotely, if it is possible for you to attend online.

I phoned Lupus UK and they advised on best group to try.

[Haired]

Hi,

sorry just picked up your request re mepacrine. My problems with Lupus started after taking a PPI FOR STOMACH PROBLEMS back in 2016 a bit like you. Skin was in a terrible state. My dermatologist and Rheumatologist worded together and after many attempts we got combination which started to help. I take 5 mg Steroid ( long term use) Mepacrine 50mg daily,Folic Acid 5 mg daily, vitamin D Factor 50 sun protection Heliocare, Heliocare ultra D Imunoprotection tablets to help with photosensitivity ( prescribed by Dermatologist) have to buy on line. I have 6 Monthly Infusion of Rituximab ( day admission). I had tried all the usual Lupus medications with no success over a few years it took some time to get right combination.

Imuran was a disaster for me and Mepacrine. If I go below 5 mg of steroids my skin starts to breakout again and feels so hot and burning. I have Dermovate Ointment for the rash which really helps. Even on a dull day I have to cover up or burn through my clothes. I have purchased some golf tops as they have some UVA protection and always a hat as my head burns/rash. I do have lot of stomach problems and just saw DIATICIAN on Monday. Possible part link with 3 surgeries I have had.

I live in Ireland and attend consultants through Private Insurance in Hermitage Hospital. Rheumatologist arranged Rituximab Infusions which has been a game changer. Started first Infusion in 2021. Sorry for long reply Note I also take Blood Pressure medication and rheumatologist also prescribed amitriptyline5mg ( which I take at night) this helped the burning like pain I sometimes feel inside arms and legs consultant referred to this burning as pain. Feels like burning internally not exactly on skin.

I have never met up with anyone in my area with Lupus which I think would be so helpful. It feels like a very solitary problem / Problems. I am lucky I have a very good GP, Dermatologist, rheumatologist, and bowel surgeon. But unfortunately accumulation of issues changes a persons whole life and confidence. Best of luck with your medication cocktail.

Have a good day. Marian