Hi everyone. For the second of this month's blogs Wendy has written about her experiences in getting diagnosed with lupus. Thank you so much Wendy for taking the time to share your story.
I was diagnosed with Discoid lupus in November 2013, but when I look back I think I can safely say that I had been suffering symptoms for about four years before that diagnosis, as is the case with most of us it seems.
I have always been allergic to pet dander and I thought that the skin problems I had from January 2013 onwards were caused by my allergies. I had never heard of lupus at this point. I had recently spent some time at my mum’s house and she had a dog. I thought the anti-histamine that I took regularly had stopped working. I had a rash on my arms and sores on my head. I am also asthmatic, so thought this was all linked.
By March the rashes were worse and I went to the GP. I was told that I had some sort of allergic rash that had got infected and I was prescribed steroids (Prednisolone) and antibiotics (Flucloxacillin). This seemed to be clearing up until we went on holiday to Turkey for a week. I used a high factor sun cream, as I am fair and stayed under umbrellas as much as possible, but the rash got worse again. I was thinking to myself, am I allergic to the sun cream? Have I used any different skin products or washing powders, even though I have always been careful with these things? I just couldn’t work it out. So, on our return I went back to the GP. He gave me another short course of steroids and off I went.
By August I was plagued by skin rashes and other skin problems. Having three children, we spent a lot of time outdoors during the school summer holidays. I began to realise that there may be a link with the sun and just covered up a little more and wore high factor sun cream. I went to the doctors as the rash had gone onto my face and got told that I had Rosacea. Again more creams were prescribed. For a while I accepted this diagnosis, not questioning the doctor.
I was at the end of my tether by the October half term 2013. For the three weeks leading up to this I was suffering from extreme fatigue and thought I was anaemic. I have three young children and have always put them to bed, heard them read their school books and read them bed time stories, but found that I was having to lie down by 6.30pm in the evening and was falling asleep by 7pm. Everything was slipping away from me. I was extremely tearful, including at work and had headaches a lot. I just could not work it out.
I felt like I was falling apart and my life was out of control. I normally have loads of energy for my children and my life, but I was fading fast. I also felt that the GP surgery thought I was a time waster and a hypochondriac. None of it made sense.
One night my husband was watching TV downstairs, (whilst I was asleep upstairs, as usual) and he watched a Brian Cox “Science Britannia” programme which featured GSK and their new miracle drug for lupus. He came upstairs and woke me up, saying I think I know what’s wrong with you, you have lupus. I told him off for waking me up and went back to sleep.
The next day I googled lupus and realised that he may have had a point. Everything fitted together. Such a mixed bag of symptoms but they might be related after all. On the third day of trying to get an appointment with my GP I accepted a 5 minute emergency one out of desperation. I took out my A4 list of notes (which I made so that I didn’t forget anything), only to have the GP tell me sternly, you have a 5 minute appointment, I don’t have the time to deal with all of that, I have 30 patients in the waiting room to be seen, you must make a proper appointment. At this point I just broke down. To be fair, she listened then and spent 20 minutes with me, before agreeing that yes I probably did have lupus. By this time I also had the butterfly (malar) rash across my face. You couldn’t miss it. She referred me to the GP who was a skin specialist and things moved quickly from there, thank goodness.
I consider myself lucky that the tests supported our theory of lupus, as I have read other people’s stories where they have lupus symptoms but the bloods don’t come back positive and this leads to a long and difficult diagnosis.
I have private healthcare and I saw a Consultant Rheumatologist in November and he confirmed what we really already knew, Discoid lupus, and gave me a prescription for Hydroxychloroquine, to be taken twice a day. I then saw a Consultant Dermatologist in December and he gave me a prescription for the steroid cream, called Dermovate. I have been told that my type of lupus does scar. So where I lost my hair, in three places so far, it will not grow back, as the hair follicle has been damaged beyond repair. Also my face, the purplish scarring and the scarring to my back and arms is permanent. I was lucky to see these consultants so quickly, as I was losing my hair fast and that really scared me. Now that I know it is permanent as well, I still worry that I could end up with further hair loss. I can hide it so far, as lucky for me I have thick hair and a lot of it. My three bald patches are fairly small.
I think that initially the diagnosis was a relief. It made sense of my numerous strange symptoms. It was also reassuring that I was not going mad! I wasn’t a hypochondriac after all. I really did have something wrong with me - I wasn’t imagining it. Even the staff at the doctor’s surgery are treating me differently.
Day to day, my husband and I are learning not to take so much on. If we arrange things for a weekend, we know that we have to keep one day free for us to rest at home. If I am having a good day, we might go for a walk, even if I need to nap when we get back. I have reduced my working days from four to three and hope that this will be better. It should help the work/life balance, with my young children and my lupus. I am not ready to give in to the lupus and quit a job that I love. My husband has to do more around the house; he picks up the pieces when I am too tired to finish the day’s jobs. I have accepted that if I need to nap, I need to nap and that isn’t selfish of me. I have also quickly found that stress is not good for me and I have to let things go, rather than worry myself and make myself ill over things that don’t really matter.
I am only on my third month of medication and therefore my journey really has only just started. I think I have accepted that I will have good days and bad days. I know that flare ups will occur even with the medication. My skin conditions seemed to get better very quickly, although they haven’t disappeared completely. It’s mainly the extreme fatigue, depression, headaches and brain fog / memory issues that are lingering. My GP (the skin specialist, who I have built a good relationship with now and I trust her) tells me to be patient. The medication can take 3-6 months to work fully. So fingers crossed. I am a little anxious about what the spring/summer months will bring, regarding the photosensitivity, but at least now I know what the problem is and how to protect myself – Factor 50 and a floppy sun hat at the ready.
I have done a lot of reading on lupus, as that’s the way I am. I have bought 6 books and counting. I have also joined LUPUS UK and the HealthUnlocked lupus site. I like to know what I am dealing with. I realise that everyone’s experience of lupus is different. I have been very open with friends, family and work colleagues about my lupus. I do find it exhausting having to explain the condition to people over and over again, but I guess it is the only way to raise awareness. I don’t want people’s sympathy; I just want a little understanding
I have started to keep a brief diary of my symptoms, medication, blood tests and visits to the doctors as it is such a lot to remember. It also includes notes of how I feel on any particular day. It helps me think through what I am experiencing and, I guess, is a kind of therapy in itself.
I am lucky that I do have a great husband, family and friends that have helped me through and I know that they will be there for me whenever I need them. So my journey continues.
We'll be continuing to share people's lupus stories for March and April. We'd now like to for people to share their story about studying at school/college/university and the challenges this created. If you'd like to share your story, please email it to paul@lupusuk.org.uk
One or two stories will be chosen for each month. Please send a photo of yourself along with your story.
ANA negative but tested positive for LA and smooth muscle antibodies 
Help!! Am I losing my mind?
subacute cutaneous lupus
Not yet diagnosed, seeking advice
Waiting for New Referral (New rash)
