Hey all,
So not had the best of weeks. On Monday night I was really hot like boiling whilst trying to sleep. I had the same on Tuesday and also noticed some lesions on my elbow. I went to gp. She told me it was students elbow and because my temp was 38.8 she gave me some antibiotics. So Tuesday I took 2 antibiotics in the day.
I noticed my left eye started swelling and my lesions got worse and were spreading.
I saw my rheumy nurse on Wednesday anyway and she was very worried and told me I had to be seen by someone that day. So my gp gave me a phone call about 4pm. She asked me to come in at 7pm.
She took my temp and it was 39.8 and she said it clearly wasn’t students elbow. So she told me I had to go to the hospital as my heart rate was very fast as well. So off I went in an ambulance she was worried about sepsis.
When the ambulance arrived my heart rate was 111 inside it. Had a 3 hour wait in a & e. Didn’t get seen till midnight. So now we’re into Thursday. I saw the doc and he took some bloods had a look at the lesions all over my back , elbows and leg.
My temp and heart rate had started going down before I was seen. The doc in a&e said if my bloods were all fine I could go home well that was at half 1ish. He came back at half 2 saying it would be another 30mins to and hour. I didn’t get discharged until half 5! So I slept most of Thursday and the week. I still can’t quite believe I lost a whole day.
So from what I can gather I had an infection which caused the lesions on my elbows and the antibiotics I took I had a reaction to which caused the eye swelling and for the lesions to spread fast. I hadn’t eaten from Wednesday until yesterday. After eating it made feel very sick and today I’ve had a bit of food but am taking it slowly. I am drinking better now than I was in the week. I’ve lost about 7lb.
My lesions have all started going down in the last few days. The ones on my back are hardly visible just ones on my elbows still. My eye swelling has gone right down. Just a little bit red and dry now. I’m pleased my eye is looking normal now it did look nasty.
I also had to get my bloods repeated on Sunday after a&e doing them on Thursday. They were all fine Sunday. I’ve got to go again tomorrow to get bloods repeated again and then I’ll be finish.
Also my rheumy nurse fitted me in the consultant for last Friday after all this had happened as she was worried. My consultant didn’t care about it she just said she didn’t know what it was.
We then spoke about my meds as I’m on nothing again because the leflunomide stopped working. She told she didn’t know what to give me and to come back in 3 months. I rang the rheumy nurse and she was very unhappy with the consultant so she is getting me an appointment with a different consultant at the hospital. I’m back at Guys in June. So maybe they might have something more to say if I’m still not meds by then unlike last time.
Just thought I’d give you all an update. I’ve had a rather interesting week and a bit. I’ve had 3 gp appointments, nurse, rheumy nurse and consultant. All in a week. Oh and a visit to ambulatory care which I’m back at tomorrow 🙂
I will probably return to work next Tuesday or Wednesday now. I’ve got a gp next Tuesday the 7th. I think she just wants to check to make sure everything has gone down. I’m hoping she can fill in what actually happened because at the moment I’ve had to come to my own conclusion as no one has told me anything!
Fat I’ll waiting for a diagnosis 
I’m posting a lot I know but I feel so hopeless
How to baffle a rheumatologist: 
Update after frustrating appointment a month ago. 
Go home and have a baby !
