Hi all, I hope you don’t mind me having a little moan and a whinge. I was diagnosed with SLE last year and began taking hydroxy since last November. I have been taking hydroxy for 6 months now. I have definitely experienced some improvements in my health, particularly some gastro symptoms that have now resolved.
About two moths into taking hydroxy I felt a bit better and since learning about having SLE I have also started pacing myself which has also helped a lot. But over Christmas I got swine flu and this set me back a bit. But I recovered really well and began to get my strength back.
In March I started taking some iron supplementation from my consultant for another medical condition that I have. Neither of us knew the iron can cause flares in SLE at the time. So I took the supplements on and off for about a month, but every time I managed to take them I felt very rough. All my symptoms from before diagnosis flared up. After asking my rheumatologist if there is a link between iron and flares I stopped the treatment.
Even though I haven’t taken iron for 6 weeks now I still feel quite rough, especially first thing in the morning. I feel really anxious and frustrated about how unwell I feel. I’ve always got pain, sometimes this is just muscle aches but other times I have very sore joints. I’ve also had a few odd rashes and vasculitis around my feet and ankles. But the worst thing is the fatigue. I just feel like I’m coming down with something all the time. And I’ve also had some dizzy spells as well. The iron definitely triggered everything off but I thought it would have gone away by now.
Before Christmas everything seemed to be going well but now I feel like I’ve been flaring for several weeks. Does anyone have any advice about what I can do? I have an appointment with my rheumatologist coming up soon and I will mention everything to him. Do you think I just need to give the hydroxy more time to work? It feels like it’s not working. But sometimes I wonder if I’ve just forgotten how bad things were before I started it. Ive had a taste of what it’s like to be pain free and I just want to feel well again