This flare won’t go :-(

[123MrsG]

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

[LupusKaren]

Dear Mrs G, you have been through a horrible time. Would you be able to get in contact with your Rheumatologist yourself, usually via the Secretary and ask for a quick phone update before your appt? Some consultants are willing to accommodate this way, failing that get your GP to write to him? Hydroxy can take some time to come up to full effect. I would having said all the above, with your new symptoms, get yourself checked by your GP to be safe. Good luck.

[miccika1]

I had the same issue w Iron. Never felt worse in my life after being on a high dose of iron but did start feeling better after I stopped. What works for me when i ahve a flare is takin 20mgnof prednisone for three days then 15 for three days then 10, 5, 0. Everyone is different so that might not work for you. Maybe you also need more medication such as an immunosupresant ?

I would start w prednisone round see if that resets things for you and then consult rheumatologist

[123MrsG]

Thank you very much for your replies. I do appreciate it. I have spoken to my rheumatology team and I am going to have a steroid injection tomorrow. Fingers crossed I start to feel better soon.