Changing symptoms

[BleuJan]

Hi all,

I've been part of this forum for a while, but this is my first time posting.

I'm 28 and was diagnosed in 2011, so have lived with lupus for the best part of my adult life. Usually it affects my feet (pain across the top of my foot) and wrists and I have pain when swallowing. Ive been fortunate in that a flare will usually settle down with a day or two of rest.

I'm on 200mg of hydroxychloroquine and 100mg of azathioprine (though these have been stopped for a couple of days due to low WBC count). Taking 5mg of prednisolone daily at the moment due to flare up.

This year my lupus seems to have decided that it's bored of the usual and is switching things up.

I was hospitalised for nearly 3 weeks in April after a severe reaction to insect bites (my rheumy thinks this may have been my first skin flare and nothing to do with insects), that left me in bandages for 5 months and lots of scarring on my legs. I've been referred to a consultant in London because of this as no-one is really sure what happened.

Now I'm in week 2 of flare (unusual for me) that has caused what felt like pleurisy in my lungs, pain and stiffness in my knees and hands, back pain, shoulder pain and pain when swallowing. Some of these symptoms have come and gone and some have stayed throughout.

Last night I developed an itchy rash on my feet and to be honest I'm scared that i'm going to break out in blisters and ulcers again and lose another half a year to recovering.

My question is, does anyone else have experience of their lupus changing/developing over time? I feel like I don't know mine anymore and can't predict how I'll be feeling from one day to the next.

[Hidden]

Hi am so sorry that lupus is causing you to be so unwell and as it’s so unpredictable it’s pretty bad as you just don’t know what symptoms are going to pop up. I was diagnosed last month with lupus. Am experiencing a whole range of symptoms and have developed all sorts of weird reactions to food medication etc. I find there’s now new symptoms ones I never had before not sure if it’s the medication or just the lupus. Keep a diary of all yoir symptoms and I hope you have a good dr and rheumatologist and it’s well worth researching lupus yourself to get more onsite into how it effects you. This site is such a help as there’s always someone that’s going through similar and can advise you. I have found the good days are great but the bad days are unbearable. You need good friends and family who can be supportive. Try and keep yoir stress levels low and get plenty of rest as it seems to help me. Take care. Elena