Totally miserable over the holidays

Dear all

Apologise for the post in advance but I'm feeling so miserable and fed up at the moment.

Was diagnosed 10 months ago and am now being seen by rheumy at st Thomas. Currently on hydroxy with methyl pred injections every 6-7 weeks.

When saw the rheumy in nov things were going great. I'd changed jobs, more hours but loads less stress, symptoms seemed to be under control with the meds. My injection was due in nov.

I made the stupid decision to see if I could wait a bit longer this time for my injection. This has been an epic fail.

In December I started getting itchy rash on my face but it was being kept at bay from being my full blown butterfly rash. Totally manageable and I kept the itchiness around my lips at bay with soft lip balm.

Mid December I woke up one night scratching at my lips. Cut a long story short it became infected and I had impetigo all over my mouth. It got so bad I ended up in A and E on Boxing Day begging for them to help me. I couldn't eat or talk because it was so sore and scabby.

Hospital gave me antibiotics and I'm sure most of you will know that it went downhill from there.

My mouth is slowly clearing but I have a full blown red scaly itchy butterfly rash. Fatigue is back as is pain in hands and feet.

I have had a totally miserable Xmas and new year as unable to do anything.

I guess my question is, when you are in a flare what do u guys do about it? I've had plenty rest etc but do you know of anything that can be done about the rash once it's actually appeared again?

Sorry for the moan but it was so hard to know all my friends were out having fun last night and I was confined to my bed.

For the first time ever I am anxious about what this year holds for me :-(

Any words of wisdom greatly appreciated xx

6 Replies

  • Hi loopylooby, sounds really awful for you. Did a+e not put you on prednisolone. I have enough to start a reducing high dose for these emergencies, but then again I have had lupus for many years. Perhaps GP could prescribe for future. I am worried that my advice is wrong, as I will be starting these injections this month. Obviously I would not want to encourage an 'overdose'. So double check first. I really cannot help further, as that's how I manage my flares. Ten months is not long enough to know what meds will work for you. It can take time to get under some sort of control. Don't be too negative about the future as hopefully St Thomas's will sort you out. Best of luck to you, hope your suffering is soon gone.

  • Hi Loopylooby

    I guess you've just learn't the hard way not to delay your injection! . Having an infection can make you flare so can you have the injection soon?. Usually for one treatment is to up your steroid dose for a bit to help your body deal with it. Something to ask at St Thomas's, you couldn't be at a better hospital. I hope you feel better soon, your doing the right thing with extra rest. It's a tough illness to deal with. Hugs x

  • I use antihistamine , however antibiotics always bring my face out with rash so maybe a caneston cream ?

  • Thanks for the responses guys. I've got rheumy appointment on 7th so if I can't get steroid injection before then then at least I can get one then!

    Defo learned the hard way; have the injection even when feeling well!!

    For some reason my gps are reluctant to give me injection even though I have letter from consultant. Any of you have this issue? Thinking it might be an expense thing!

    Am waiting for gp to call me bk to see if there is something they can give me for my Malay rash. It's driving me crazy! Xx

  • Looplooby, I guess like many others at various times in our illness it's easy to think that we don't need certain treatments because we 'are well' - as opposed to the possibility that we may 'be well' due to the regular treatments.

    I hope you get back on track soon and are able to pick up where you were before xmas feeling good on the injections.

    Take care

  • Thanks slowmo. Gp has given me steroid cream for the rash and I'm holding on in there til my rheumy appointment. I seem to like learning the hard way!

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