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Finally, I've plucked up courage!

735 Views 14 Replies 11 Participants Last post by  JudifJ
Hi everyone,

I've wanted to post on this site for ages now, but my nerves kept failing me! I didn't think anyone would be interested in me, but I now realise what lovely supportive, kind people you are and I could do with one of those 'virtual hugs' too! I've had Lupus now for almost 6 years and apart from suffering really badly initially, I've had a few flares over the years. It is always awful in the sunlight when I get the most terrible red, itchy rash and look like a freak having to cover up, I have to cover myself in suncream even in Winter. I have a bad allergy to nickel as well. This February I am having the biggest flare ever! My mouth was covered in ulcers which was a warning to me what was about to happen! My muscles are currently aching like crazy, even my toes! I could sleep forever, yet can't at night as I'm in so much pain. I couldn't even hold a hairdryer the other morning. My poor hair has suffered over the years too and I have thin patches, some of which have grown back thankfully. My GP has put me back on Prednisolone and I am trying to wean myself off them gradually until my rheumotologist appointment on 26th March. They cause me to have stomach pain. I was on 30 mg daily, but when I got down to 10 mg daily, I couldn't walk down the stairs. I can manage the pain now on 20 mg daily, but I hate taking them. They aren't always too effective for me with the pain, but do stop the rash and hair loss. My GP is very supportive, but not sure he fully understands the disease.

I had recently been redeployed from my job to another totally unsuitable one which involved different hours and driving longer distances, more than coincidence that I had this flare, which I'm certain was triggered by the stress of it all. Had a bit of a job convincing my employers that the job was unsuitable, but finally am getting somewhere and they have offered me another post which is going to be better for me I think. I have had the past 5 weeks off work and have been feeling very sorry for myself. This site has helped me enormously, non-judgemental and people who really understand. Thank you and best wishes to you all.
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Hi Lillypad :)

Welcome to the Forum. I moved your post to start a 'thread' of your own because I didnt want you to get lost in someone else's post.

Im delighted that you took the plunge and joined in. As you already know this is a great community full of warm, intelligent, wonderful people who are only too happy to support each other with this disease. You can take part as little or as often as you like - there are no pressures.

Im really sorry to hear about your current flare and your experience with pred:hugbetter: Can I ask what other medications you are on for disease control? Are you on Plaquenil? If the pred doesnt suit you then it might be necessary for your rheumatologist to add one of the steroid sparing drugs like Imuran for example.

Its good that your appointment is coming up next week and I hope you get a good response. Maybe you should ask your rheumy how you should cope in between appointments if things flare up. Its great that you have a supportive GP and perhaps you can help facilitate some communication between them? Sometimes we just have to push the boat out a bit to get the best possible care :hug:

I hope that your rheumy can help knock this flare on the head very soon. Make sure he knows how long you have been out of work because of it and how it is impacting on your life at the moment.

Lovely to meet you and I look forward to getting to know you. Best of luck next week

Luv n stuff
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