Should I bother the GP?

6 comments

Purpletop

27 Jan 2013

Have you been started on a steroid sparing medication, or are you taking only steroids? Because if you're having difficulty getting off them, you need an alternative to take the edge off the withdrawal symptoms and calm disease activity. I wd definitely go to the rheumatologist, rather than the GP.

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Helly72

27 Jan 2013

Hi purpletop, thanks for your reply. I am on leflunomide as my steroid sparing drug. I have tried most other medications but they either make me more unwell or simply don't work. I have an appointment at St Thomas' lupus clinic in mid Feb so I will probably struggle on until then.
Stay well.

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Sher78 Volunteer

27 Jan 2013

Go back 2 the Doc honey, u can't go on like this until u c u're Rheumy. Even if she can only give u some stronger pain relief, at least that would b something that could maybe help until u're Rheumy appointment.

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Helly72

27 Jan 2013

Thanks Sher. You are probably right, nice to chat to those who understand.

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loopy_loves_flo

28 Jan 2013

Heya Helly72, Aw I'm sorry to hear you're feeling unwell, I also think u should see someone preferably a specialist that knows about lupus. I was made to see a specialist for years that didn't know much about lupus just arthritis, and I getting worse n worse, ended up goin up to 40mgs at the worst and couldn't get down further than 20 mgs, are u taking other meds? I asked to go to St Thomas's and they've given me mepacrine, also taking microphenelate and,hydrocloxequine, and after a year and a half I am now stable on 7.5 mgs, I had such a bad puffy face and put on 4 stone, it's amazing how quick my weight dropped. Think positive, u will feel amazing after, hope things work for u. Are u seeing someone at st thomas's? If not request to go there, my doc and other specialist were useless and unless u make a fuss they don't do anything. Since going there and seeing the top people, I am on the mend, haven't had a flare since going there, try to find out about mepacrine, take care

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Helly72

28 Jan 2013

Hi loopy loves flo! Thanks for your reply. How wonderful that you are stable and on the mend. I was there before xmas but just did way too much and ended up in bed and knackered. I did see the GP first thing this morning and she is vv understanding, she has a few lupus patients. I was in a bit of a bad way as I was awake with night sweats, horrid. Do you get them? Like a fever, you are boiling hot then freezing cold and soaked. I do go to St Thomas' lupus clinic, we are so lucky as it is one of the best in the world. I have an appointment on Tuesday 12th Feb so I will fiddle with my steroids until then. May have to go up to 25mgs a day again. Like you I get a puffy face, I know it is vain but I loathe looking like a chipmunk with acorns in its cheeks. You would think that would be the least of my worries, doh. They don't think I am a candidate for mepacrine but I will ask again.
Thanks and take care of yourself too. x

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