LUPUS UK
21,703 members17,198 posts

Finally some GOOD NEWS!

Saw the rheumy yesterday and for the first time is four years got some good news! C3 & C4 are trending up - despite the sun and heat - my liver is back to normal, my ANA is down and my leukopenia has resolved. My rash has almost disappeared and my IBD has improved. My hubby and I just stared at the results and then we all laughed in happiness. They may be small things, but some progress is better than none!

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Excellent news, katidid, well done. What's the secret of your success? x

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Honestly, a committed experienced doctor who refused to give up! Personally, I think the Hydroxychloroquine is helping the blood and organs and the very low dose Medrol is helping the skin. I also take a drug called Orencia, however it's a trial. I credit that with helping my belly, although it was meant to help my joints (which still hurt like the dickens). Also, it did help in getting me out of an acute fatigue flare. I'm up and about most of the day now (vs. being in bed or nearly collapsing when I went out). I still "retire" around 6pm, but I'm able to do a little more each day.

Also, I became absolutely religious about controlling my UV and heat exposure, including not overdoing anything that would cause my body stress (mentally or physically). This has really helped.

I pray every day that the pain will get better and after these positive signs, I'm more optimistic it will.

Taking some of this positive energy and sending it out to you all!

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Oops! Forgot to add that the seizures are officially under control! I have CNS Lupus and it's been an on/off struggle to deal with this. But, it's getting better. Still have bad "fog" and my memory is crap, but I feel safer now so that's a blessing :)

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