Definite diagnosis of SLE.

[soootired]

I saw my rheumy today and have at last got a definite diagnosis. It IS lupus but he told me it is mild in my case. I take 400mg hydroxy and have done so since November last year and it has really helped enormously but I keep getting pleurisy and episcleritis which my gp has treated with a 5 day course of 30 mg steroids which worked. But i told him it is always "grumbling" still. He told me he was loath to put me on long term steroids (which I'm pleased about) and said I had the option of either colchicine or azathioprine to add to the mix to further keep things under control. I queried aza as thought better to keep the "big guns" for later if needed, because I thought it was progressive ie would get worse over time (?) He said pattern of lupus is that it's normally set in 1st 5 years but since I've only had symptoms 2 years we couldn't say with me. (???) So I opted for colchicine rather than aza and hope I made the right choice!

My question I suppose is whether in your experience, things experienced in the 1st 5 years DO remain in the same pattern, or if in fact they do progress over time. And... is it like RA where hard treatment early helps matters, or not. In other words, is taking aza early beneficial, or best left for later if needed.

I do hope this makes sense!

Many thanks. C

[misty14]

Hi Sootired

You must be relieved to get a Lupus diagnosis. Although I don't , instead it's UCTD I don't agree with your GP saying it's set in the first five years as that hasn't been my experience!. However I feel you've made the right decision to try the NSAID first because why take more medication than you need at this stage as your illness is mild. Best to keep the immuno-suppressives in reserve!. I hope you feel better soon. X

[soootired in reply to misty14]

I AM relieved,because to be honest it's been going on for a couple of years where I knew something was wrong with my body, at first i was convinced I had RA and my original rheumy was a complete idiot and went from fibro to sero neg RA back to oa... and I just knew how I was feeling, which was enormously fatigued and generally unwell with "wandering" pain in my feet, shoulders, hands etc. So.... he got fed up with me and sent me for a second opinion to a professor who suspected lupus. He sent me to yet another rheumy at the lupus clinic. Even he, the first time I saw him, was talking in terms of "if you have..." and didn't seem convinced. So when I saw him yesterday, ready for combat, armed with all my research on sero neg lupus and my symptom diary, it was a bit of a shock when he just said "with your type of lupus..." and I didn't need to do any of it! It is an incredible relief. Apparently I have positive anti ds dna and there we are!

As for colchicine, it's not nsaid, it's apparently a treatment used for four that brings down inflammation and he feels it works in pleurisy as well. I hope so because it hurts when it flares up all the time.

I would like others to comment if possible about this 5 year thing and the progression of lupus.

[soootired in reply to soootired]

Just saw productive changed gout to four!

It's a gout treatment.

[misty14 in reply to soootired]

Hi Sootired

I am pleased your diagnosis nightmare is over!. It can be a long, tough road!. It would be interesting to see other comments about Lupus and five years!. I hope you feel better soon from your new treatment. X

[cantstopitch70 in reply to soootired]

I'm pleased to hear you have a positive diagnosis. Yet I'm still tossed from doctor to doctor. I pray the day that I can get a positive diagnosis. My prayers are with you. Be Blessed!