Newly diagnosed

Welcome Greetings and Introductions
1

Hi. I was just diagnoses with lupus. I guess it happened sort of by chance but there’s been signs along the way. I’m 39 married and have three boys, ages 13, 11 and 9.

Where to begin… I’d been having lots of UTIs so after too many was sent to a urologist. He discovered I had kidney stones and ran some blood work which also showed creatinine levels to be off. So he also referred me to a nephrologist. In the course of blood work nephrologist did she ran lupus panel which came back positive for ANA, smith and RNP. so then was referred to rheumatologist. (My DNA labs antibodies have always been negative)

My mom has lupus and MS and I’ve had a doctor tell me in the past I have Raynauds. Basically if I’m cold my fingers and toes hurt but if I’m not cold they just tingle. They’ve never turned blue. But that happened to my mom once.

(I’ve been to ortho doctor in the past for knee pain and he couldn’t finds anything really wrong so recommended lupus labs. So 2013 I had a lupus panel done that all came back normal. So good to have a baseline.)

When I did go into the rheumatologist she said I don’t have tons of symptoms (joint pain, Raynauds, headaches, and something about mottled skin) and wanted to repeat the blood work. It all basically came back the same as when nephrologist did it.

I have another appointment scheduled for May 20th and she said she was likely going to put me on Plaquelin to slow down the progression, even though I’m in the very beginning of the disease.

I’m glad I have my mom to talk to. She definitely relates. I’ve been feeling really tired and my husband just said I’ve always liked to sleep so how is that really different… I didn’t have the energy to even try to explain it. I know it will be a challenge to make it understand, especially since I really don’t know how this disease is going to affect me. I know the worst is in front of me unfortunately. Not sure if it’s good to catch it so early or not.

Well guess that’s it. I’m glad I found this group.

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Hi, we are in same boat, I also found out my abnormal blood work at annl checkup, I have very high ANA And ssa SSB but no much symptoms, my rheumy dr want to wait for three month before start me on Plaquelin. I am too worrying what is road ahead me, and keep thinking about worst case scenario. I am also 39 too. Two boys.

3

Hi, I cannot stress anything more strongly than stay out of the sun as much as possible, When you do venture out wear a high UV count sunblock, long sleeves, long skirts, long trousers, and a hat. If you can make sure your lighting in your home of work place is not UV (florescent). Don't let anything stress you and make sure you get plenty of sleep, including a quick nana nap in the afternoon if possible.

This is what I was told by a young specialist 25 years ago when I told her I wasn't ready for a life of steroids etc.

I lived by those rules even to going so far as when on holidays at the lake with my children when they were young I would wear a long sleeve black muslin blouse over my swim suit and a baseball cap when swimming with them.

I followed this advise for many years until the last couple of summers and stupidly thought bugger this, Lupus isn't going to rule my life and then foolishly I went off surf casting whole days at a time with my new life partner, not protecting myself at all, just recently my blood started to form clots, a lupus thing, now I am on 11mg of warfarin (rat poison) daily.

Until now I have not had the need to be on any meds for any thing at all, I have gone every 2 years since my diagnoses for lupus (25 yrs ago) for heart, lung, kidney etc tests and they have always been fine. Yes I had the chronic tiredness and the joint pains all through the years, but if a flare got bad I would take 2 or 3 days and sleep day and night. You must look after yourself to keep your Lupus at bay.

I'm not saying don't go on meds, I'm telling you how I live, except for that regretful 2 summers (especially here in New Zealand with the highest UV rating in the world) to slow down the damage that Lupus does and therefore delay the time when I have to go on meds. Oh and by the way I was told I probably have had Lupus from I was a child, I am now 56.

You are young, newly diagnosed, otherwise healthy and you say not many symptoms, talk to your specialist and ask about your options re: meds verses lifestyle.

Best wishes for your future.