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LUPUS UK
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My lupus made a come back ..

After being in remission for almost two years, some flare up has started. I had my quarterly checkup last week and my urine protein creatinine ratio has increased beyond the normal range. And I'm starting to feel joint pain at the wrist, abdomen, arms, neck, shoulder, chest and ankles. Time to push the panic button? My doc prescribed a higher dosage of prednisone as a first step to control it. I went from 1 tablet to 4. And he asked to see me in one month's time instead of in three months. He said if there's fever, to see him immediately.

I'm analyzing all my activities since my previous checkup, and will have to cut my source of stress from work and physical activities.

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I am sorry to hear that. Hoping it settles back down again quickly.💚

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Thanks for the well wishes :) I'm sure the attack will subside soon.

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Yes I hope you will be feeling better sooner rather than later...BTW did you paint your Wolf and butterfly??? I really like it...maybe it is a dog??

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Hi Leslie, thanks for noticing that! It was a colourful wolf with a butterfly on it's nose 😊. I did it with colour pencil first and then my friend got it touched up using some painting software.

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Beautiful piece of art xo

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Hi ll l'm

Sorry to read your flaring after being in a two year remission!. That's really tough to adjust to after so long. Glad your Rheumy wants to see you sooner and hope the steroids work their magic and your better soon in time for Xmas!. X

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Yeah I had a thousand thoughts going on in my head when I first got to know it. But I guess since I have accepted it in the first place when I got it, I could do the same this time round as well. :) Thanks for the well wishes. X

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Xx..that is upsetting....

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I like you good positive attitude about going right back in to remission!!

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Hi , can I ask when you were in remission did you not get any symptoms at all ? My Renal consultant said that from a renal point of view I am in remission yet I still have joint pains , extreme fatigue etc and my latest renal results showed PCR of 36 and urea 8.9 . I had protein leaks in my urine for 14 years , this only stopped when I was put on ibersartan for high blood pressure something I don't believe I have , blood pressure only high when I go for hospital check ups , it's fine when I check it and when my chemists check it . I collapsed in march due to a vasovagal episode and so I stopped ibersartan thinking that could be the cause of the drop in blood pressure , when I stopped it the protein leak in my urine started again . Renal consultant insisted I start the ibersartan again because it stops the protein leak in urine . When I said the protein leak in my urine has only stopped due to ibersartan he said the fact that the ibersartan is working indicates chronic disease rather than active lupus , I really don't get it .

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Hi Buffy, I did have some mild degree of joint pain during my remission, but it almost goes away in maximum two days' time. My PCR did not raise beyond the normal range during my episodes of really mild flare in the past 2 years. However this round it has triggered an alarm because of the PCR readings. It is more alarming than joint pain since joint pain is so prevalent that you will immediately notice, not for kidney involvement that you will not know until you see the numbers. (And that is when you start to freak out)

Your PCR of 36 seems rather normal, below the 50 point, so I suppose there was no kidney attack at this point of time.

In terms of your last sentence 'When I said the protein leak in my urine has only stopped due to ibersartan he said the fact that the ibersartan is working indicates chronic disease rather than active lupus , I really don't get it .'

My thoughts are this:

The nephro guy is saying that due to the level of scarring (damage) of your kidney tissues (expansion of the holes because of the attacks), there will be a leakage going on all the time (chronic disease), but it is not due to lupus activity, ie lupus actively attacking your kidney now. This is how I perceive it. But then again of course I am not the doctor.

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Hi on the figures I get , I see the results online , it says normal PCR is 15 or below and mine in the past has been around that figure although i only have this years results , previous test it was 18 and so 36 is a big jump , only other time this year it was a lot above 15 was in may when it was 80 for some reason . I would like to come off the medication if I am in remission but he said I can't I have to stay on the myfortic and steroids to keep it in remission , I'm sure some people do come off the medication . The medication causes so many problems , I have osteoporosis now after 15 years on steroids , had an acoustic neuroma which I was told could have been caused by plaqueinil , surgery for that left me completely deaf in my right ear and I have a permanent loud humming noise in my head now and balance problems following the surgery , and then of course there's the risk of infection when immunosuppressed I almost died in 2011 from meningitis and have had other infections which have put me in hospital , I wonder sometimes whether the medication is worth the risks , I'm also on warfarin for life now after having 2 large blood clots , I'm stuck with that . My next appointment is with renal and rhematologist together to discuss this because I said I wanted to stop the medication so will have to see I think the renal consultant just wants the rhematologist to confirm what he has said , that I have to keep taking the poisons .

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I suppose the units for PCR could be different. Was yours the same as the picture I post above? Numbers above 50 are flagged out as unusual.

Yeah I suppose we never want to have all these toxins in our bodies forever, and I was hoping that I could just maintain one prednisone per day and one cellcept, I even had days I never took prednisone for some time. Guess that is when it fell off cracks.

In terms of osteoporosis I read somewhere it says those supplements help but to a limited extent. Whenever possible exercising is still the best way to prevent that. I do strength train before the flare up, but I don't think I can do it for at least two weeks, my wrists are acting up and I can't lift heavy stuffs.

I think it's great that the rheumy and nephrologist is getting together to decide what's best to better control the lupus. But I think the key thing you could do now is just to relax and don't worry too much about it first.

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No my results don't look the same as yours , I receive mine online on something called patient view , you get a result and it tells you what normal range is and gives explanations . On mine PCR says normal range is below 15 , 15 to 100 increased leak . Urea it says normal range is 2.5 to 7 , mine was 8.9 this time . I suffer with my wrists a lot , that's usually first sign of a flare for me , get a horrible aching in the insides of my wrists then my fingers and hands start to swell . At the moment it's my feet that are the worst , I have had sore ankles and soles of my feet for months now , walk like a penguin when I get up in the morning , it seems constant don't know if it's a lupus thing or not .

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