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291 Views 6 Replies 5 Participants Last post by  Lily
Hey Everyone!

I am new to the site posting wise, though I began reading 4 years ago (to the month actually haha) when I was first diagnosed with SLE nephritis. I had one flare four years ago which took about a year of recovery to bring me to my minimum maintenance meds... plaquenil, cozaar and multi vitamins. I am very grateful that I have spent such a long period of time without a flare but I am nervous that I am on the onset of another.

A month ago My blood pressure (which is been completely normal for the last few years) went up. I went to the emergency room when it reached 168/115. I spent a horrible night there to no resolution and my general practioner (who specializes in nephology) had me make an appt and put me on metroprlol, but my tests have been coming back fine with the exception of returning protien in my urine. It helped for a few weeks, but now I am seeing my bottom number rising again to the 100 range.

Lately I've been feeling tired, but am used to 'bad days.' It seems different this time. This past week I have been feeling very achy, tired and have had a dull pain in my chest. I have been feeling overwhelmingly depressed and have been feeling intense feelings of anger over fairly small issues when I look back on them. I remember feeling this way when I was flaring.

I am going to both my gp and rheumy in a week and a half and am nervous I am on my way to another flare. I feel like some of my symptoms are there but my tests have not been saying much. I guess Im asking if I should be expecting a flare or a false alarm? When I was first diagnosed I dont remember the initial indicating symptoms and then suddenly I was ill. Help!:sigh:
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Hi Zen and :welcome:

I'm sorry you have been having problems :(

I guess you won't really know the answer until you see the Rheumy. Did your GP run any tests on you besides urinalysis? Do you know how much protein you are spilling over a 24hr period (i.e. did he do a 24hr catch? Are there any other signs besides the high BP that this might be affecting your kidneys......such as swelling in your ankles and feet etc?

It does sound suspicious that all this is happening and you also feel very tired and depressed/niggly (((((((((Zen))))))))))

I would make sure you mention all your symptoms to the Rheumy and also what tests have been done and their results. Sometimes bloods lag behind and a good Rheumy will go more by symptoms. Having said that though if your GP has not run some basic tests such as a 24hr urinalysis, kidney function, complement levels, ANA, ESR and full blood count then there is more investigation to be done before they can work out what's going on.

Try and relax (I know that's very hard when you feel like this), but getting strung out about it will only make everything worse. If it is a flare then you know that there is much they can do to bring it under control and it sounds like they are onto it quickly.

Take care,

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Hello Zen, Nice to have you here, but sorry you feel bad.
x Lola
Hi Zen and welcome to a great place.

Hope to get to know you better.

Sorry your feeling so bad and sure hope you get some improvement soon.:wink2:
Hi there.

It is hard sometimes to distinguis a flare from other things, but I would take those symptoms as one and rest accordingly.

Good luck with your appointment and I hope that things work out for you and it is not a flare. Sometimes you just get the symptoms popping up and they can get under control. Not to stress and plenty of rest can help.

Sending warm wishes of good health your way.

Thanks for the support! Sorry I havent been able to answer as soon as i'd like to, Ive been in bed quite steadily since my post.

I went to my rheumy. She said she wants to wait and see what happens. In the mean time I have a diminished appetite (very unlike me ha!) and my mouth has been very dry constantly. I am trying very hard to keep hydrated but I have not been urinating as frequently as usual. I am not retaining as strongly as my first flare but the last few years I had no fluid retention at all and am seeing it a little now. (my fingers are puffy and sore and it stays in when i press on my shins)

I have another set of tests to take Friday and am seeing my GP and rheumy Tuesday. I have not done a 24 hr urine but I my GP mentioned it on the phone. I have a hightened white blood cell count and she thinks I could be fighting an infection that could activate a flare. It is strange because I dont have a stuffy nose, cough or urinary infection so she is at a loss. She is also talking about possibly doing another biopsy depending on my tests. They keep a close eye on my complement levels (they drop when I had my flare) and they have been okay along with the status of my kidney function as of my last test.

In the meantime I have been having back pain and am feeling pretty tired. I did return to work today and it was okay. I can sit all day when it is quiet as wednesdays can be. I am scared for the end of this week because the bank tends to be busy and I have to get up and move around alot. Luckily, I have a very understanding manager and she said if I don't feel good at any time, I can go home.

I just feel like i'm hanging in the balance and want to know whats going on. Sometimes I just feel crazy! Thanks for the advice and listening!! xoxoxo:)
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((((((((((Zen))))))))) I hope things either magically improve for you or they at least work out what the heck is going on so they can act.

The pitting edema does not sound good, but it's promising your other tests are ok. Not a bad idea to do the 24hr urinalysis though so I hope she runs it.
I had some really bad pitting oedema recently when I was away on holidays and I never get it, thankfully it settled after about a week or so. I was without my dip sticks so will never know if anything was going on with my kidneys at the time. It's happened a few times since (dipsticks fine), but hasn't lasted long. Unlike you my BP was fine though, so who knows maybe some of us just get it in a flare. I know from other signs I was flaring when it happened.

Hope you feel better soon, try and get all the rest you can and elevate those legs during the night by sticking a pillow under them.

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