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Posted 10/22/2007 8:06 PM (GMT 0)

Hi all,

 I think I am starting a flare. Have not felt well for several days but today I have stayed cold all day, woke up with every muscle,joint,bone aching in my body and the fatique is unbearable.  In my last post I mentioned I had some decreased kidney function GFR was 55 but the rheumy doesn't think it is related to my autoimmune disease.  I wonder?  I am going to see my PCP tomorrow who is much more responsive and may send me to a nephrologist.  What bloodwork should I ask for to see if I am in a flare.  I know sometimes Complements will show disease activity. Also started with pain under my arm last week that has moved around to my shoulder blade and hurts when I breathe.

Thanks for any suggestions.

Beth

Posted 10/22/2007 8:48 PM (GMT 0)
I am sorry to hear about your flare. I wonder about the advice of your rheumy too, but glad that you hv a responsive PCP and can provide you great help. I know that CRP, CBP are definitely the bloodwork can be done. The others might have more knowledge on that.
I hope you feel better soon.
Posted 10/22/2007 9:42 PM (GMT 0)
Hi-

    I wonder what clinical evidence makes your doc think the kidney issue isn't related to your AI disease.  Has he done any extensive testing?  I'm no doc,  but if I were you I would insist on a referrel to a neph.  I have lupus nephritis and they key to successful treatment and better outcomes is early detection and treatment.  If you have a falling GFR you probably need a kidney biopsy to determine whether or not it is related.  Really,  whether it's related or not is a moot point.  Kidney issues need to be addressed quickly!  Run don't walk to your nearest nephrologist!  Keep us updated.  Hope you feel better soon.  God Bless you,  Judi

P.S.-  I hope I don't sound like a "know it all".  I've been down this road.  I have ESRD.  It's not a pleasant trip.  Take care of yourself and advocate for yourself.

Posted 10/23/2007 12:28 AM (GMT 0)
Beth . . . I'm glad MJLD could address the kidney issue, I have no background for that. But a flare is a flare. Sometimes the bloodwork does not indicate the degree of the flare. Many here will tell you that. The blood is just one indicator and some have seen their blood work worse off when they were feeling better . . . and, if you are lucky, you will get to know your flares and you'll start to notice little things that give you a bit of a warning. I notice increased pain at night first and a few other odd things (an odd ear pain, itching that is internal, not on the skin, some bowel pain, increased malar rash, etc.) If I am proactive, I can really nip them short most of the time. Blessings!
Posted 10/23/2007 3:08 PM (GMT 0)
Thanks for everyones replies. I will let you know how my PCP visit goes today.

Beth

Posted 10/23/2007 6:34 PM (GMT 0)
cool  Just got back from my PCP. He has diagnosed me with Fibro as well as Chronic Kidney Disease Stage III.  Is going to do some more bloodwork and send me to a nephrologist in December.  Finally somebody doing something!! He said in today's exam he could actually feel bumps in the tender point areas in the Fibro exam.  I asked him why he thought rheumy did not diagnose this and he said maybe the acuteness of my symptoms and today's positive exam made it easier for him to diagnose. My PCP still thinks kidney function could be related to AI disease of some type considering I already have one auto immune disease;ITP.  .  I also have trouble keeping my potassium levels normal even with supplements.  He wants me to try amitriptyline for the Fibro.

Anyone have experience with it?  Funny in the dictiation he got from my rheumy last week he said looked like my UCTD was not currently active.  Amazing how a week makes a difference

Posted 10/23/2007 6:51 PM (GMT 0)
I have been on amitriptylene before for my fibro and it worked for awhile but I grew immune to it and it quit working then I found out that I also have degenerative bone disease so most of the typical fibro drugs aren't working for me. But everyone's diff. I hope it works great for you. IF not then there is still nortriptylene and cymbalta. During my flares my kidneys will act up too and then usually go pretty much back up to par afterwards my rheumy sucks too my pcp usually runs a sed rate on me to see if I'm flaring but in last 2 years that seems to be one continous flare for me.
Posted 10/30/2007 9:06 AM (GMT 0)
Hey Beth, I was just reading what you have been going thru and was wondering how you are doing getting thru this flare. If you are up to it please keep us posted.
hugs
carol
Posted 10/30/2007 10:53 PM (GMT 0)

Carol,

Thanks for asking.  I have had several really bad nights with alot of pain but have started yoga and that seems to be helping some.  Also just started with a sore throat and cough on top of everything else so thinking this might not be a great week.  I am lucky my husband is now retired and can do alot for me at home because I am exhausted when I get home from work.  I am having a retirement party for hubby this Saturday and If I can get thru that I am going to start trying to slow down a bit and take better care of myself.  Will keep you posted.

Beth

Posted 10/31/2007 12:15 AM (GMT 0)
Hi Beth,

  It sounds like you have been going through alot...((Hugs)). I hope the amitriptylene works well for you. Zanaflex works well for me. Like Stacy said, we are all different!

  Try not to over do it with the hubby's party this weekend and take care. Keep us udpated.

                                                          Babs

Posted 11/1/2007 10:56 AM (GMT 0)
Hi Beth, Wow I hope you can get some help with this party! Yes it is a good thing that your hubby can help you more now. I'm sorry you have a sore throat and cough. When you add that with exhaustion it doesn't sound real promising. Just remember don't be afraid to rest and ask for help. You don't want to be getting any sicker. I have thought about trying yoga sense it isn't real hard on the lungs but I have one problem with that. ............I'm lazy! but I know it would make me feel better afterwards. I used to do yoga when I was young but I have forgotten most of it.
Let us know how the party goes and how you ar feeling
hugs
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