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dbgirl
New Member


Date Joined Jul 2014
Total Posts : 2
   Posted 7/2/2014 8:50 AM (GMT -6)   
Hi all,
So I am am a newbie to the site, but not a newbie to lupus sadly. Was diagnosed Type III Lupus Glomeronephritis in 1999 and I still have trouble spelling it! It's been pretty mild, all things considered, but the last year there have been a number of incidents that are making my treatment more complicated. I had a visit to the GP where they found I had really unreasonably high blood pressure, despite being on BP meds (losartan), so they plunked me in the hospital because they thought I was having a flare. The blood work came back negative, but it took 3 days to get my pressure down. I developed a blood clot at one of the IV sites from the hospital stay which meant going on Xarelto and getting a hematologist, who kept me on that for three months, and found no evidence of a lupus related clotting disorder. Now he is telling me that I am anemic and that I need biweekly shots to correct this as well as possibly IV iron or a blood transfusion. Finally, I had an incident of gout in May, just to top things off.

So here's where I am at. Everytime I go to the hematologist, he says, "gosh you must be tired" after looking at my blood work. And I kind of look at him funny, because I don't feel especially more tired that usual. I'm not falling asleep in the middle of the day the way I was two months ago. God knows, I've had those days where it's like "lay down before you fall down", but no so much lately. But I am kind of wondering if this is just my normal now. Yeah I'm tired, but this is how I am.

I do have pretty much daily headaches and occasionally achy joints. I get dizzy easily and bruise easily. (The hematologist says the bruising is just one of those things that people with immune problems get, nothing to be done about it.)

And I am concerned that the symptoms that are causing me the most trouble are actually side effects of my drugs. I have a pill box that is overflowing (Cellcept, Losartan, Coreg, Levothyroxin, folic acid, B12, B6, Vitamin D, Lexapro, low dose aspirin). More than one lists fatigue, anemia, headaches, and gout as potential side effects. And I don't know how to adjust things so that I actually identify the problem. My doctors seem to be chasing symptoms, and I am not convinced that this is not causing more problems. Right now I am pretty fed up.

The correct course of action is probably just to go to one of my many specialists and try to work it out with them. I'll probably try the nephrologist first, but has anyone else had to approach their doctors with something like this? Any advice for having the conversation?

Thanks,
dbgirl

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/2/2014 11:36 AM (GMT -6)   
Welcome, dbgirl!

We have a lot of different presentations of Lupus represented on this forum, but I don't recall ever hearing about the (non-spellable) form you mention.

What Drs are you seeing? You mention a GP and a hematologist, is there a rheumotologist in there as well? Anyone else?

I find I get gout symptoms if I don't stick to straight water as my primary beverage. Some of my fatgiue was due to simply not getting enough deep, restorative sleep -- some of the meds mess with sleep. Adding Trazodone (an anti-depression med, cross-used as a sleep aid) helped my fatgiue greatly. Cellcept was my miracle drug that put me into remission (from serious, measurable cognitive dysfunction).

I don't think any reasonable Dr will flinch at all if you bring up the "maybe too many meds, so is some of this side-effects" conversation. I brought it up with my Dr a while back, and they were happy to look over everything with me. I do think it's worthwhile checking out the meds and the med interactions on a site like this /www.walgreens.com/pharmacy/library/checkdrug/selectfirstdrug.jsp first so you have facts on hand.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

dbgirl
New Member


Date Joined Jul 2014
Total Posts : 2
   Posted 7/2/2014 11:49 AM (GMT -6)   
It is basically lupus nephritis (http://www.mayoclinic.org/diseases-conditions/glomerulonephritis/basics/definition/con-20024691). I am seeing a rheumy, but mainly I deal with the nephrologist. Will let you know how things go.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/2/2014 11:53 AM (GMT -6)   
Oh, I see. We have a few members with Lupus Nephritis -- one just got a kidney transplant!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/2/2014 5:35 PM (GMT -6)   
My brother has that glom******* his went to ESRF.

He takes a lot of meds too. You need someone to be your medication/ treatment coordinator. Your primary could do this. An internist would be great for you.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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