Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Shespott 02/24/2015

I have lupus sle. Moved to Utah from Georgia 18 months ago to be nearer to family. Problem is, there aren't very many rheumatologists in Utah and I have been on a very long waiting list to see one. My GP is not comfortable treating my lupus, but has kept my medications refilled etc. I have had occasional issues with infections (flu, kidney, etc), and he has sought outside resources to help him treat me correctly. This last month has been hell (actually most of the winter). I am soooo sick and my lupus is raging. He has now called the rheumatologist and has me a definite appointment in April, but is trying to get me in sooner. He has had me on heavy doses of prednisone for 10 days. Today I ran out, so I went back in to see my GP and he is giving me more prednisone, but ran a ton of blood work. There are 2 tests which are sendouts...so I don't have those results yet. My question is...my BUN is 25.5, my BUN/Creat Ratio is 32.3, my WBC is 17.3, my Hct is 47.3, my Segs are 74, my Atypical Lymphocytes are 2+, my absolute granulocyte count is 12.8. I have blood, protein, and bacteria in my urine. The receptionist at my GP said he wants to wait for his 2 sendout tests before he does anything to get the full picture. My worry...it looks like I have an infection brewing. I feel horrible, and the longer I go (esp with prednisone and cellcept), the worst the infection will get. What are y'all's thoughts? I am so tired of feeling miserable. My malar rash is so red and painful, my joints are so swollen, my heart keeps racing.

nanny1611 02/24/2015

Sorry to hear of all your current difficulties, Shespott. For myself, I try to be proactive and always try natural things, as long as I know they won't interact or interfere with meds, etc. For instance, eating gluten-free is extremely helpful to me, because gluten raises my inflammation levels, Certain supplements help me, especially InflamericZyme (for inflammation), Lauricidin, vitamin d3, and magnesium citrate. I also must avoid artificial sweeteners, as even a few swallows of diet soda pop will cause me great joint pain. And I use coconut oil for skin issues. Getting a gentle massage is also soothing for me. Maybe you could do some online research and try safe natural things until you can be seen by the doctor. Best wishes to you for feeling better.

MToennis 02/25/2015

Could be a urinary tract infection for starts. Do you hurt in the bladder or kidney area? Start by pushing lots of fluids and if you hurt in those areas let the Dr know and see if you can get an antibiotic. He may have sent the urine out for a culture and sensitivity. My Dr gives me an antibiotic in the meanwhile and changes if the culture shows that the first antibiotic will not work. If you have reactions to antibiotics, he may be hesitant to do that and want to wait until he knows for sure what will work.
As I recall, a BUN that high could indicate a kidney problem other than infection, but the infection could make that worse.
I wish you luck.
Mary Ann

nanny1611 02/25/2015

If it is a UTI as MToennis mentioned, definitely drink lots of fluids such as water and 100% cranberry or apple juice. My doctor also told me to avoid drinking tea, because the tannins will irritate a UTI. In addition she told me to take supplementary cranberry pills. According to her, inflammation in the uterus will cause a UTI. Another thing that I have found helpful is a "tea" made with 8 oz. warm water, 1 tsp. raw honey, and 1/2 tsp. cinnamon. This drink has helped me many times.

AnnNY 02/25/2015

If you have an infection, why isn't your doctor giving you antibiotics? You can take antibiotics and prednisone at the same time.

nanny1611 02/25/2015

Correction--"bladder," not "uterus." Brain fog day.

Shespott 02/26/2015

Update: I have pleurisy. I had a cardiac workup done this morning to make sure I don't have a pulmonary embolism or cardiac related issue. It is pleurisy, so I am safe. My GP said my labs are so out of whack mainly because of the prednisone. He is tapering me off of it now. The good news is, he got me in to see my rheumy a month sooner (March 10th), so I will hopefully get some better treatment. I am gluten free and try to avoid artificial stuff...but the thing I've found the most helpful lately is Epsom salt baths. Thank you all so much for your advice!!!

nanny1611 02/26/2015

Glad that you got some answers, Shespott, and that you are seeing the doctor sooner. BTW, epsom salts is a form of magnesium.

Kristina1 02/27/2015

Hello,
I am very sorry what you are going through with this flare-up!
I would like to add whether it could be that your body reacts allergic to the treatment and medication you are taking?
I mention this because I also suffer from SLE and MCTD and many other "components" like kidney disease etc. and for many years I have also suffered from drug-intolerance and allergies, meaning that to most treatments my body has been reacting allergic to,
whith the result, that for many years I was practically left without any Lupus/MCTD-treatment, except the most necessary treatment, like my daily antihypertensive medication...
Please consider this option of allergies as well and I wish you good luck,
Kristina.

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