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ssingh
03-15-2009, 09:15 PM
Lets disscuss about DS-Dna test or some other test, how they corolate and how you fell. I my case when my DS-Dna number gets high, the worse I feel. Discuss other test like ESR, WBC....with the actual numbers. I know some time blood test does not reflect how you feel.

Faith
03-15-2009, 11:59 PM
Hi SSing,

Welcome to the forum.

Anti DNA by Farr goes up along with sed rate, C3, C4 numbers will drop reflecting inflammation. My sed rate doubled and I have felt inflammed over the Winter from fibro and joint pain from Lupus although my rhuemy says I'm "okay." I sometimes think the numbers don't reflect what you are really feeling as far as inflammation. My C3 and C4 don't normally drop that much, but my sed rate increases along with my anti-dna.

I don't know if this helps or not. I primarily watch my sed rate and anti-DNA by Farr. Look at the pattern of labs every 3 months and compare. Talk to your doctor and see what he/she says.

Take care,

Faith

sick n tired
03-16-2009, 12:19 AM
Hey,

My doctor calls the double stranded dna test or ds dna his lupus marker...when mine is high then I am usually pretty ill. The sed rate, however never reflects a flare...interesting. My doc said that I wasn't reacting right...whatever...

red246
03-16-2009, 06:10 AM
Well, I've only had these tests done once so far. Both were high according to lab results. I felt like poop at the time. My complement levels were within normal range.

ssingh
03-16-2009, 09:01 AM
Hi faith
What medications are you taking?
Mine Sed rate never goes higher it is always at 1 or 2. when my DNa is start to go up I really start to feel bad. as my doctor said DNA test is marker how ur lupus is doing.

sick n tired
03-16-2009, 10:04 AM
Like you ssingh...my sed never gets higher than high normal. Even when the lupus marker is off the charts.

ssingh
03-16-2009, 02:44 PM
Anyone on cellcept without organ involvement?

Faith
03-16-2009, 02:50 PM
Hi Ssing,


The list of medications is too long!! lol.

For Lupus, I am on Plaquenil 400 mg. For Fibro I am on clonazepam, Flexerill, zanaflex, Soma for break-away pain and Vicodin for joint or back pain. For Hughes Syndrome aka Anti-phospholipid Syndrome I take aspirin although eventually I will have to take blood thinners. I take Prilosec for GERD, Restasis for Sjogrens along with three types of eye drops, special toothpaste, creams for psorasis (spelling?) and Lupus, meds for chronic fatigue, and thyroid medicine. I hate taking so many meds. Like many on this board, I never want to be labeled a hypo-chondriac. Don't want it or need it.

My Sed Rate is normally 10; currently it is 20. Previously my Anti-DNA by Farr was 12 and it is now 9.0 which is better. I have joint pain, but nothing like in the beginning where I crawled from my bed to the bathroom. Couldn't walk; legs locked up and felt 100 lbs each.

I have more issues with Fibro; it kicks my butt along with osteoarthritis and disc degeneration in my lower back. Fibro never gives me any rest whatsoever; neuropathy, nerve pain in feet, etc.

Lupus is currently under control until Summer comes and then I deal with the lesions and fevers which is nothing compared to many on the board. I have vegetation on my heart and leaky heart valves that is related to Lupus. It has to be monitored yearly. I try to keep a positive attitude and lots of naps. lol.

Take care,

Faith

ssingh
03-16-2009, 02:58 PM
My sedrate is now 1 and dna is 16. At least you are not taking prednisone and cytxan drugs like cellcept or imuran.

Faith
03-16-2009, 06:19 PM
Hi Ssing,

No, I am not taking Cellcept or Immuran and for that I count my blessings daily. :cute:

In the past, I have taken prednisone numerous times; instead I take Kenalog (cortisone) injections (60) every three months as it is not absorbed by our organs which is much better than taking the pill form of prednisone. I also get an injection of gammaglobulin every three months to boost my immune system in order to not get sick. It has really helped.

My neighbor was on 50 mg. of prednisone for 15 years which has blown out her organs and is creating organ failure.

My doc said that if my Dna went higher and there was no organ involvement, the next step would be methotrexate injections. Maybe ask your doc about methotrexate injections??? Just a suggestion as it may be less expensive than Cellcept or Imuran maybe with less side-effects? I am not a doctor; it's just a suggestion. I wish you the very best and I hope you are feeling better soon.

Keep us updated.

God Bless,

Faith

mortifiedat52
04-04-2009, 01:35 PM
my dna (ds) is 75...

Faith
04-04-2009, 03:02 PM
Dear mortifiedat52,

Wow!!! What meds are you currently on? That is over the top high!! I hope you get control of it. I am praying for you.

God Bless,

Faith

ssingh
04-04-2009, 05:55 PM
that is high, I start to feel bad when mine is around 13. What medications are you taking?

mortifiedat52
04-05-2009, 04:51 AM
i'm taking cellcept (2000 mg/day) and prednisone (5mg/day)..

before that i was taking the predisone and imuran and steadily getting worse.. so at my last appointment, i told my rheum it wasn't working, something has to change, it's time to roll out the nukes...

my rheum assures me that this is "very aggressive" treatment... i've gotten better, but still have pain in my hands and feet all the time... trying to be patient and give these drugs time to work...

i could tell that my rheum was shocked by my high dna test.. but i didn't realize how bad it was til i saw the numbers from other people on this thread..

ssingh
04-05-2009, 09:51 AM
In my case why DNA was not going down so I went with 5 treatments of IV Cytoxan. After the first IV treatment it cut the DNA numbers in half. then after that I been on Cellcept 2000mg and predinisone 7.5mg and 400 Plaqunil for last 10 yrs as maintenence. I did ok and keep my DNA numbers around 10.
hopfully things work out you for good.