ANA 1:5264 Do you feel worse the higher it gets?

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Josborne
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Date Joined Mar 2011
Total Posts : 19
   Posted 3/11/2011 1:27 PM (GMT -6)   
I was just curious...does anyone else feel worse when their ANA's are high?  Mine are double what they were in the fall (1:2430).  For 3 months or so I felt better.  Then wham 4 weeks ago I started feeling, well you know aweful!  I just had my routine blood work done and my ANA's were higher (1:5264).  I didn't have them tested when I felt better.  So I was just wondering if anyone has noticed the difference personnally.

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1470
   Posted 3/13/2011 7:48 PM (GMT -6)   
Hey there! I have never heard of an ANA going that high. Are you sure the ANA titer is what you are meaning to refer too? What pattern of titer did you have?
Here is a good website that gives a lot of information on the ANA!
 
http://http://arthritis.about.com/od/diagnostic/a/ana.htm
Amy
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Josborne
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Date Joined Mar 2011
Total Posts : 19
   Posted 3/16/2011 10:00 AM (GMT -6)   
Yes, it is my ANA.  They are crazy high.  My dr. doesn't know why they are so high.  But like he says, we treat the patient not the lab results.  I just know I feel worse than when they were lower.  I was curious if anyone else had the same thing happen?! 

Josborne
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 3/16/2011 10:15 AM (GMT -6)   
I just noticed that everyone puts down what their illness is and what meds they are taking.
 
Lupus, Reynauds, IBS...extreme fatigue, neuropathy in upper and lower extremities, mental confusion, depression, anxiety, insomnia, weight loss ugh...this list makes me depressed just writing it down turn
 
Plaquenil, DGL, Slippery Elm, L-Tyrosine...I stopped taking Aleve (4 tabs) a day because it gave me an ulcer.  I would rather be in pain than not be able to eat. 
 
So there it is...
 
I am doing well today and I am always grateful for any responces!  Thanks. 

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/16/2011 10:21 PM (GMT -6)   
Hi there,
 
wow, that is a high titre! I haven't heard it go that high either.  I was diagnosed at 1:640.  Had my ANA tested a few times over this last decade and I can't really say either way how was feeling in relation to the titre.  It would make sense to me that if the number was high, you'd be feeling worse.
 
Have you ever been on Prednisone? Any immune suppressants like Imuran?   Do you feel like your current meds are working for you?  I'm glad to hear that today was a good day for you.  they're hard to come by sometimes!
 
 
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Cellcept, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

Josborne
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 3/17/2011 9:57 AM (GMT -6)   
Thanks for responding.  To answer the above questions:  I am terrified to try steroids...Diffused Speckled is my pattern which only means I have an Auto-Immune Disorder...My current program is working pretty good.
 
When I switched to a whole food diet I felt improved.  It is hard to stick to sometimes, but it is keeping me from steroids for now.  So it is worth it!  I couldn't hardly use my hands and was falling down all the time.  When I cut out dairy, white flour, sugar and salt I noticed 85% improvement.  It is hard, because I have a sweet tooth.  But when I let it sneak back in I feel aweful with in several hours.  Salt is a hard one because it makes everything taste better with even a little bit of salt. 
 
When I was first sick someone recommended eating this way and I didn't even give a thought.  But as I got sicker and sicker I gave it a try.  I don't eat much meat either.  My friends tease me that I am a closet vegan.  I just know what makes me feel like dying and I try to avoid eating those things.
 
I wish there were more people with Lupus who were trying alternative therapies.  It seems like all we are encouraged to do is take meds.  Everyone I know with Lupus complains about it but there is a shortage of examples for alternatives.  If anyone has any resources please let me know.  I am compiling a list of things that actually work.  Because lets face it there are bogus claims everywhere.  It took me a year of trying a list of 20-30 holistic therapies. Then weed it down to a handful of things that worked reaaly well.
 
Ok, enough about me.  Be blessed...whoever you are reading this...in whatever is hard for you today!
 
 

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 3/17/2011 10:24 AM (GMT -6)   
Wow, I have never heard of a titer that high either!  I never knew it went that high.
I agree that its so important to watch your diet.  Be careful though if you go veg or vegan as we with lupus are more risk at becoming anemic (I just found out that I am iron deficient) and can cause problems so you want to make sure you are getting good sources of iron.
Take Care

DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 3/17/2011 11:14 PM (GMT -6)   
Well, I certainly cannot speak for anyone but myself, but I have learned that unless I am getting the daily recommended amount of PROTEIN I feel like S**T. Many healthly women don't eat enough protein either.

It's the stuff that keeps our cells growing and regenerating, folks! Try some, esp. what I call "clean protein" - not a lot of additives or fancy cooking, simple non-processed meats broiled or baked!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/17/2011 11:48 PM (GMT -6)   
Hi, i do a combination. To many problems to list today. i need to do that where it is automatic at the bottom. Things that are more holistic that do wonders for me are Physical therapy and massage, I was told to take a probiotic from a health food store from the refrigerator by my lung dr. as i have Gerd and ibs as well. He also told me to go with more of a south beach diet and i do but i have modified it for our budget, basically I try not to eat anything with more than 4 ingredients in it. and I have to know what the ingredients are.

I am extremely sensitive to aspartame, and most artificial sweeteners, sodium nitrate, so any meat that has preservatives not for me.. when i lived in Michigan i bought all my meat from a farmer who fed his animals but they had NO hormones injected. With my health i just haven't been able to do that as much out here financially, buying a half of a cow or pig well not as cheap as a pkg of ground beef lol.

I take methotrexate and orencia, the metho is taken one time a week and the orencia is an infusion one time monthly that kills my t cells, then they don't want to attack myself because they are not there. I really notice these meds helping with a lot of things ... i try not to pay much attention to my numbers i get a bit obsessive and stuff, i have had an ANA like that or around that, i was in a flare. and it was the only time i knew my number because i finally was diagnosed with SLE. My sed rate had been high for years. my dr. suspected auto immune but that is a needle in the haystack if you are not showing what they want on paper.

I am a big supporter of everything in moderation, you do need protein and for so many reasons, if you are uncomfortable with the meat, edamame is great and high in protein, i switched to soy milk, high in protein and i developed allergy to milk. I don't know who said they were Iron (Fe) deficient but you may want to ask your dr. to run a full metabolic panel. B12 is an intrinsic factor and i know you can buy it in a bottle but if it is low, it is made i believe in your pancreas and very hard to get naturally, it is much more effective in a shot form, if i remember correct it should be about 1000 mine was about 300 i took b12 shots for 7 days and that was 6 years ago and my levels are still good. but whoa i was on meds for narcolepsy... i was over the top tired. all from a simple deficiency that is not normally checked.. there were also a few minerals and such but the b12 was huge.

I wish you all more joy each day, finding laughter in simple things and learning to slow down and simplify... I wish this for you... then you can teach me how to do it better. thanks.

I have appreciated this site for somewhere to go and vent, or be encouraging to others whether it is in this forum or another. Pain is pain, and it comes in multiple forms. I am grateful that there are so many people in the world with their eyes wide open and looking outward to share and give empathy to others, it is necessary at times to have our own pity party, but better to know that all of us are very normal with unusual conditions.

No offense intended to anyone any where...

Each night when i go to sleep I say what i am grateful for and i pray for those in the world, most i don't even know, and family and such, but i have added this Forum/ web page, not because I think we all need miracles... but because i think to each other we are miracles surviving each day and to me that is a blessing beyond words.

May tomorrow bring you joy, a bit of health and baby steps towards quality of life.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 3/18/2011 8:11 AM (GMT -6)   
Hi panther,

Yes that was me who mentioned I was iron deficient. It was my iron storage, not my iron serum that led my dr to know about my iron deficiency. My ferritin was at 13 which he said that anything under 50 is low and anything under 20 is way too low. I'm going to discuss with my other doc if they want to give me iron injections to jump start the process or continue what they just started me on the ferrous gluconate (I realize ferrous sulfate is better absorbed but it doesn't absorb well if I can't keep it down LOL - the fe gluconate doesn't bother my tummy). I eat plenty of iron rich foods, I think the problem is either I'm not absorbing well or I'm eating foods/drinks that counteract the absorbtion. (ie. I love Iced tea and drink it often, found out the tannic acid is very bad for iron absorption).  I also have a history of GI bleeds and idiopathic colitis or that may be creeping up or be contributing to the problem as well. 

I did and have had my B12 levels continusly monitored also. I was under the B12 range low a few years back and now being treated for it and now in good range.
DX:SLE, Sjogrens, Raynauds, Migraines, Occipital Neuralgia, Morphea (Localized Scleroderma), Iron Deficiency Anemia, IBS, Diverticulosis

Meds:Prednisone, Plaquenil, Sulindac, Tramadol, Topamax, Xanax, Imitrex, Fiorinal, Prenatal Multi, B12, Vit E, Calcium, Fish Oil, Biotin, Ferrous Gluconate, Baby Aspirin

aapbe
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/23/2011 4:21 AM (GMT -6)   
I came across this forum when (indeed) searching for the relationship between having a high ANA titer and feeling worse. I too have a ANA titer of 5120, it could even be more since the labo told me that they stopped testing at 5000, so actually it says on my tests +5000.
I also have a positive AMA (indicating a very strong chance of primary cirrosis) and symptoms of lupus, sjögren and myasthenia gravis. I have also my left eye that doesn't follow my right eye anymore (you could say like a chameleon, except for the fact that a chameleon is used to it because it's in his genes). And since about a year my legs and feet have gotten to the point that I'm about to get a wheel chair.
I've been feeling sick since and haven't been a day without pain in 11 years, I am since 2 years on disability, went to a gazillion specialists, had all possible tests and scans done (repeatedly) and still basically know nothing yet, except for the fact that I have a "most likely but yet unidentified auto-immune disease".

aapbe
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/23/2011 4:33 AM (GMT -6)   
Forgot to add: Except for the fact that I'm taking pain killers and xanax and a mild Non-steroidal anti-inflammatory drug, I'm taking NO steroid nor anti auto-immune medication because my rheumatologist won't prescribe anything because and I quote "if something goes wrong, you are going to sue me for all I have". (not kidding)

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/23/2011 9:50 AM (GMT -6)   
((aapbe))....my goodness, I'd be looking for another rheumatologist ASAP! Maybe you should tell him you may as well sue him for refusing to treat you!!! Really - a good rheumatologist will treat your symptoms and pain, and with an ANA that high - it shouldn't be such a struggle to begin with something like Plaquenil or Prednisone. Pain killers are doing nothing to suppress your disease, whichever one it may be!

Hoping you get some real help - keep us posted.

aapbe
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/24/2011 2:48 AM (GMT -6)   
That's exactly what a doctor-physiotherapist said when I visited him the other day. He was shocked that I don't get any treatment, and yesterday he called me (although it's not his job to do this, I'm no regular patient of him) to give me the name and address of a rheumatolgist wh seems to care about his patients, not about his publications in medical magazines (like the previous one).
The wife is going to give him a call today to try and get an apppointment, so I'll certainly keep you posted.

Josborne
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 3/27/2011 8:02 PM (GMT -6)   
It has been a funny week.  I tried to experiment with adding some chicken back in to my diet.  Usually I have a soy protein shake with my oats and fruit for breakfast...some sort of bean, tofu protein at lunch with a pile of veggies and fruit...for dinner a grain with veggies, fruit and maybe a liltte sweet ( baked apples, soy yogurt, soy milk pudding, granola ect.)
 
Every day I ate the chicken my joints hurt till the next day.  My hands felt like I had been using one of those stress balls all day.  When I went back to my legumes pain was gone.
 
I also had been really good about no sweets.  I still use honey, or agave in moderation, with stevia.  I use light olive oil instead of butter, and whole wheat instead of white (at leats half in half...if not all the way).  I had some well-meaning friends bring over desserts and I severely paid for it.  I was throwing up, even more tired than usual if you can imagine, and my concentration was shot.
 
So I am back on the straight and narrow because I feel like hell when I am not cautious.  That doesn't mean I don't eat anything fun.  I make honey wheat bread that is so good it doesn't need butter on it.  My husband makes a great 3 bean chili that goes good with cornbread.  My children have grown up to expect fresh fruits to snack on, and several veggies to choose from at meal times.  They thrive on hummus, grape leaves, wheat pasta with fresh tomato sauce, popcorn and olive oil.  The list goes on and on.  That is not to say they don't love mac and cheese from a box now and again, but it is made with soy milk, and olive oil and whole grain pasta.
 
I guess I just wanted to tell you that what you eat really does make a difference in how you live with Lupus. 

Josborne
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 4/2/2011 10:01 PM (GMT -6)   
Just a quick question. Does anyone feel worse around wood fire heat? I have never put the two together, but recently I was having an aweful day and when I went outside I slowly felt better. My house is clean, so I don't think it is a dust/ashes issue. I did have the stove pretty warm, but not too bad. So I am not sure if it was just the increase in temp. or if it was the dryness or something else entirely. But this is not the first tie I have felt worse around wood heat.

Any ideas?

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/5/2011 1:28 PM (GMT -6)   
When my RNP levels raise, I feel more sick. My ANA titers are pretty stable, and usually remain the same.

tear
New Member


Date Joined Apr 2011
Total Posts : 7
   Posted 4/8/2011 12:51 PM (GMT -6)   
my ana is 1:5150 also very high too my dr thinks i have a connective tissue disorder..im going to see the rheumotolighst in may...

Ms.MamaD
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted Yesterday 12:26 AM (GMT -6)   
@aapbe my mother age 50 had high levels as yours she had hepatitis c severe Lupus was affecting her liver and pancreous she had blood vessel problems depression swelling and butterfly rash in much pain heart murmer enlarged liver cist on her kidney she knew I was sick too so she wanted to help find a cure for lupus to help me.she began taking experimental surveys and drug testing in hope a cure would be found she was to sick and suffered a lot my brother and I found her dead in her apartment.she was there for 2 days before we found her my grandmother also passed with Lupus and cancer at 72yrs old. I am a 39 year old female who so far been diagnosed with Sjögren's disease with a Ana titer of 1:640. They think my mother had a stroke when she passed.I'm not trying to scare you or anyone but please do your research and if you have high Ana or other abnormal levels take it very seriously and go to a rheumatologist or follow up with your Dr. before it gets worse.
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