ana test high sed rate low dr suspects lupus

[calsbabe]

:huh: i went for a check up ,thought i was depressed,been very fatigued,achy joints mainly elbows,wrists,fingers,knees and feet,one elbow i had bursitis in and had it drained,the swelling went down but is still bruised,this was in feb,my feet feel hot and tingle kinda like pins and needles with a burn,had red patch on checks ,nose and forehead ,the red patches have been there for about 3 yrs,i have lost 50 pounds in 6 months and not trying,losing hair,i went to tanning bed and burnt in 5 mins and eyes got dry ,felt like something in them and got swollen and very red,wake up at night having to put eye drops in them for about 3 days after tan visit.I am 3/4 cherokee indian so i have never had a problem with sunburn.some days i can not hardly go ,just an effort to get out of bed.my dr run blood tests and told me my ana test was extremely high ,dont know exact figure ,but that my blood count was normal and my sed rate was low.she said she suspetcs lupus and maybe another auto immunse disorder but not sure which one,has rules out rhematoid arthritis,but says i have an auto immune disorder,what does these blood tests mean? does this sound like lupus?my joints constantly ache.i am fatiqued all the time,i am stiff after being still for peirods of time,she said my sed rate being low and my ana rate high was confusing because with lupus both should be elavated,i also have alot of burning in my stomach and have lost my appetite,alot of heart burn i have had peirods of these symptoms for at least 10 yrs but they have never lasted this long ,this has been going on since dec,i thought it was stress because my father dies,my mom diagnosed with alztimers,my grandson had a crainotmy and was a victum of abuse,that all happened within 2 weeks ,that is why i thought it was stress,can stress trigger lupus ? what does this sound like?

[alobreto]

My word, Cals! :o
You have been through a terrible time! :( I don't know that stress can cause an autoimmune disease like lupus, :unsure: but it can definitely make them worse. :sick:

As your doc probably told you there isn't a specific test for lupus, so it's like putting a puzzle together to figure out exactly what is going on. Have you been referred to a rheumatologist? That would be the usual kind of specialist you'd go to for a suspected autoimmune problem, whether it was rheumatoid arthritis, lupus, or one of the connective tissue disorders.

I'm glad you have a doc who is interested in helping you get things sorted out. The sooner you get started on treatment, the sooner you can start feeling better. Some of the meds can take a long while to kick in, several weeks. And it can also take a while to get the right mix of meds that work in your specific case.

Not only is diagnosis a puzzle, but symptom relief can also be a puzzle. It's worth taking care of, though, because you can get back to being able to enjoy some things again. Maybe not like it was before, but with adjustments.

I wish you well in your quest for answers.
Angela :flowers:

[raggedyann1]

Calsbabe,

The problem with a lupus diagnosis is there is no rule that is true 100% of the time. With lupus the sedrate is often elevated and the Crp is not. Which is interesting in itself there as the Crp is a more definitive test for inflammation. However there are people like me who NEVER have an elevated sedrate and do have a very high ana titer. This has been true for 16 years now.

I hope she is referring you to a rheumatologist. The fact that you are Indian increases the likely hood of having SLE.

Let us know how things go.

Take care,
Karen

[Peaches n' Cream]

How high was your titer Karen?? Is your crp elevated or do you only have a positibe ana?

~Devon

[calsbabe]

:) thanks for all the unput,I havehad more blood tests,justwaitingfor them tocome back,and yes my dr is referring me to a rhemy,i suppose to go the end of june,Thanks again for the input.I will keep every posted .. :wave:

[raggedyann1]

Peaches and Cream,

My ana titer has been as high as 1:1280. No my crp has never been elevated either.

Karen

[susan01]

I think this is interesting thread because my sed rate has never been higher than 16 (normal) too. I felt so ill, and the docs would look at my sed rate and think there was nothing wrong with me.

This is happening with my daughter now. Her fingers were so swollen that I thought they were broken and her sed rate was 0!

Susan

[Tylers Nana]

Hi Karen,

I do not have a dx as of yet but my ana is also 1:1280. On one of the other posts someone said that the higher the ana, the more likely it is that you have sjogren's and not lupus. Is this true? I have never heard of that before. So because my ana is so high are my chances of having sjogren's higher than lupus? My sed rate was very low at 5.

I would appreciate someone clearing this up for me. I have never heard this before.
Thank you,
Janice

[raggedyann1]

Janice,

I have never seen the actual data about Sjogrens usually having a higher ana. What I have heard is when it is at 2560 and up is Sjogrens. But again I have never done a search on that as I don't have sjogrens. Sjogrens is very similar to lupus in many ways but it also is like lupus in that it can be very mild or very severe.

take care,
Karen

[Tylers Nana]

Karen,

Thanks so much for your reply. Wow an ANA of 2560! That is really high. I didn't know how high it could go. I really appreciate you writing back. Thanks again.

I hope you are having a good day.
Janice

[gretchenb5]

This IS an interesting thread! I was just reading about Janice's granddaughter (I think) who had a sed rate of 0 and really swollen fingers, and I was thinking about something my dad told me the other day. He has RA, polymyalgia rheumatica, sjogren's and sarcoidosis (for starters -- he has other stuff, too). Anyway, he was diagnosed with RA at age 35 with a low sed rate and negative rheumatoid factor. He didn't have a rheumatoid factor show up in blood work until he was in his 50s, and his arthritis is pretty severe now (shows up on X-rays clearly, and he has very little range of motion in many joints and lots of swelling). His sed rate usually didn't go much above 15 or 16, but is now in the 60s.

I think Karen has said many times before, blood work and numbers can sometimes take years to catch up with the disease, symptoms, and the injury it has played on organs. It's really strange how differently it affects each of us, what it looks like, and how the blood work turns out.

Just from reading on these lupus boards, you can see that some people's blood work is really indicative of where their disease is -- if they're flaring or if something is currently active. With lots of other people, though, it's almost meaningless as far as their current symptomology and how they feel at that moment.

This was all really good for me to learn -- I had no idea how disconnected it could actually be! :doh:

gretchen

[zara]

Hi Calsbabe,

I am mixed race too: black, white and Cherokee. Sunburns have never really been an issue for me either except on my face. This was of no significance to me until this year. Especially when I went to LA and wore 30 SPF sunblock and got burnt while my all-white, Scandinavian boyfriend got nothing but a nice tan.

I get the pins and needles tingling thing too and have developed a sensitive stomach over the past couple of years. I used to be able to eat anything.

I hope you find some answers soon. :luck:

Sincerely,
Zara

[calsbabe]

:o I just come back from the dr,say i have sjorens syndrome and lupus:afraid: ,put me on salagen and hydroxychloroquine,hope this works ,i am so sick and tired of being sick and tired and this burning in my feet is very annoying.just wanted to give an update,going to rhemy next week.if anyone else has this too and know anything that helps with this fatigue please let me know ,i am willing to try anything,it is just an effort to getout of bed..thank and good luck to all :wiggle:

[Lily]

Hi calsbabe,

It's all a bit scary when they actually tell you what they think you have, make sure any questions you have for the Rheumatologist next week, he answers them. That will make you feel more at ease with all this. Once the meds kick in you should start feeling a little better, its important to take precautions with sun exposure though, wear sunscreen, hat and long sleeves when exposed and try and limit exposure - the sun can make our symptoms much worse.

It's not uncommon to have both Lupus and Sjogrens, I do. The fatigue you are having should be helped some when the Plaquenil starts to take effect and gets the disease under better control. That could take some months though, it's a good drug and often the first one they place us on, and all some people need. It can take 3 months or more though to start altering the disease process. If you are still in pain and having problems with your feet etc. the Rheumatologist may give you another drug to help relieve your pain. Make sure he realises just how rotten you feel though,many of us fail to make that clear and suffer unneccessarily as a result whilst waiting for our Lupus meds to kick in.

Try and get as much rest as you can, reduce the stress in your life (as far as possible - not always easy I know) and eat a sensible diet. Then let the drugs do the rest for you :flowers:
Good luck and try not to worry, and let us know how you get along with the Rheumatologist.

love
Lily