The Rheumy said that even though the last tests were negative, he was sticking with the dx and said it meant that there was a good chance that I wouldn't develop the severe symptoms.
There are a lot more numbers on the tests and I don't know if they are important so just ask if I didn't list something that would be relevant. Don't rush to do this either as I know how limited good time can be sometimes. Thanks again for being such a good support person, Ann
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Jeri
03-04-2001, 05:38 PM
I've pasted your last post onto this one, so I can be sure to cover each of the tests you listed. I, too, have a hard time remembering or flipping back and forth to be sure I didn't leave anything out.
ANA screen: Positive
A negative would pretty much rule out SLE. However 5% of the healthy population has a positive, but ususally with a low titer and homogenous pattern. Positive lascks specificity and can be seen in many autoimmune diseases, chronis inflammatory or infectius diseases or may be drug-induced.
ANA Titer Speckled: 1:1280
This is a pretty high titer; the description refers to what the nucleus looks like. speckled according to what I have is found in many disease states including SLE and scleroderma.
DNA AB crithidia W/RFX: Negative
What my list shows is that this is helpful in differentiating between SLE and other autoimmune disorders.
ENA AB (SM/RNP): less than 16
low titers seen in SLE and other AI diseases. high titers indicative of mixed connective tissue diseases.
DNA AB (SS), (IGG): Negative
I can't find this one- but the IGG refers to immunoglobulin which is what they look for in acute and chronic inflammation- may be to screen for liver &/kidney involvement.
SCL-70 AB, EIA: negative
this tests for systemic slerosis/f=diffuse sleroderma
Centromere AB: Negative
screens for CREST ofsyndrome of scleroderma , possibly for Reynauds.
S-TSH: 2.1
Thyroid Stimulating Hormone levers. Normal is 0.30-5.00
HEME & CBC: There's a whole list of things & I don'g know what is important.
Routine Chemistry: Again a list, here are some....BC ratio 19, Total Protein 8.5;AG Ratio 1.1; Rheumatoid Factor, Quantitative 8.6
*rheumatoid factor is not always positive in SLE. it is more indicative of Rheumatoid Arthritis if elevated. Normal value for RF is 0.15. (mine is less than 11 and I have SLE and other autoimmune diseases)
total protein by my list: normal is 6.0-8.0, your 8.5 is slightly above that- has to do with kidney function, I believe- but your urinalysis looked normal
Ann, look for c-3 and c-4 quantitative and ch50 blood and c-reactive protein.
Those are all tests that show the dr each visit whether you are still in a flare, one is starting up or your lupus activity is down. it also indicates whether the kidneys are involved.
I've seen a lot of folks quote their sed-rate (sedimentation rate, a blood test) it's supposed to be an indicator of inflammation. However, when the lupus has been most active, the bottom drops out of mine.
Thanks for getting back to me, Ann. I have been praying for strength and wisdom for you. It took me a while to absorb all that I got hit with at first, but it does get easier. The most interesting twist is that each visit (I guess for a while- or maybe forever) you find out you have another one of the AI diseases. It's gotten to be a joke between my rheumie and me- the 2 for 1 office visit. I go in with 1 disease and come out with 2. I guess now it's: 5-for-1 haha.
You're sounding strong, are you okay? How's your support system doing with this?
Hangin' in there with ya'
Jeri
Ann S
03-04-2001, 07:51 PM
Jeri,
-*rheumatoid factor is not always positive in SLE. it is more indicative of Rheumatoid Arthritis if elevated. Normal value for RF is 0.15. (mine is less than 11 and I have SLE and other autoimmune diseases)-
The Dr. said my rheumatoid test was negative, so are you looking at the QUANTATATIVE RF, cause that's what my reading was. If you are, that doesn't sound like a negative to me.
-total protein by my list: normal is 6.0-8.0, your 8.5 is slightly above that- has to do with kidney function, I believe- but your urinalysis looked normal-
The Dr. said the tests showed it hasn't affected any of my organs, but that almost sounds borderline. Two yrs. ago when Mayo ran some tests, I had a slightly elevated bun/creatin test (I know that has to do with kidneys cause my husband was a kidney donor for his brother last April, & his creatin test still isn't within normal range yet). I had them do it again a few months back when I had my annual pap, and they said it was .8 which is within normal range. I don't know if I should be concerned or not?
-Ann, look for c-3 and c-4 quantitative and ch50 blood and c-reactive
protein.-
All I can find is the Co3 at 23.
-Those are all tests that show the dr each visit whether you are still in a flare, one is starting up or your lupus activity is down. it also indicates whether the kidneys are involved.I've seen a lot of folks quote their sed-rate (sedimentation rate, a blood test) it's supposed to be an indicator of inflammation. However, when the lupus has been most active, the bottom drops out of mine.-
Is there something else this sed rate is called cause I remember the rheumy saying he wanted to run one?
-Thanks for getting back to me, Ann. I have been praying for strength and wisdom for you. It took me a while to absorb all that I got hit with at first, but it does get easier. The most interesting twist is that each
visit (I guess for a while- or maybe forever) you find out you have another one of the AI diseases. It's gotten to be a joke between my
rheumie and me- the 2 for 1 office visit. I go in with 1 disease and come out with 2. I guess now it's: 5-for-1 haha.-
I love your outlook on this, I hope it's rubbing off on me! Did you get another dx lately again? I know about the Lupus, FM, Raynauds, & Sjogrens......what's the 5th? On jeannie's post, I got the impression that you considered the IBS an autoimmune disorder-I've never heard of that!
-You're sounding strong, are you okay? How's your support system doing with this?-
It's kind of an ironic situation with my husband. We both married each other for the wrong reasons & it hasn't been the best of marriages, but we were both raised with the 'old tapes' of marriage is forever. Believe it or not though, we did raise 2 special, wonderful kids...too many other people have told us that too, so it's not just a prejudiced parent talking. I guess that's one thing we both agreed was important and had a lot of bad experiences of what not to do. Anyway, my husband is being really helpful around the house & with showing concern. This is a big surprise for me. Maybe he always wanted to be needed and now he is. He hasn't shown any interest in reading the info I've found and I can't really share feelings too much, but then he's never been one for talking and sharing on a 'feelings' level. I'm satisfied for as much as he's been able to help. As for the kids, I think the oldest one is having a harder time understanding the prognosis & limits. Whether from lack of knowledge or avoidance, I'm not sure. Otherwise, I'm still having trouble with overdoing....like this week-end. Sure I can sit and rest, but then I don't feel like part of the family adventure anymore. I started taking the med for the Raynauds & I think it helps. No serious side effects that I've noticed yet. I'm having pain & numbness in my hands and wrists that wakes me too early in the a.m. I slept with wrist braces on the last 2 nights and it was a little better. I don't know if it is the Raynaud's, Carpal tunnel, RA, or Lupus causing it, but then, does it really matter which? I'm thinking about startine the plaquenel soon, but I'm not sure if I have to have my eyes checked first, or just periodically after I've been on it. Does that stuff cause a weight gain too? You should have never given me the opening cause you should know by now how I go on & on & on.
I wish Ready would write back and tell us how her appt. went. Maybe her mother won't allow her to talk to such crazy people on the internet any more.
So, it's your turn now....how are you feeling?
I really appreciate your prayers...I haven't started to deal with that yet. Take care, Ann
**
Jeri
03-04-2001, 11:04 PM
Hello Again-
this is dangerous: women who are having trouble with their brains corresponding about serious stuff. what a hoot!!!
I meant that the RF normal range was zero to 15; that puts yours in the normal or negative range accoording to my list. I've found from all I've read that for SLE patients, the RF is of no significance.
Re: BUN, yourdoc will keep a really close watch on that to be alerted to any kidney involvement- that's what's so wonderful about going thru this scare and all the tests and the aggravation now- is that they can catch stuff so early and ward off the damage. A lot of our "sisters" didn't get diagnosed for years and the destruction went unchecked during those years!
You wrote Co3. Did you mean C-3 quantitative? The rheumatologist will watch this go up and down- even in the normal range it can indicate an SLE flare if the numbers rise.
The "sed rate" may be listed as ESR or erythrocyte Sedimentation Rate.
One of the most difficult things that I still am dealing with is understanding that when you have an attack on- say your lungs and get pleurisy and you're really sick with it- it doesn't necessarily mean that your lungs are being damaged. I got "real protective" of my organs when I first read of all that could be destroyed. I am beginning to grasp this new way of looking at the flares- it'll take me a while, tho.
I had already been diagnosed with diabetes while I was waiting to get in to see the rheumatologist. I was surprised at all that were on that autoimmune list- including the IBS. I found the pamphlet, but the list is too long for me to type. I'm freaking a little cause I am transposing and misspelling like mad- and accurate hunt-and-peck is required in my job.hmmmmmmmmmmmm
Go to http://www.aarda.org for the list
I scheduled a eye exam when I knew that I would eventually go on plaquenil. I got in just after I started actually taking it so that the insurance covered it as medically necessary- not a routine eye exam. I haven't had any side effect that I can tell and it doesn't do anything with my weight. you go back for eye exams every 3-6 months(depending on your doctor- I have to go every 6 months)- and they are very thorough.
Feeling out-of-the loop I'll bet is typical. It's a trap, though, cause we can easily feel sorry for ourselves and that will REALLY distance us from family and activities. It takes some people a long time to catch on to this disease and some never will. It helps if your family understands and supports you, but they may not. If that's the case, you must take care of YOU. If not, you will cause yourself to be sick and miss out on special stuff that you wanted to do with the family. They'll adjust.
My husband and I also started our marriage on the wrong foot and for all the wrong reasons. We even separated 10 yrs ago for almost a year. It's been a slow growth, but when we took ourselves back before God and asked Him to heal our marriage and to bless our union, He did- was I ever amazed. We still have a lot of work to do and we're not very good at it, but we have the "old tapes" of marriage is forever and, Ann, that's the way it's supposed to be. The communication thing for us is like yours- not so good and could be a lot better- and maybe won't ever get real good cause we don't try hard enough to get out of our comfort zone to make it so. I rejoice that your husband is supportive & wants to help. Let your guard down a little and take a risk- you'll find some tenderness waiting for you. I almost blew it when I was diagnosed- I didn't want to tell my husband, cause he forgot I was supposed to get the lab results that day. I thought he didn't care and I was a mess. It actually took one of my girls chewing me out about being honest and open with him that broke down the walls. I was feeling like I had to beg for attention and he thought I din't want his love and concern. What a couple of goofs Paul and I are!! Believe me, there IS hope for all of us to grow in our marriage.
I about died laughing when you wrote that maybe Ready's mom wouldn't let her write to crazies like us! I want to hear from her and Jeannie and Oregon Girl and MMM and all the reast.
Come ON, gals!
I am doing pretty well. I have stareted to cut back on the prednisone from 20mg- I'm down to 16mg/day. I can feel the change, but I am banking on the methotrexate- that it'll fully kick in this week. I splurged a little on sugar 2 wks ago and within a week I could see the effect on my jawline and nexk- fat-looking. then my weight bumped up 6 pounds and I seemed to swell up all over. I was really down a few days- beating myself up for slipping when I knew what it would do. I'm over feeling sorry for myself now and back on track. the time to splurge a little IS NOT when you are on prednisone. Lesson learned/tee shirt earned.
I will continue to pray for you- and hopefully, soon, along with you. He IS our source of strength- sometimes we think we are supposed to handle this all ourselves. He tells us: "Come to me all who are weary and heavy-laden, and I will give you rest." Doesn't that sound like us? I know that this junk weighs me down and makes me weary- weary of being weary and weary of being sick and weary of worrying if I am a burden on others and on and on and on! We don't have to know what to say, just open your heart to Him and tell Him that you don't know what to say or that your can't speak to Him 'cause you are hurt, confused and angry with Him. He can take it, believe me.
Keeping you close
Jeri
Jeri
03-04-2001, 11:17 PM
PS- to keep us in one topic
thanks for IBS info, I'll pass it on to Emily.
The infectious disease stuff:
my rheumie said that flu was not-a-good-thing and to be sure to get flu shot and pneumonia shot.
she also said not to worry about coming in contact with contagious diseases. I freaked during my 2nd visit 'cause I work at a criminal justice center with Hep, TB and other noxious critters in the air.
Only when I went on methotrexate did she say I was at reduced immunity- and to just not deliberately expose myself ( as in volunteer to be their nurse) and to practice VERY good handwashing. All the stuff we had read prior to the doctor's appt said that I was at horrible risk of infections. I withdrew from the toddler's church role before I talked with my rheumatologist fully. However, my witdrawal was necessary, cause I couldn't physically care for them while I was so sick and still don't have the stamina to care for them safely.
Jeri
Ann S
03-05-2001, 08:55 PM
Jeri,
I went to that web site you posted where they listed 57 AI related disorders (it's the same one I prointed out a few weeks back)....IBS is not on there. Did I look in the right place?
That CO3 was the way it's listed. It was the closest thing I could find to C-3.
Also, I have "ESR,Westergren...8" Is that the sed rate?
Thanks for sharing about your family....a lot of it sounds very familiar. About the praying, I do. I just don't have the total faith that should go along with it. Yours seems to have brought you such acceptance and peace.
I'm still a bit wore out from the week-end, so I'm going to keep this short. Have to rest up for next week-end. My daughter has a pre-season softball tourney.
Did the typing go better today than last night?
Thanks very much for everything, Ann
Jeri
03-06-2001, 12:17 PM
Hello All!
Ann- I didn't check back to the aarda site(see what happens when I rely on my memory? haha)- just looked on their pamphlet they sent me. The IBS is listed as: crohn's disease and ulcerative colitis. You're looking in all the right places- I just screwed then up a bit!
I can't find CO3 or C03 anywhere in my list of labs.
The 8 on your sed rate (ESR)is within normal limits- apparently doesn't reflect in us what's going on. Yours and mine are are on the low end of normal and others with the same diagnosis say that theirs runs really high. (normal is 0-30 for women). Mine was 33 when I was first diagnosed and was still in a flare. It dropped to 2 and then 1 over 4 months and then went back up to 9 when the meds needed to be "upped" and went back to 2 from the methotrexate. A good example of how the doctors monitor those tests 'cause they can tell when "something's up" even if all we can say is: "I'm not feeling 100%."
I know what you mean about recovering from family. I overdo a bit every Sunday- but I have such fun with everyone around. I have learned to sneak away for a rest, tho, and usually con one of the grandaughters to lie down and watch a special program or movie with me in our big "nest" (as they call our bed.)
Ohhhhhhhhhhhhh tournaments! I am SO glad are kids are grown. When I was really healthy those days wore me out! Go VEEEEEEEEEEEERRRRRRRRRRYYYYYYYY easy on yourself. Well, But.... how can you? You either go or not! A mom's life :-) But ain't it grand anyway?
Praying's good, Ann. Soemtimes it takes a while for us to get our eyes focused upward- there are SO!!! many distractions. I have a beautiful friend who is about to leave us and go to Jesus- she has bone cancer. She has really helped me give this stuff up to Him without a struggle. She has taught me so much about trusting Him with everything- that it has become almost automatic to turn it over to Him when I hit a "bump" in this journey of ours. I just wanted to keep control and maintain so "say" over things- thinking that if I just dumped it on HIm I was being disrepectful or weak or something. Well, you know what? We ARE weak, we aren't in "control" like we think. We have all the choices to make- we are not puppets. However, we cannot handle alone all that the world buffets us with. He promises that if I will "yoke up" with Him that he'll ease the load. That partnership comes thru prayer, for me. That's what my friend, Mary, has taught me thru this. We are both absolutely certain that He put her in my path 3 yrs ago cause he knew I needed her wisdom and guidance. I think my faith has only grown by trusting Him with a little thing- then experiencing His promises being kept- then trust Him with another little thing, and.... It's not like testing Him- but just reaching out a very timid hand like you would to your Daddy when you are first learning to walk. He's grown my faith- it sure isn't anything I am doing 'cause I am the original skeptic and chicken with a very big ego and mouth-to-match. haha
Thanks for asking about work- I was flustered a lot last night until I just kinda shook myself and figured, what the heck if I make a mistake- between the officer and I we'll catch 'em. And believe me I made a LOT for some reason. You know, "It'll get better or it'll get worse-just wait". I always get the answer in time. That cracks me up (I'm easily amused) so I keep running that line thru my head when I sense that I am going to mess something up. It's helping to keep me lightened up.
have a gentle, treating-Ann-nice kind of day today and continue it on thru the week- you deserve it!
jeri
PS where are our other friends on this board?????? Helloooooooooooooooooo?
