same dosage two weeks in row and number falling.....

Posey - did they do any detailed blood work...like dsDNA or anti-SM?

Yes, Sandi My rheumy nurse did so much blood work! pages and pages of tests. I am normal for those tests- will post more in the Lupus section.

Ok.

well off the prednisone for 2 weeks now today's number 263. going to monthly blood tests now. January i see the rheumatologist

the more protein i take the more the number goes up never fails.

John-- That is so great! And you are figuring out what works for you. I'm seeing how diet affects inflammation in my body- stiff joints, rheumatic symptoms- don't see the correlation with platelets in my case. Is it wonderful being off prednisone? Sometimes the withdrawal can last for a while but depends on how long you were on it.

can't say i had any withdrawal problems...started aug 27th 75mg stopped dec 12th. i'd say the taper was perfect really or maybe it wasn't the taper maybe i'm just lucky.
i'm glad i'm off it and the new hemo i've got said if the count goes back down we will try something other than prednisone if i want.... so important to find the right doctor. poseymint good luck to you.

That's great, John! One less thing.....

Keep us posted on the Rheumatologist.

thank you sandi for all your kind words and knowledge.

couldn't go to the Rheumatologist had to reschedule but latest count as of jan 25th 294.
been off prednisone for 6 weeks. funny thing is now i'm starting to worry my number is getting too high.

John - I always have the same worry. My counts have been in the 300's for years. I haven't had any problems though. You're not on any meds so there isn't much you can do about it. Just try not to worry.

well saw the Rheumatologist today she said based on the tests i have done so far i likely have lupus but still may not. so she ordered more blood tests. i would start plaquenil if those additional tests show i have lupus. she said the two main blood tests to indicate lupus i am negative for. personally i don't believe i have lupus but we will see.

Do you know what tests you had and which ones were ordered?

The two main antibody tests are dsDNA and Anti-Sm. Those are usually Lupus clinchers if you also have other criteria. If those are negative, a diagnosis isn't generally given, especially if there is a lack of physical symptoms.

tests i did...

igm..... 1.23

ANA screen positive
ribo protein 0.2
dna <1
chromatin... 6.3 high
ss-A52..... 6.6 high
ss-b...0.2

sm... 0.3
centromere-b....<0.2
ss-a60....>8 high
smrnp..... >8 high
rnp68....>8 high
rnp A ...... >8 high
scl-70 <0.2
jo-1 <0.2

she said i was negative for DNA and SM

just ordered tests......
Complete Blood Count Results are pending ...
Direct Antiglobulin Test Results are pending ...
Urinalysis
Urinalysis Chemical Results are pending ...
Creatinine/GFR Results are pending ...
Albumin Results are pending ...
Alkaline Phosphatase Results are pending ...
Alanine Aminotransferase Results are pending ...
Creatine Kinase Results are pending ...
Complement C3 Results are pending ...
Complement C4 Results are pending ...
Anti-Nuclear Antibodies Results are pending ...
Anti-ENA Screen Results are pending ...
DNA Double Strand Antibody Results are pending

Hmmm. You do have some odd elevated tests. Tough call. Most of the new tests ordered are the metabolic panel which are pretty standard and might not tell much. The C3 and C4 are pretty specific. Usually when they are not sure, they diagnose MCTD (Mixed Connective Tissue Disease) until something more specific shows up. Sometimes that never happens.

Good for you for getting copies!

personally i don't think i have it. i have a condition i won't bother to explain but it has to do with posture. that at times and this may sound weird can give you flu like symptoms among other crazy things. i've had it for 20 years... it's made me pass out once.
i think it's this problem that has messed with my immune system some and as a result i have these high levels but as you have said yourself they are odd. and for the definitive lupus tests i am negative. it appears as if i am positive for some autoimmune disease but i really don't have one. that's why i lack physical symptoms. just my theory.

You could be right. Do you have POTS?

no no POTS.

well some results are back (i can check my results online):

Complement C3 1.35 0.90-1.80 g/L

Complement C4 0.17 0.15-0.53 g/L

so c3 is good c4 is okay but on the low end of normal. so more evidence of not lupus.

blood platelet count is 253 which is a drop of 40 in 22 days. i thought it would be less because i wasn't eating as well and i think i only had 1 scoop of protein for a while also when it was 294 i think i was eating lots of blackberries. i'll test it again at the end of the month and make sure i have to 2 scoops of protein and eat well and see what the number is .

more results have come in.....


Extractable Nuclear Antibody
POSITIVE(says i'm positive)

The ENA test screens for the presence of antibodies to SS-A, SS-B, RNP, Sm, Scl-70, and Jo-1.

Tested by a multiplex flow immunoassay (BioPlex) method.
Jo-1 Extractable Nuclear Antibody i'm <0.2 normal <1.0 AI
Ribonucleoprotein Extractable Nuclear Antibody
i'm >8.0 normal <1.0 AI

SCL-70 Extractable Nuclear Antibody
i'm <0.2 normal <1.0 AI
Smith Extractable Nuclear Antigen
i'm 0.6 normal <1.0 AI
Sjogrens Syndrome-A Extractable Nuclear Antibody
i'm >8.0 normal <1.0 AI

Sjogrens Syndrome-B Extractable Nuclear Antibody
i'm 0.3 normal <1.0 AI
DNA Double Strand Antibody
i'm <1 normal <5 IU/mL

Well that's all good news! Do you know what the ANA titer is? They will usually flag it as positive even if it's really low and doesn't mean anything. 1:20 is normal, but I've seen 1:80 flagged as positive even though people with Lupus will generally have 1:320, 1:640 or 1:1280 which are high titers.

I'm glad the tests are good. My C3 and C4 were abnormal when I was diagnosed.

the Anti-Nuclear Antibodies test results are pending i'll look to see if there is any ANA titer value when they come back.
more tests are in....

Direct Antiglobulin Test, Polyspecific
POSITIVE
The patient's red cells are coated with IgG.
The direct Antiglobulin test is weakly positive.

well looks like i have lupus

Nuclear Antibody Titre i have HI = OR >1:640 normal < 1:80
Nuclear Antibody Pattern Speckled pattern

Yeah, that's high, but doesn't determine Lupus. It's one factor. The ANA can also be high with other autoimmune disorders.

You're a tough nut to crack, John.

yeah my aunt has dermatomysositis.

after i hear what this doctor has to say about the results i will go to another Rheumatologist for a second opinion i already have the date for the second doctor.still could be this crazy posture problem i have.

keep in mind it's because i switched to a hemo that specializes in ITP that he said i think you have lupus that i'm even getting these tests. i consider myself lucky i switched.

It's good that you have a thorough Hemo, but he's not qualified to make that diagnosis. I'm glad you have a second opinion coming up. Once something is put in your medical records, it's hard to get it out. That diagnosis will affect health and life insurance too, so make sure it's correct.

My mom had dementia and told the ER staff about a year ago that she was allergic to latex. She wasn't. I could not get it out of her records no matter how hard I tried. It followed her wherever she went. She also said she was allergic to propane so....

sorry for the confusion..... my hemo thought i had lupus and sent me to a Rheumatologist who said he things i most likely do but he is not sure and wanted me to do these extra tests which i have just posted. i go back to him in a couple of months and then he will tell me whether i have in his opinion lupus. I also have another Rheumatologist appiontment coming up and i will see what his opinion is also. hope that clears it up.

I understood you. I get that your Hemo only thought you had Lupus and didn't actually make the diagnosis. It stinks that you have to wait months to hear what the first Rheumatologist thinks. My Rheumatologist went on maternity leave and I had to wait a whole year to see one in the practice. That is horrible considering that Lupus patients should be seen every 4 to 6 months. I tried to get an appointment three times and couldn't, then after a year they called me and said they wouldn't fill any more scripts until I came in. It wasn't my fault!

i called the Rheumatologist today and said all the results have come in lets move up the appointment . they will get back to me. if they can't change the appointment i'll end up seeing the 2nd Rheumatologist first and i'll just hand him the results of the tests i did with the first Rheumatologist. if they're not all booked up and could have made an earlier appointment like in march say 3rd week. instead of MAY. then i will consider leaving that doctor. the tests results are all back it is feb. why would they make an appointment for May??? seems like we are wasting time. I'm prepared to go to several other Rheumatologists if need be to find a good fit for me.

An interesting thing.... my hemo had me come in a week before my appointment and had me do some blood tests instead of waiting until my appointment to then tell me we need to do these blood tests and after comeback weeks or months later and i will discuss the results. the Rheumatologist could and should have done the same thing.

Doctors should do it that way (order the blood work first). I usually end up interpreting my own results since I can access them online. I try to have faith that they will call if something is wrong. I've had eight or nine Rheumatologists by this point because they all eventually drop the ball. Before I was diagnosed, I was seeing a Rheumatologist for quarterly monitoring because I'd had elevated results. I had labs done each time and at the next appointment months later, he'd tell me that I didn't have Lupus but we'd continue to monitor. After a year of that, I got a call one day at work that he was diagnosing me. My dsDNA came back elevated and I had Anticardiolipin Antibodies. That was the clincher. I'd had physical symptoms and elevated ANA, abnormal C3 and C4, elevated SED rate, and ITP. It stunk that I found out with a phone call, but better than waiting three months.

just noticed your count 443K that is high,