SED Rate 39, ANA Positive

• By mrobert7
• Reply 121706
• August 21, 2008 at 7:34 am
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I have experienced the elevated ESR and ANA many times. Sometimes their positive, sometimes their not. For many years, I was told I had SLE. (Lupus) My Pulmonologist told me that the hide and seek of this disease causes it to make your labs all out of whack.

I would be a little upset that the Pathology report read highly suggestive. What is that? It either is or it isn't. I have worked in Healthcare in many capacities for 15 years and have a very good friend who is a Pathologist. She attended to my surgeries and reviewed my specimens etc. I do not believe that "highly suggestive" is a good enough answer.

I had a bronchoscopy before the mediastinoscopy and unfortunatley, they weren't able to get a big enough sample with the biopsy, so they put on the report that it was inconclusive due to a scant specimen. I am wondering if your surgeon didn't provide them with a big enough sample?

Melissa

• By lwkmd1
• Reply 123443
• August 24, 2008 at 11:53 am
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The diagnosis of sarcoid is confirmed by the biospy findings only. You need a pathologist worth teir salt to review your path slides and confirm the diagnosis.

• By Sarcrazy
• Reply 123492
• August 24, 2008 at 1:03 pm
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I agree with mrobert7 and Iwkmd1 re: poor answers from surg/path. Also had broncho/mediastinoscopy and tissue positive for granuloma of sarcoid along with pos blood work (ACE). It should be positive or negative. Suggestions are worthless. They know so little.

• By Geru008
• Reply 292896
• February 19, 2009 at 1:45 am
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Hi, Please be aware that many Drs. are completely ignorant about Sarcoid. One Dr. tried to give me chemo pills.I am a male and my sed rate should be 0-22, but, my test came back 43.I have had active Sarcoid symtoms for over 10 years and I take prednisone 10 mg per day, obviously, the sarcoid is active regardless, and my dose will probably be increased. Ck. a Dr. or medical services referall web site to find a REAL SARCOIDOSIS Dr.....Good Luck

• By sculptr
• Reply 294260 · In reply to 292896 by Geru008
• February 20, 2009 at 9:08 am
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Geru008, was the chemo the doctor tried to give you called Methotrexate? If so, that is a standard treatment for Sarc - I'm on it myself, as are many others here. Methotrexate is chemo, but we take lower doses than used for cancer.

Respectfully, Sculptr

• By Geru008
• Reply 294813 · In reply to 294260 by sculptr
• February 20, 2009 at 5:22 pm
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No, it was an actual pill medication that only people on chemo take, I just recently threw them away because my new Dr.after him said they were dangerous and not a treatment for Sarcoid. The old Dr. swore that he believed Sarcoid was a form of Cancer and needed to be trated as cancer.What aNUT!

• By sculptr
• Reply 294827 · In reply to 294813 by Geru008
• February 20, 2009 at 5:32 pm
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Wow. Well, that just reinforces the idea that we need to educate ourselves as much as possible, especially where Sarc is concerned. I'm glad you knew enough to stand up for yourself and check it out!

• By Geru008
• Reply 294947
• February 20, 2009 at 7:39 pm
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Yeah, I just got home from having a chest CT scan at the medical facility. My pulmonary doc wants to see if the scar tissue is increasing.I'm pretty sure between now and my breathing test he will increase my prednisone dose. I just need to re-focus on my plan. I had my head on straight , then got lulled into a false sense for a while.I have been so busy writing three novels at once, I kind of zoned out....Ill be ok. I have a lot of support, wife of 36 years, three daughters and 2 grandkids, not to mention sibs.....Geru

• By Tawney
• Reply 295144 · In reply to 121706 by mrobert7
• February 21, 2009 at 12:03 am
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Hi Vernonmusic and Melissa

Do you know what titres your ANA levels are? Melissa do you know if yours always has the same pattern each test?

• By 42many
• Reply 295804
• February 21, 2009 at 5:03 pm
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Tawney and your research...good job. My titres were histone (mostly) but also positive for others and thus my mis or co diagnosis of SLE/MCTD...what are yours?

• By Tawney
• Reply 296005
• February 21, 2009 at 9:09 pm
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Hi 42many

Here in Australia, until just a few years ago 40 titre was considered borderline positive for ANA. Round the time my arthritis arrived 4 years ago, the reference was bumped up to 80 titre for borderline positive. My GP at the time mustn't have been aware of the change because when my ANA came back as 40 titre she thought that the ANA and arthritis might be suggestive of lupus (as I had wide and varied other symptoms too). Since then, my ANA has never budged from 40. Depending on the lab, the pattern changes but most usually is homogeneous, which is the pattern associated with lupus and mixed tissue connective disease. I think you have to have a clearly positive ANA before they'll do the histone antibodies test so I've never had that done.
So doctors consider my ANA negative but I keep it in the back of my mind that it's only a hair's breadth away from being positive. Seems to be my story...always just a scrape under being clinically significant.
I was, however, interested to note that the hospital lab my nice neuro uses still uses the 0 to 39 reference level and not the revamped 80. Must ask him if that's for any reason other than they've never updated their paperwork.

• By Tawney
• Reply 323867 · In reply to 295804 by 42many
• March 19, 2009 at 3:19 am
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42many, how high was your ANA before they did the histone/extra tests? After saying last month that my ANA has never budged from 40, it just came back at 160 speckled. Without an immunologist anymore, I don't know if that means anything significant or not.

• By 42many
• Reply 324374 · In reply to 323867 by Tawney
• March 19, 2009 at 2:08 pm
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Okay. Back in 2003, after losing a lot of hair and having this awful rash that noone could identify or prescribe an ointment to ease...I demanded my first ANA test (my ob/gyn drew the short straw that day).
My labia had just been punch biopsied for possible VIN (precancer) due to odd look and sensitivity. (One guess what the diagnosis is now...treatment is premarin cream and betamethasone cream)
SO then:
1:1280 Homogeneous - DNA (ds, ss) High titers =SLE

Speckled are associated with: SLE, MCTD, Scleroderma, Sjogrens (Sm, RNP, SCL-70, SS-A/SS-B
etc...there are several markers that you should get cjecked when you demand a full panel work up...which I hope is soon.

My sed rate was 22 (normal range is 0-22)
A negative at that lab at that time is under 40.
My most recent came back as:
ANA9-Cenrtromere 32 (0-100 range)
SSDNA 25 (0-99 range)
DS-DNA 8 (0-40 range)
SM 16 (0-89 range)
RNPSM 1 (0-83 range)
SSA 43 (0-91 range)
SSB 32 (0-73 range)
Histone 31 (0-96 range)
SCL70 4 (0-32 range)

So to this day I have not been told I DO NOT have and autoimmune in ADDITION to sarcoid but I have not been told that I DO, either.
Now how much fun is that?
SSA, SSB,( Histone, speckled, homgeneous) are all associated with lupus. So is the heart trouble I just found by way of MRI I'd been asking about for three months. After doing all of theirs (that were normal) I finally got mine and it shows some trouble brewing and when I google the report key words I keep getting lupus in my matches?

ANA Screen
ANA-A 4 (0-10 range)
ANA-B 5 (0-10 range)
high VITAD 61.8 (19.1-57.6 range) dead winter here.
high ACE 77 (4-60 range)

• By IreneMarie
• Reply 324640
• March 19, 2009 at 6:44 pm
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Hi 42Many,

I have mitral valve disease and plaque build up but the A-fib was not a part of all that. It needed to be corrected with ablation after failing all meds. My Rheumie feels that since the Mini Maze cure for A-fib worked, sarcoid was the causitive factor. Who knows?
I think subjective as well as objective data is necessary to define sarcoid. If a biopsy is not exactly in the right place it will never be difinitive. Labs are different every day so it's a trend of results, in view of everything else, which is the better indicator.

Have you heard of lung lavage for cell specimens instead of biopsy?

• By IreneMarie
• Reply 324656
• March 19, 2009 at 6:58 pm
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A Brittish nurse told me about the Kviem test. The summery is lenghty but interesting - let me know if you have heard of it. Here goes.

Bradstreet CM, Dighero MW, Mitchell DN.
Results of an analysis are presented of the salient clinical, pathological, and Kveim-test data of importance in the diagnostic assessment of 839 patients in whom a Kveim test was made as part of their routine clinical investigation. From these analyses the following significant observations can be made: 1) The age distribution and negative tuberculin results in patients with sarcoidosis were in keeping with the diagnosis of sarcoidosis, whereas for those in whom a diagnosis other than sarcoidosis was made, they were not. 2) The findings of 64% positive tuberculin results in cases of confirmed sarcoidosis of less than 2 yr known duration and only 39% in those of greater than 2 yr duration are closely similar to those found in international Kveim-test studies reported by Siltzbach in 1966 and Hurley and Bartholomeusz in 1971. 3) The use of the material was helpful in confirming a diagnosis of sarcoidosis in patients with extrathoracic lesions, for positive results were obtained in 33% of those with uveitis 40% of those with erythema nodosum only (findings which are in keeping with those of other studies in the United Kingdom, and 60% among 27 patients presenting with lesions in various sites, including 2 with cranial nerve lesions and one with cardiac arrhythmia. 4) We found only 2 positive reactions (less than 1%) among 221 patients in whom a diagnosis other than sarcoidosis was reached. Clearly these findings show that the Kveim test material. Lots 19 and 22, of spleen K 12 exhibited not only a high degree of reactivity and selectivity for sarcoidosis, but also that they were of considerable practical value as an aid to diagnosis. The finding of only 2(0.9%) positive Kveim tests among 221 patients with diseases other than sarcoidosis is of special interest. Of the different diseases that were ultimately diagnosed only 6 patients tested had lymphoma, only 11 had either pulmonary or lymphatic tuberculosis, and only one had Crohn's disease. Although these numbers are small, it is relevant to compare the Kveim-test data of Lots 19 and 22 of K 12 with those of Lot 5 and of Lot 14 of the same spleen. In validation studies Lot 5 yielded the expected proportion of positive reactions at different stages of sarcoidosis and a negligible proportion of positive reactions with active or quiescent pulmonary tuberculosis or among healthy subjects. However, in subsequent studies in special groups of patients, those with Crohn's disease, ulcerative colitis, or lymphatic tuberculosis, a proportion of the Kveim tests performed with these lots were positive. Within the context of the present field study, the results of these analyses confirm that the last lots of K 12 material exhibited a high degree of selectivity for sarcoidosis and that they emphasize again the practical value of the Kveim tests with suspensions that have undergone careful validation.

• By Tawney
• Reply 324733 · In reply to 324374 by 42many
• March 19, 2009 at 8:14 pm
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Thank you, 42many. I was kind of surprised the ANA had increased any, although mine's still low compared to yours. Guess it means I need to broaden my horizons again re possible diagnoses (is that the plural of diagnosis?). Two steps forward, twenty backward!
Strangely enough, I got a rash on my chin mid 2003 and was told it was rosacea. That was when I had my first major hair fallout a couple of months later. Never could figure out whether the rash was connected to the hair falling out or the antibiotics I was given.
Don't know whether the increase in ANA is a result of ditching my medications or would have happened away. Tried to clarify things and they just got murkier!
Thanks again!

• By 42many
• Reply 324919 · In reply to 324640 by IreneMarie
• March 19, 2009 at 11:09 pm
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I just got done asking for BAL from my second pulm. He said it has no prognostic value and would be another expensive and uncomfortable test. He also said prednisone was better for arthritic symptoms than lung...
I just finished reading a paper that states the type of cells do have good prognostic value.
My MRI shows LVESVI is about twice normal and the LVEF is borderline. My echo showed a leaky valve. The first cardio didn't think it relevant but I just read that low EF can cause bleeds...
I wore the King of Hearts for a month and only had PVC's well within normal. Same for stress test, etc.
I don't think I have an electrical problem yet but having inflammation constantly may be taking a toll on my heart...elevated ACE...and I've been using Benicar at high doses for a couple months prior to test. ARB's may have improved my test results.
Do you have a cardio/converter implanted?

• By IreneMarie
• Reply 324962
• March 19, 2009 at 11:59 pm
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The Mini Maze ablation was a success, right up to the aortic collar, so I don't need the converter. Don't even need Coumadin any more - just daily ASA. Thank God

• By cariel71
• Reply 510097
• August 21, 2009 at 2:02 pm
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Hi, Vernonmusic.
My SED rate was over 100 at one time two years ago. My ANA was negative. The tissue samples retrieve from my lungs was CONFIRMED sarcoidosis. Push harder, we are our own best advocates. Unfortunately, the doctors know VERY LITTLE about sarcoidosis. I'd venture a bet that we on the site are more informed than most of the physicians we see when it comes to sarc. Go with your gut. I wouldn't take Prednisone or Imuran or Metho unless I knew for sure I had those granulomas and I definately wouldn't go without treatment either. Good luck to you!