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signifigance of positive anti ribosmal p and anti chromatin ?


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Old 02-12-2017, 09:27 AM   #1
undx
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signifigance of positive anti ribosmal p and anti chromatin ?

I have postive anti chromatin and anti ribosmal p antibodies. I have many symptoms. However, the rheumatologist had never heard of them and said they are not important antibodies like DS DNA, SM, SSA, SSB and as I was negative for those, I was told no SLE. However, everything I have read says they are only found in SLE :/ Is anyone else postive for these and if so wat has your rheumatologist said about them ? Or has anyone heard about the usefullness of these antibodies from a dr ? Thanks !

 
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Old 02-12-2017, 01:44 PM   #2
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Hi and welcome. Like you, I've read the exact opposite about anti-ribosomal P, that it's strongly suggestive of lupus. If you've read the diagnostic criteria*, no, it isn't listed, but I think the reason is that it's seen far less commonly than the AB's your rheum cited., Problem is, if the diagnostic criteria were to include EVERYTHING, it would be pages long and useless to doctors and patients.

*For the diagnostic criteria, look in the "sticky posts" (permanent info posts) located above the user threads.

The fact that your rheum has never heard of anti-ribosomal P is dismaying! You could find some info on your own and present it to him, or find another rheum. Either way, looks like YOU must be the one to break the deadlock...

No rheum has discussed this AB with me. But I had a lower-odds AB, too, and a lower-odds rash, and very low-odds blood labs: my ANA stayed negative but anti-Ro was positive. I saw many doctors (rheums, derms, etc.) who all fixated on my negative ANA and the fact that my rash wasn't malar or discoid*, then took myself to a teaching hospital rheum. (*I learned later there are more than a dozen lupus-specific rashes.) Are there teaching hospitals near you? Looking forward to hearing more.

 
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Old 02-12-2017, 03:05 PM   #3
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Thank you for your post, very informative and very helpfull I was a little surprised that the rheum. had never heard of them, after all that is their field. The rheum. diagnosed me with fibro and told me that I needed to take aspirin.
I have:
- photosensitivty - diagnosed as photodermatis
-livedo reticularis
-Raynauds
-discoid rash(treated with steroid cream- so biposy is not durable)
- facial rash- I say it is malar...
- body rash
- fatigue
- oral sores- has gotten infected and required steroids and antibiotics
- joint pain- with redness
-ANA >160
-occasional leukopenia (not severe)

I'm getting a 2nd opinoin. I read reviews online to hopefully get someone good. the teaching hospital is a great idea, but I'm not near one.

I showed pics last time on my phone. This time, I'm thinking of making a bulleted type document of all my symptoms and medical history with the most relvant lab work so it is all cohesive. I heard some people do symptom diaries. I don't plan on going in letting them know I think it is SLE to not be a self diagnoser. Do u have any suggestions for me ? Any input would be greatly appreciated.

Last edited by undx; 03-12-2017 at 07:48 AM.

 
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Old 02-12-2017, 05:34 PM   #4
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

undx, I created such a list for rheum #2, because his staff requested it. I used sentence fragments & bullets (doctors love brevity). Cited each symptom only once, arranged chronologically by start date, then appended brief descriptive comments, duration, frequency, etc. I kept it all to < 1 page.

Your idea of adding relevant pics makes sense. You could cross-reference them as attachments. If you've seen derms for your rashes, you could collect the test results. Also attach blood labs that might be "interesting".

Speaking of blood labs, have you had any other anomalies other than low WBC (leukopenia)? Do your doctors order urinalysis?

I'm curious: what does your "photodermatitis" look & feel like? Is it the same rash that recurs? How long does it last? Etc. There's a "sticky" on rashes you might want to read, maybe something will pop out. (My rash was SCLE, the annular form, it was quite WEIRD. It was just red non-itchy bumps on/off for 4 years, then in the next 4 years, those red bumps reappeared but "morphed" into red circles with clear centers, then expanded further, losing circularity. If your rashes do anything bizarre like that, definitely describe it.)

Biopsy may actually be do-able. Because my labs didn't create certainty, a dermatopathologist did the Lupus Band Test, which is goes beyond a single-step biopsy. In the 2nd step, special stains are applied that look for the deposition of "immune junk" between the dermal & epidermal layers of skin. Why? Because this deposition is unique to lupus. If all 5 stains create linear "bands", it's SLE to a certainty of > 99%. But the LBT is a real specialty test that I suspect only a few derms even do---and it's probably only needed in a small number of cases.

As for other ideas, you could borrow library books on lupus, to scan sections that seem pertinent. The "sticky posts" contain some suggestions.

When I saw my rheum #2, I didn't let on what I thought I had, but I had printouts in my handbag, in case he asked what I suspected---which he did, when my appt. was finished. Anyhow, stay in touch, OK? If we can help you de-bug your list or kick around more questions, or whatever, we will! Bye for now.

 
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Old 02-12-2017, 06:03 PM   #5
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Thanks for ur help, great insight on the symptom list My differential on the wbc sometimes comes back slighlty low too. I get a pink rash on my body when out in the sun. I have pics of me at the beach to show the dr. If in sun for very long time, I also get hives. I don't get urinalysis regulary, but my kidney fxn on labs is good. My biggest worry is being told again that I have non specific findings and lots of helathy people have + ANA that makes me feel like a hypochondriac, which I completly understand but I have symptoms

Did u have organ damage or other lab abonormalities at ur diagnosis ?

Last edited by undx; 02-12-2017 at 06:17 PM.

 
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Old 02-13-2017, 04:34 AM   #6
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Good morning. My lifetime medical history read like a textbook for lupus, per my rheum. (Aside: there's another sticky you could read. In the one with criteria, scroll down until you see the so-called "alternative criteria". These are issues that occur earlier in life in people who later develop lupus. I matched almost all.) In those many years, I also had some severe bouts of pneumonia.

I'd had joint pain & pain along long bones of arms & legs, fatigue, hair loss, and borderline WBC on/off since teenage years; plus migraine-like headaches and ferocious GI problems for 20 years (tests had ruled out Ulcerative Colitis & the like); plus SCLE rash (upper arms & back & upper thighs) for 8 years. At time of dx, anti-Ro (SS-A), low WBC, low Vit D, and grossly positive Lupus Band Test on 3 different skin punches taken over several years. No organ damage. While this translates to "milder side" of SLE, it was enough for dx and treatment (Plaquenil), also to call for strict sun avoidance.

There's also a "fuzzy" dx called Undifferentiated Connective Tissue Disease (UCTD) that could get you treatment & follow-up. It's used when a patiently clearly has a CTD yet hasn't fulfilled enough of the various specific criteria.

Another thing to consider is that once you've met a lupus criterion, it ought to be considered permanently checked off, as if ticked off in indelible ink. So your past leukopenia (low WBC) should count. Maybe ANA (if it's deemed high enough to count). Maybe your oral ulcerations. Maybe photosensitivity. Maybe your discoid rash and malar rash (if confirmed by a doctor who knows these rash types). In my dumb patient's mind, even though your labs aren't screaming out the best-known findings, what you have had is suspicious!

I think you need an "artiste". As you work on your reboot, drop a line when you want to talk---we're always here. Thinking of you. Sending hugs!

 
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Old 02-13-2017, 09:00 AM   #7
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Certainly, you are not a "dumb patient." From the rheumatologist dr's I have meet u seem to know more about SLE than they do. I'm a health major, so I do have some very basic knowledge about lab interpretation, which makes me think that soemthing is not right. My ANA is above 160 on all occasions tested, but not in the thousands.

I do not need a diangosis of SLE, I have no problem with the arthritis diagnosis or MCTD (even though I don't have +rnp) while waiting for confirmation for the SLE as long as my symptoms are being treated.
Thanks again, for all your help. I hope ur GI issues have imporved

Last edited by undx; 02-27-2017 at 03:29 PM.

 
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Old 02-13-2017, 09:46 AM   #8
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

MCTD isn't dx'ed unless anti-RNP is positive & is the sole ANA subtype found (meaning all other CTD AB's are tested & found negative). In contrast, UCTD doesn't "require" any specific AB's, so there's also that possibility, I'd think...

I really do recommend borrowing library books. As a health major, you'll zone quickly on what's most important to you. I'm not joking when I say that a single sentence in one propelled me to a new rheum, the one who "got it".

My GI issues resolved quickly once I started Plaquenil. (Yay!)

BTW, one of my hardcover authors says anti-ribosomal P is seen in 20% of patients with known SLE. Later he says "Ribosomal P has a weak association with psychotic behavior and is found mostly in lupus patients" [emphasis mine]. I haven't seen the other condition(s) in which it occasionally pops up; but if I do, I'll post same. Sending my best!

 
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Old 02-13-2017, 11:17 AM   #9
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Re: signifigance of positive anti ribosmal p and anti chromatin ?

Thanks again. I always thought UCTD and MCTD were the same. I have the book by wallace and like it. I will look at some other ones.

 
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