?Limited Wegeners

[eileenv]

Just thought i would let you know i received a copy of the urgent referal letter my rheumy sent to the ent specialist, in which he is currently ? asking if i have limited wegeners as i have a clear xray and kidney funtion is ok but i do have a trace of blood in my urine. A mistake he has made on the referal is saying my RF is neg when in fact it was positive as i have a copy of it from him!!. He also say that i have had a ANCA test positive twice with a peri nucuear pattern with positive pr3 antibodies. Does anybody else have a positive RF?

[Lola]

RF - Rheumatoid Factor.
When I first got sick in 1990 my RF was very high, so my GP diagnosed rheumatoid arthritis.

I think a positive RF indicates inflammation somewhere in the body.

[JanW]

Yes, I had a positive RF that increased between the time I believe I first started flaring and six months later. Very common to have this with postiive c-ANCA and P3. You may also see a positive SED rate (also called ESR) and positive C-reactive protein.

[Sangye]

RF is not a very useful blood test--too many false negatives and positives. A history of malaria will often cause a (+) RF, for example.

I haven't heard that it indicates inflammation, though.

Many people with autoimmune diseases either have a (+) RF in the beginning or they develop one. No one knows why. Unless you have signs/symptoms of RA, it's nothing to worry about.

My RF was (-) but became (+) since I was dx'ed with Wegs.

[Jack]

It's that expression "Limited Wegener's" again. I really don't agree with it. As far as I'm concerned everybody's case is different and some are affected more than others, but things can change very quickly!

When does Limited Wegener's become Wegener's Proper? Kidney involvement? Lungs? I pity the person that has every symptom on the list!

Gripe over!

[JanW]

Kidney involvment, as I understand it, Jack. I was told by my rheumy that it goes from "limited" to "wegeners" when the disease has affected the kidneys (even if nothing else is affected). It really is a "term of art" that doctors use, and mine certainly never tried to say that I couldn't go from "limited WG" to "WG" at the drop of a hat. That's why I have bi-monthly urinalysis.

[moyan]

I have asked lab attendant and my pg if I should have urineanalysis and they both say nah. Kidney specialist never mentioned it. I have 50% kidney efficiency, kreatinine is stabilized at that and on my own initiative have bloodwork every 2 weeks, just in case kidneys act up since I am tapering pred. I also have swollen feet, joint pain, blocked ear, can walk 30 meter and then my breath is used so I have to get new by sitting. Is this a case of full Wegener's? Whatever, my approach is to enjoy each and every day. Read once about a little girl with cancer who every day sat with her mother on the bed saying "what was good about today". Some days I use that technique!!

[MyerscoughClan]

My daughter was diagnosed with "Limited WG" because it was only in her sinus area, the minute it moved to her lungs they said she had full blown WG, but I'm with you Jack, WG is WG and less of it doesn't make it any better.

[Sangye]

When I was first dx'ed, my lungs were hemorrhaging, I needed a blood transfusion, 1,000 mg IV solumedrol and oxygen. I nearly died. They called it limited Wegs. At the time I wondered what "unlimited" Wegs would do.

[eileenv]

Thank you all for your replies, yes i knew that RF factor dosen't have to mean you have RA the rheumy told me that himself, yes i have a high ESr
crp and, ie imflamation. What makes me laugh if when he said it was neg and it was him exspaining to me about a positive result. I shall tell the ent specialist when i see him, still wondering what he meant by when he said did i smoke or if i ever did?.