PR3 values?

[Wegetarian]

Just had a session with my Doc who said that my PR3 values were 6.7 this March, and seemed a bit surprised that they had gone up as they were 6.3 last October (at which time she said they hadn't become negative yet).

We still discussed that she'd consult the rheumy if we could go a bit lower on the Pred. I'm taking 7.5 mg / day now and we planned to drop to 5mg in June. Also taking 25mg of MTX.

Edit: They were 26 when I was diagnosed in Aug 2013, so they were never like extremely high.

[KimH]

All these numbers make no sense to me. Last year my numbers were normal but my sinuses were rotting in my head. Now I feel really good but found out that my sinuses are worse according to CT scan. My last labs were almost normal. All the info was given to Dr Lebovics who told my rheumatologist to treat the patient and not the scan. So this is so confusing. How are you feeling?

[Wegetarian]

Oh I'm feeling real good. No complaints really. Some odd feelings, like occasional numbness of feet and hands. My eyesight also got worse, but it might have been the Pred.

I'm still not working full time as I get exhausted much easier than before. But I feel better each month.

[KimH]

Feeling real good and getting better each month is great! I hope the slightly elevated PR 3 is not significant and that you continue to feel better.

[Wegetarian]

Thanks, yeah - I haven't really worried about it. Will hear more on Tue when the doc should call me back. Kind of wondering whether its a good idea to go down on the meds though, in case that PR3 is of importance. Then again I think I was eating 30mg the last time they checked it and 7,5 now so I've come down quite a bit without the levels shooting through the roof (and as said I feel so much better too).

[windchime]

Maybe they should repeat the labs more frequently, especially if stepping your meds down. I know PR3 takes awhile to change, but perhaps a 3 month check would be reasonable. That way you could stay on top of the changes. just a thought. Glad you are feeling better. That's the important thing.

[woz]

Hi wegetarian, My PR3 was 60, when first diagnosed, it took 3 months to get down to 6.1, and another 2 months to get down to under 2. My eyes are always sore, at the end of the day, and are not as good as they used to be, when I was finally diagnosed, my eyes were red, I used to always wear sunglasses to protect my eyes, and used to freak people out by showing them my red eyes . Numbness in toes, and a little in my fingers, peripheral neuropathy is more than likely the problem. As long as you are continuously improving, that's great, and I agree with Cindy totally, get more frequent tests.

Regards Woz....

[MikeG-2012]

All these numbers make no sense to me. Last year my numbers were normal but my sinuses were rotting in my head. Now I feel really good but found out that my sinuses are worse according to CT scan. My last labs were almost normal. ...

Hey Kim, my blood work and numbers were perfect up to the point when my sinuses went nuclear back in August/September! By November, I finally convinced the docs that the wegs must be flaring up. ENT called it festering Wegeners in the sinuses. Rheumy wasn't convinced until the lung x-ray showed more nodules/holes/lesions.

So if you feel bad, and your sinuses are on the warpath, push the docs! I wish I had pushed more for the two months of MISERY I went through last fall. It has taken me so much longer to recover from this flare up than my original diagnosis too. Don't let a flare up get too far, before it starts to affect other organs.

[KimH]

Mike, last year when my sinuses were bad the doctor jumped right on it, surgery, change in meds. It all happened so fast last year. Even though the labs were good the pain started mid January, had several scopings, then CT which lead to immediate surgery to remove tumors. After all of that my numbers crept up. I was started on CTX. I had CT in June which showed stability in the sinuses. Between then and switching to RTX in January my numbers are a hair above normal, ESR 31, CEO 1.45, PR 3 equivocal. Finished RTX 2/7. On 10 of pred. I had a comparison CT 3/14 which showed increased inflammation and minor increase of bone deterioration. My Rhuemy faxed the report to Dr Lebovics while we were still on the phone. Dr Lebovics said that I will always have messed up sinuses so as long as I was feeling good and my inflammatory markers were going in the right direction don't worry about it. He said treat the patient not the scan.I have more labs on Tuesday and see my rheumatologist next week.

Thanks for your concern. I am good! My point in the thread is how insidious this disease is. How we can have good labs but still flare or have not perfect labs/scans and still be OK. This is where the weg specialist s are important in order to make sense of the great variety of Us. I hope the bump in Wegetarian' s PR 3 is nothing more than a variation in blood test reading. Keep getting better!