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Luce
04-06-2009, 05:28 AM
Hi Guys and Gals

Over the last couple of days I've noticed my fingers have really swollen up and I've had to remove my rings which hurt a lot. My fingers generally feel really tight and the joints ache.

I was wondering if anyone knew what might be the cause? My ANCA showed a flare a couple of weeks ago even though I felt fine, and my meds were changed to 150mg cyclophosphamide and 30mg pred. I've been on these doses before without experiencing the swollen fingers.

Also any ideas on how I can reduce the swelling?

Sangye
04-06-2009, 05:51 AM
That's a chronic issue for me. My doc said it's just going to be part of life probably, since I'm not having a flare.

Is your ANCA a reliable indicator for you? Mine's not at all-- I keep getting better, but the ANCA climbs non-stop. We don't even order it anymore.

Luce
04-06-2009, 06:05 AM
Well I always thought my ANCA was reliable but it recently shot up from 23 to 176 and I didn't feel any different at all. As I've mentioned before I'm still only being seen by renal doctors who use my blood tests to dictate my treatment.

Obviously I will mention the swollen fingers at my next appt (14th April) and hopefully it might lead to me finally being referred to a rheumy.

Sangye
04-06-2009, 06:28 AM
Did your inflammatory marker increase, too (CRP, ESR/ Sed rate)? I can't imagine the ANCA alone would be used to dictate treatment.

Luce
04-06-2009, 06:58 AM
As I don't get to see my test results I have to ask my doctor for numbers and he doesn't often give me my ESR result. But I do know last time it was in the 70's, which I guess was high because he immediately increased my pred from 10mg to 30mg. It took him another couple of weeks to decide that I needed to switch back to cyclo from aza.

Sangye
04-06-2009, 07:02 AM
Unless you had some other inflammation (ie, not due to Wegs), the ESR of 70 is a pretty good sign of Wegs trouble. A more accurate marker of acute inflammation (like a Wegs flare) is the CRP. They usually order both.

germaine
04-06-2009, 12:14 PM
Not liikely, but maybe worth a suggestion, have you been eating salty food lately? I get swelling with that is I am not careful about my diet. Germaine

Doug
04-06-2009, 12:28 PM
Not liikely, but maybe worth a suggestion, have you been eating salty food lately? I get swelling with that is I am not careful about my diet. Germaine

My feet and legs swell if I don't get enough exercise or if I get too much. Peripheral neuralgia is the main problem I still deal with in remission, though. The swelling can be dealt with ng what I eat (I'm not a big salt user), through exercise, elevating my feet, watchimand taking my Furosimide, but the peripheral neuralgia, to some degree or other, seems to be WG's gift to me!

The worst part of the neuralgia is my right foot's tendancy to roll outward when I'm on uneven surfaces that are lower on my right side. Every time I think I'm past taking a tumble, my right foot reminds me I'm not! I fall when I am on the uneven surfaces if I don't make a conscious effort to mind my foot. If the numbness is worse on a given day than usual, I will take my cane with me when I go outside. If nothing else, people tend to open more doors for you and let you enter or exit building first when you are using acane! Haw!

Another effect of the neuralgia is my typing errors increase. I can live with that, but it's frustrating to strike more than one key at a time or strike a key but not notice you didn't strike hard enough to produce the desired letter on the screen. SpellCheck and Undo are my two favorite computer features! :)

coffeelover
04-06-2009, 12:49 PM
Luce,

I too have been experiencing swellingin my fingers. I thought it was just the weather related time of year? We in Minnesota are going from dryer weather to more of the Spring humidity.
Just a thought
Lisa

jola57
04-08-2009, 04:46 PM
Hi Luce, I had to increase my ring size from 7 to 11 in 1 year. Even now there are days where 11 is not enough. I lowered pred 2 days ago to 30 and no change in swelling of fingers as yet. Water retention is the probable culprit.
Your results sure sound like a major flareup. I get my blood test checked every 2 weeks. CRP, ESR, ANCA along with regular blood and urine morphology. I also have the results mailed to me, check with your doc or lab if that is a possibility.
Hope you get over this bump soon.

RCOSSIO
04-11-2009, 02:49 AM
In the US we have the right to get a copy of our results...not sure why the UK's social health system does not want to.

Heck its our numbers...but anyway...I also flare up with joint pains...like the rest of you it seems that WG is your new BFF (Best Friend Forever) or the awful in-law you can seem to get rid of. either way...

Thanks for salt intake...although I generally don't use much sodium in foods I will try to cut back on its consumption...especially when i order Endamame...great sushi appetizer:)

Jack
04-11-2009, 06:14 PM
In the US we have the right to get a copy of our results...not sure why the UK's social health system does not want to.
The system here in the UK gives you the right of access to ALL of your notes and records, but there is seldom an issue. My own GP and Specialists are more than happy to sit at discuss them at length.