Fatigue?

[mrtmeo]

I was in remission without drug panels, lasted four years however the fatigue never went away. Some days worse than others, have naps most days just to have some evening time with Deb. I'm with Nikki on this one I hate fatigue also. Oh, I am back on Prednisone, CRP and PR3 were slowly rising, started at 5mg now at 1mg and will probably stay there until Rheumy in March.
Dale

Hi Dale,
When you were in remission were u anca neg and normal crp and sed rate?

[Pete]

That's awesome, Pete!
Are you still on prednisone, and if so, how much? (you probably have said this on many threads, but I don't remember, sorry)

I'm at 3 mg/day. I'm planning to discuss getting off both mtx and Pred when I see Dr Villa Forte in April.

[kaysee]

Dr has not told me I am in remission, but my latest tests done on 1-19 were within normal ranges except for creatinine which was 1.61. The ANCA tests were all negative as well. So I am happy with those results. I am on 5 mg pred every other day and will soon decrease to 5 mg every three days with hopes to stop it entirely withing a few months. Yet I have fatigue everyday and no motivation to do much. I am dealing with constant pain in my left hip, groin and thigh every step I take. I walk with a cane as my leg sometimes give out. That is frustrating me and may be leading to some depression. In the past I have always been a pretty active person and now I can not do my housework.

[mrtmeo]

Dr has not told me I am in remission, but my latest tests done on 1-19 were within normal ranges except for creatinine which was 1.61. The ANCA tests were all negative as well. So I am happy with those results. I am on 5 mg pred every other day and will soon decrease to 5 mg every three days with hopes to stop it entirely withing a few months. Yet I have fatigue everyday and no motivation to do much. I am dealing with constant pain in my left hip, groin and thigh every step I take. I walk with a cane as my leg sometimes give out. That is frustrating me and may be leading to some depression. In the past I have always been a pretty active person and now I can not do my housework.

Hi Karen,
I have heard from a friend with the vasculitis foundation that said the fatigue and body pains take a year or more to go away once in remission for some. Neuropathy can take longer. Once the vasculitis activity has been stopped, they body has to heal from all the damage.
Hope you feel better soon.

Did your dr say when he would know that u were in remission?

[renidrag]

Normal CRP, SED rate, PR3, creatnine all normal. I only had one Anca test done back in 09. Was never told that it was positive or negative. After learning more about this disease, I am of the impression that Anca can not or maybe should not be used as a definite marker. There are a lot of people here that never had a positive Anca and still suffered greatly from Wegs.
Dale

[mrtmeo]

Normal CRP, SED rate, PR3, creatnine all normal. I only had one Anca test done back in 09. Was never told that it was positive or negative. After learning more about this disease, I am of the impression that Anca can not or maybe should not be used as a definite marker. There are a lot of people here that never had a positive Anca and still suffered greatly from Wegs.
Dale

Yes, many drs do not follow ANCA's for remission, but my mom still has blood in her urine, high inflammation factors and anca pos, so she is not in any way in remission. To allow her to keep going could result in loss of her kidneys. If her kidneys weren't involved, I wouldn't be so impatient.

[kaysee]

Blake,
My Dr did not say when he would determine if I am in remission. I assumed he would determine that after he reads the lab results done on 1-19. I don't see him again until early April. Thanks for the information about fatigue and body pains- taking up to a year to recover. The physical therapy has helped somewhat with the pain, but not fast enough to satisfy me. I just keep at it every day.

As for ANCA tests, I do know they alone are not used to determine remission. But I was C-ANCA and P-ANCA positive when diagnosed and now I am negative. I see that as a positive sign. Since my kidneys are involved, like Blake's Mom, I am very concerned about continued WG activity and hope to be declared in remission soon. Then I will just continue to worry over a possible flare.

[mrtmeo]

Blake,
My Dr did not say when he would determine if I am in remission. I assumed he would determine that after he reads the lab results done on 1-19. I don't see him again until early April. Thanks for the information about fatigue and body pains- taking up to a year to recover. The physical therapy has helped somewhat with the pain, but not fast enough to satisfy me. I just keep at it every day.

As for ANCA tests, I do know they alone are not used to determine remission. But I was C-ANCA and P-ANCA positive when diagnosed and now I am negative. I see that as a positive sign. Since my kidneys are involved, like Blake's Mom, I am very concerned about continued WG activity and hope to be declared in remission soon. Then I will just continue to worry over a possible flare.

Hi Karen,
Could some of your pains be from tapering prednisone?

[drz]

I was in remission without drug panels, lasted four years however the fatigue never went away. Some days worse than others, have naps most days just to have some evening time with Deb. I'm with Nikki on this one I hate fatigue also. Oh, I am back on Prednisone, CRP and PR3 were slowly rising, started at 5mg now at 1mg and will probably stay there until Rheumy in March.
Dale

My experience is similar. My fatigue is enhanced by my diabetes which can cause it alone, kidney damage from diabetes and Wegs, lung damage from Wegs, neuropathy that makes walking more difficult, problems sleeping at night due to medical problems like congestion and dry mouth, the various meds I take, plus the Wegs too. I often need naps and a good day is one where my out of bed time equals my in bed time. The fatigue really gets bad when I get infections or when the Wegs flares up like now and the past few weeks. Pain is also very exhausting.

[renidrag]

I was told I was pre diabetic three years ago, no one has mentioned it since, don't even do the test anymore. Covering their bases I guess. Can relate to neuropathy, left foot feels like jello, leg swollen, right not so bad. I have persisted and walk a mile every three days.
Dale