Fatigue?

[mrtmeo]

I was wondering if anyone knows if the severe fatigue that plages those of us with vasculitis is from high inflammatory indicators, such as ANA, ANCA, C-rp, RF, ESR or is it the result of immune suppression or something else.

Any thoughts?

[Pete]

I think it's a symptom of our dumb disease. The test markers you cite indicate how severe the physical symptoms are.

[mrtmeo]

Hi Pete,
If someone is in complete remission, they shouldn't have any elevated inflammation factors or anca's.
Do you have a high neutrophil count?

[Pete]

Don't know the neutrophil count as it's not included in my monthly CBC. My sed rate and c-RP are within normal limits.

[mrtmeo]

Don't know the neutrophil count as it's not included in my monthly CBC. My sed rate and c-RP are within normal limits.

Do u still have fatigue?

[NikkiNicole]

Fatigue is something I got initially and it has never gone away ...ever. I hate it. Some days it is horrible and others it is just there. I hate it.

[Pete]

Do u still have fatigue?

Just a little on the day after I take my mtx. It doesn't interfere with my normal activities. At disease onset and when I had a flare 3 years ago, the fatigue was crushing.

[mrtmeo]

Fatigue is something I got initially and it has never gone away ...ever. I hate it. Some days it is horrible and others it is just there. I hate it.

Have u been in remission, yet?

[mrtmeo]

Just a little on the day after I take my mtx. It doesn't interfere with my normal activities. At disease onset and when I had a flare 3 years ago, the fatigue was crushing.

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)

[renidrag]

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

[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

[annekat]

My inflammation level measured by SED rate is currently normal. My doc does not include CRP or ANCA in my tests. My creatinine has always been normal. My fatigue has improved noticeably over the last few months, but it is still there and I don't expect it to ever go away entirely. I think some of it is from being out of shape, not exercising enough, and some is from permanent damage done by the disease, most notably in the lungs, although mine were less severe than others, and in the ears and eyes and nasal cavity from relentless inflammation in the past and extensive erosion and tissue damage. The results are hearing loss, occasional dizziness and vertigo, blockages and ear infections from e-tube dysfunction, nerve damage in the ears from ear infections, and double vision from erosion of the sinus bones under the eye sockets. Aside from not getting quite enough oxygen from damaged lungs, it is exhausting just dealing with all these symptoms, even though I might be in remission (though no one has said so). I also have some neuropathy left in my feet, which is most noticeable at night and can interfere with sleep sometimes. All that said, I feel I'm doing really well and am in much better shape than a year ago. I do think the fatigue will always be there on some level, even as a result of overloading the body and brain with too many activities. It has occurred to me that some of my brain cells have been destroyed, too. It sure feels like it sometimes. And then there are the meds, and like Pete, I'm usually more fatigued after taking MTX, although sometimes I barely notice it. A lot depends on stress levels for me, what else is going on and what I'm trying to deal with all at once. If Wegs is still smoldering a bit, despite low inflammation markers, stress will start to push things over the edge and fatigue may be the first thing to crop up.

[mrtmeo]

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

My mom used to have her feet and calf swell on and off.
This was the waxing and waning of the disease, but that is one of the 2 symptoms that went away.

[Thinker]

Fatigue is a common symptom of many different autoimmune diseases. Mine is better now than when I was initially diagnosed, but I don't think it will ever completely go away unless they find a cure and not just treatment for this disease. It's also exacerbated by the medications we have to take to prevent flare ups. :sad:

[jakekell]

My inflammation level measured by SED rate is currently normal. My doc does not include CRP or ANCA in my tests. My creatinine has always been normal. My fatigue has improved noticeably over the last few months, but it is still there and I don't expect it to ever go away entirely. I think some of it is from being out of shape, not exercising enough, and some is from permanent damage done by the disease, most notably in the lungs, although mine were less severe than others, and in the ears and eyes and nasal cavity from relentless inflammation in the past and extensive erosion and tissue damage. The results are hearing loss, occasional dizziness and vertigo, blockages and ear infections from e-tube dysfunction, nerve damage in the ears from ear infections, and double vision from erosion of the sinus bones under the eye sockets. Aside from not getting quite enough oxygen from damaged lungs, it is exhausting just dealing with all these symptoms, even though I might be in remission (though no one has said so). I also have some neuropathy left in my feet, which is most noticeable at night and can interfere with sleep sometimes. All that said, I feel I'm doing really well and am in much better shape than a year ago. I do think the fatigue will always be there on some level, even as a result of overloading the body and brain with too many activities. It has occurred to me that some of my brain cells have been destroyed, too. It sure feels like it sometimes. And then there are the meds, and like Pete, I'm usually more fatigued after taking MTX, although sometimes I barely notice it. A lot depends on stress levels for me, what else is going on and what I'm trying to deal with all at once. If Wegs is still smoldering a bit, despite low inflammation markers, stress will start to push things over the edge and fatigue may be the first thing to crop up.

Annekat,

Do you use oxygen? I use oxygen machine at night as my levels are a little low I think I am not quite as tired since I started using it. I think your right that that will always be fatigue with wegs. I was in remission at one point during the past aprox. 9 years, was still tired just not quite like now that I am in a flair up.

[Velma]

I also am very tired the day of Mtx and a little the day after too.

[mrtmeo]

Does anyone know if this constant fatigue is grumbling disease or something else?

[annekat]

Annekat,

Do you use oxygen? I use oxygen machine at night as my levels are a little low I think I am not quite as tired since I started using it. I think your right that that will always be fatigue with wegs. I was in remission at one point during the past aprox. 9 years, was still tired just not quite like now that I am in a flair up. No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.

[annekat]

Does anyone know if this constant fatigue is grumbling disease or something else? I guess you mean what we call "smoldering" Wegs.... I like the term "grumbling", too. I think the constant fatigue can apply at just about any stage, in varying degrees. The "grumbling" Wegs can come and go and vary in intensity, either for months or years before dx, or after remission or great improvement, during flares, which may be minor and temporary, or more serious. Even when in remission or doing very well, as I am now, I still feel the fatigue according to my activity and stress level, but I wouldn't call it "constant" or severe. I'm sure I felt some of this fatigue during the couple of years before my dx, not having a clue I had Wegs but going through a series of sinus and ear issues. I don't think I'd call it a severe or crushing fatigue until around the time of dx and thereafter, since that was my first lung involvement and the most severe illness with Wegs so far, and of course the meds were part of it. I don't feel that Wegs is currently "smoldering", despite the occasional fatigue.

[jakekell]

[QUOTE=annekat;94549]No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.[/QUOTE
I didn't think I was having any particular problem and one of the docs ordered a test, needed to use at night not during the day. I was quite surprised and then every January it had to be tested for 3 years in a row to make Medicare happy. I am now entitled to the have the machine for life as the test continued to show I was low a little low at night.

[annekat]

[QUOTE=annekat;94549]No, I don't use oxygen and it probably isn't necessary for me. I think I'm getting enough, and I function well and am able to do physical activities like walking a mile and stacking and splitting firewood, among others. I might start to get short of breath a little faster than before Wegs and the moderate damage to my lungs. But I'm doing much better than ever, so far this year, which will be fours years since dx in early April. On the other hand, I haven't had my oxygen levels checked, just occasional breathing function tests with a simple spirometer.[/QUOTE
I didn't think I was having any particular problem and one of the docs ordered a test, needed to use at night not during the day. I was quite surprised and then every January it had to be tested for 3 years in a row to make Medicare happy. I am now entitled to the have the machine for life as the test continued to show I was low a little low at night. Hmm, that's interesting, I wonder what an oxygen level test would show for me. My WG doc is a pulmonologist, so I'd think he'd have thought of it, but he doesn't know Wegs as well as some docs and I'm not sure he's covering all the bases.

[mrtmeo]

I didn't think I was having any particular problem and one of the docs ordered a test, needed to use at night not during the day. I was quite surprised and then every January it had to be tested for 3 years in a row to make Medicare happy. I am now entitled to the have the machine for life as the test continued to show I was low a little low at night.

Have you done a sleep study to see if you might have sleep apnea?

[annekat]

[QUOTE=jakekell;94553]

Have you done a sleep study to see if you might have sleep apnea? Sorry, I goofed up the quote function on that last one, and the question was directed at Mary (jakekell).

[jakekell]

[QUOTE=jakekell;94553] Hmm, that's interesting, I wonder what an oxygen level test would show for me. My WG doc is a pulmonologist, so I'd think he'd have thought of it, but he doesn't know Wegs as well as some docs and I'm not sure he's covering all the bases.

The test is simple just a little thing I put on my finger for the night hooked to a monitor and the tester picked it up the next morning.

[Marty B]

Hi, I know for me that when my numbers are high I'm in severe pain.. I know as the numbers go up and let the doctor know I'm in horrible pain, he does blood work and let's me know it's back.. We work well together, but I've been seeing him since 2006.
You need to have a one on one trust with your Rheumatologist.. He or she should be able to look at you and tell you how your feeling..
Good luck..

[mrtmeo]

There seems to be many weg's folks that have fatigue whether or not they are on immune suppressants and even when their inflammation markers are normal. There has to be something else attacking the body or maybe ATP which is our energy for cells. Maybe some pathogenic process triggers flares, such as mrsa?
Infectious triggers for vasculitis. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/24827750)

[annekat]

There seems to be many weg's folks that have fatigue whether or not they are on immune suppressants and even when their inflammation markers are normal. There has to be something else attacking the body or maybe ATP which is our energy for cells. Maybe some pathogenic process triggers flares, such as mrsa?
Infectious triggers for vasculitis. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/24827750) It could probably be any of that, or just that permanent, irreversible damage has been done to some of our organs and tissues, such as our lungs, brains, nervous systems, upper respiratory tracts, etc., which doesn't stop us from functioning but may make things more of a struggle. Also, a good number of us are middle aged or older, and fatigue seems to go along with that for many people. And simply being out of shape, due to not enough exercise, may cause fatigue! If our fatigue level has been low to moderate and then suddenly increases, then we should be concerned about a possible flare.

[jakekell]

It could probably be any of that, or just that permanent, irreversible damage has been done to some of our organs and tissues, such as our lungs, brains, nervous systems, upper respiratory tracts, etc., which doesn't stop us from functioning but may make things more of a struggle. Also, a good number of us are middle aged or older, and fatigue seems to go along with that for many people. And simply being out of shape, due to not enough exercise, may cause fatigue! If our fatigue level has been low to moderate and then suddenly increases, then we should be concerned about a possible flare.

I suspect of lot of what you said is true. I had energy running out my ears prior to wegs and now very low energy. I like a lot of us gained weigh t with the pred/stuggling to lose it. That aside doubt I would be a ball of fire even though at lot of my friends are at 68 it just is what it is.