Blood Tests - what to check

[Debbie C]

My tests are basically the same as everyone elses. The sed rate can be do to any inflammation not necessarly wg. I never get cked for c-anca since being dxed. There is usually a trace of blood in urine tests but they are not concerned with that,if it were more than I know they would be concerned.I know she looks at the Alt and Ast, not sure what those are off hand,I know I have googled them. I was going to go do my bloodwork today,but have a terrible sinus headache with the weather dropping 30 degress. Was there something in yours that you wonder about ???

[debra]

Deb, hi... Alt and Ast, are liver enzymes... Interestingly I have had blood in urine as well, since 2012, and just last couple of urine samples are reflecting an increase in creatine, protein, leukocytes, ect, so maybe getting somewhere... And its about time, I'd say... Coming up on four years. Hoping this pulmonary doc, is my knight in shining armour... Hope you feel better Deb... Deb...

[jlove]

Middlesista, in my experience, my rheumatologist takes note of more mild symptoms but doesn't really alter my treatment plan for something like fatigue unless it's in combination with other symptoms. I haven't had much in terms of joint pain or rashes but I was very fatigued when my nasal crusting really flared up and this resulted in a change in my treatment plan.

Blood work is monitored and anything alarming is always addressed. My blood work tends to be fairly normal, though, as most of my symptoms are of the limited Wegener's variety. What it comes down to, for me, is whether or not my symptoms are really limiting my daily activities. If fatigue were really limiting me and I was able to convey this to my rheumatologist, I think he would consider making an adjustment in my treatment. If it's something that's inconvenient but not ultimately dangerous or incredibly limiting, it goes into a "watch for further development" pile until it becomes a little more serious. It seems like if a drug is working for most of your symptoms but not a few minor ones, it's not worth it to jeopardize having the more serious symptoms under control in order to deal with more mild symptoms.

[Middlesista]

My docs treat based on blood & numbers. They watch the lesser symptoms closely, but usually won't make a move unless my numbers are up. My internist treats milder symptoms if the numbers are normal...otherwise, the WG team does it. Best to you.

Thanks Dan! Seems my RA is doing the same thing - not as impressed with the lesser symptoms I bring to his attention. What seems big to me dies not seem to impress him much.

[Middlesista]

Middlesista, in my experience, my rheumatologist takes note of more mild symptoms but doesn't really alter my treatment plan for something like fatigue unless it's in combination with other symptoms. I haven't had much in terms of joint pain or rashes but I was very fatigued when my nasal crusting really flared up and this resulted in a change in my treatment plan.

Blood work is monitored and anything alarming is always addressed. My blood work tends to be fairly normal, though, as most of my symptoms are of the limited Wegener's variety. What it comes down to, for me, is whether or not my symptoms are really limiting my daily activities. If fatigue were really limiting me and I was able to convey this to my rheumatologist, I think he would consider making an adjustment in my treatment. If it's something that's inconvenient but not ultimately dangerous or incredibly limiting, it goes into a "watch for further development" pile until it becomes a little more serious. It seems like if a drug is working for most of your symptoms but not a few minor ones, it's not worth it to jeopardize having the more serious symptoms under control in order to deal with more mild symptoms.

Someone had written that it is wise to be proactive vs reactive and that made me think. Some of the more serious issues are sometimes not obvious until damage is occurring - such as lung lesions and u would need a CT scan to catch this unless the damage is causing symptoms such as SOB or coughing up blood. I would like to not have to react to a big issue if I can prevent things from getting out of hand. I know there is no rhyme or reason to this disease - I guess I am just trying to make sense out of something that is so senseless and follows no patterns and trying to,determine if there are preliminary clues of a milder type of effect before significant issues occur. If I had my way I would like blood work every week although my veins would not appreciate this

Thanks jlove.

[jlove]

I have definitely experienced what you're describing. I went undiagnosed for a while because I was ANCA negative and only showed two criteria for Wegener's. Toward the end of my senior year of college, my nose started getting really congested and I thought nothing of it. Eventually, I had really bad crusting and, by that point, I was suspicious something was up so I figured I would mention it when I saw my ENT. I also figured it would be fairly minor and she could maybe prescribe a nasal spray or something to sort it out. She knew my full history as I had been seeing her for subglottal stenosis and she was the one to break the news to me about how nasal crusting is also a Wegener's thing. It was almost a relief at that point because finally I had a name for my mystery symptoms but it was still so unnerving for the new symptom to creep up like that. I wish I had done more research but, to be fair, I still didn't really know what I had and I knew both my parents and doctors were hoping Wegs wasn't it.

So I know how you feel and I am also the patient taking note of every little ache and sensation in every part of my body. I also spent many appointments explaining these notes to my rheumatologist and, for the most part, he shut them down fairly quickly. At first it feels like, well, I did all of this noticing... how could I be wrong? On one hand, we are basically professional patients by this point. We have one of the unfortunately sneaky diseases out there and so we are hyper vigilant. This is a survival mechanism, and it's important, but it also means we may be picking up on things that aren't necessarily a big deal. The important thing to look for is patterns. Every time I present a symptom to my rheumatologist, he asks further questions about when this thing happens. Is it after a particular activity? Is it a consistent feeling in one particular place? Take note of the patterns.

Basically I think it's important to know what is a possibility in terms of how Wegener's manifests. Just be aware of the major things that can happen so that you know what to look out for. You should take notice of your body and don't worry about presenting too many symptoms to your rheumatologist. It's what they're there for. I trust my rheumatologist very much. I guess I should quickly also add that having a rheumatologist (or other physician) you trust is very helpful. Mine is well-known in the Wegs world (Merkel for those playing along) and I still ask him every dumb question I can think of when I have my appointments because, who cares if he thinks I'm a little crazy? The more questions you ask, the more you will learn about what questions are good questions to ask. If you are paying attention to your body and seeing your rheumatologist often (I go every 3 months), you should be able to catch a major development happening before it becomes serious.

I feel as though I may have told you some of this in another thread but I have a lot to say on this topic. I had a hard time adjusting to life with a whoooole new set of worries. You learn that you play a big role in your own care and you're like "uuuuum what, I am not qualified for this." At least, that's how I felt. Just be open to learning and observing and it definitely gets easier to manage.

[debra]

My sista, stuck in the middle, hi. I totally agree with this... I think, and this is my opinion only, please, that I could deal better with any sickness in the world, aopposed to this one... I'm not kidding when I say this disease is like a monster with a brain all its own! Sneaky, and plays hide n seek!!! It's just nuts! Absolutely exhausting!!! Then more tiring, as if that's not enough, and it is, its tuff diagnosing! What more? Venting does help, as does knowing you're not alone with this horrendously affliction... Hanging in there all together. Deb...

[debra]

Jlove, really great post... Very lucky to have Dr. Merkel, also... Deb...

[debra]

Horrendous affliction, tried editing, but could not??? Some things, never change... Deb...

[Middlesista]

Jlove - thank you for your response and you are so correct about being hypervigilant -

i do keep note of questions that I have for my RA he just does not seem as I impressed with these "lesser" symptoms than I do