Anyone have answers about blood work?

My sinus biopsy came back negative and blood work came back MPO/PR3 came back within the normal range ( <1 ) and new Rheumy said I do not have Wegener's. This is good news! However, I still have many questions. My liver numbers are 2 and 3 times what they should be and I have to go have an ultrasound on the 14th with a chest x-ray. Could this be from the meds I was on? and When you are in remission, do your blood tests come back normal? I know something is wrong and just want to find out what it is. I am also going to a neurologist because I am having memory issues and hand tremors. I have firbromyalgia and maybe a lot of this has to do with that. I will be extremely happy to not be a member of your elite group but sad to not have anyone to bounce info and questions off. :unsure:

Wanda, I'm glad you don't have Wegener's and wish I could answer your other questions. No doubt, there will be someone on here who knows more about that stuff and can shed some light. And don't feel you have to leave just because you are apparently not a Weggie! I know there are some on here who have other things besides WG, probably including fibromyalgia. That must be a really tough disease to live with.

Wanda, what meds were you on? Most of our meds do indeed negatively impact Liver numbers, I have previous liver issues so it's something I have to watch closely. MTX and CTX have a big effect, immuran has an effect but it is smaller.

Hey Bob, I was on MTX for about a month but it gave me severediarrhea and I was sick for 4//5 days, then he put me on Immuran but my new Rheumy says it's such a small dosage why bother. (25mg a day) But, I broke out in a rash all over my arms, legs, stomach and back so I don't think he wanted me to take more than that. I don't have a clue. I take Cymbalta for the but I really feel like the prenisone did a number on me.I was on 60 mg a day for 3 months then 40 for about a month and a half. I really am so tired of doctors. They just play guessing games with your life and make like it's no big deal. I have been telling my Doctors since 2005 something is wrong. I wish I had known to get my Rheumy to do a biopsy when he told me I had Wegs just from the ANCA test. Thanks for listening! Still looking for an answer to when you are in remission, do your blood tests come back normal?

Hi Wanda,

It doesn't sound like you're seeing a wegs specialist. If true, please check the Vasculitis Foundatio's website and make an appointment as soon as you can.

Good luck!

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Originally Posted by Pete

Hi Wanda,

It doesn't sound like you're seeing a wegs specialist. If true, please check the Vasculitis Foundatio's website and make an appointment as soon as you can.

Good luck!

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Pete, if I understood Wanda's post correctly, she's been told by her rheumy that she doesn't have Wegs. However, you are right, it would be interesting to know what a real Wegs specialist would say.

Anne, you are correct. My first rheumy did a c ANCA test and it came back positive so he put me on Septra for 30 days then MTX and prednisone. He didn't do a PR3 work up or biopsy. New rheumy did the MPO/PR3 and they came back within normal range. Now my liver numbers are off the chain and it has to be from the meds. I wish the new rheumy had done another c-ANCA test just to compare.

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Originally Posted by Wanda

Thanks for listening! Still looking for an answer to when you are in remission, do your blood tests come back normal?

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There has been discussion on here about how doctors can define remission so like most things the answer is it depends.....
When I am considered in a drug induced remission most of my lab work falls in the normal or close to normal range. Some things don't and never will cause of damage to my body organs from diabetes and Wegs. Some lab results are affected by the meds given to treat and contain the Wegs and thus may also be out of normal ranges. My doctor's define my drug induced remission as meaning my symptoms are stable and no change in my treatment is required. It does not mean being symptom free or having perfect lab results.

drz, thanks for the reply. I think at this point I'm going to have to wait until I get sick again and start over. My Fibromyalgia is really flaring right now because of all this added stress. I will see what happens with the chest x-ray and ultrasound Tuesday.

25 mg a day of Immuran seems a bit low Wanda. I'm on 150mg a day currently. I don't think Pred should affect your liver enzymes much. Are you still on some Prednisone? 60 to 40 is pretty drastic at one drop and could contribute to feeling bad.

I know you are in Florida, so the specialists are somewhat limited, but if you can find anyone on the Vasculitis Foundation website it is well worth the extra effort. I do know we have some other Florida based members that might have some suggestions.

This is nothing against your doctor, just that Wegs is so unusual that it really is worth it to see someone who deals with it regularly.

Bob,
I am not taking any prednisone. I dropped 5mg every 7 days and then 2mg for a week to zero. I also quit taking the immuran. Where I live there are no wegs specialists but my new primary care dr said he has several wegs patients (he's a Pulmonary and an Internist) he hadn't seen my blood work. I've only seen him once. He is the one who ordered the ultrasound and x-ray based on my ct's. I just don't know enough about the blood work and what it means. I will "hurry-up and wait" until results are back from chest x-ray and ultrasound and figure out what to do. Thanks for the advice.

I understand that completely. Perhaps he could consult with the Wegs specialists if needed. It sounds like based on what you said that your care appears to be improving with the new doc so that is good. It is unusual to go completely off prednisone that quickly, but if you were able to tolerate the reduction I won't question that :)

You definitely should be on some sort of maintenance drug if there is any activity for sure.