Questions from the new kid in the sandbox

[marta]

Since joining this forum and introducing myself a few days back, I have had amazing feedback and support, and I am very glad I stumbled - literally - here. I've been told if I have any questions that surely someone on here might have some answers, so here goes. The first of many, I'm sure...

1. What constitutes a 'flare' - in your experience?
After posting my exhuberant introduction and more than a month of feeling progressively better each day without any pain to speak of (codeine has not seen the light of day for more than a month) I had a crazy, strange day the other day with a bunch of symptoms that not only hurt all over, but also freaked me out a bit. I don't know if it's just a blip in the continuum, or something associated with our attempt to wean off the prednasone (I was to go down to 45mg from 50mg today, but am holding off now for a bit), or something related to my first exhilirating bike ride, or just me being sucky...

2. Does anyone know how to get some good research on this whacked out disease?
I've looked at various sites from recognized institutions, however they have all written their content for web and the general info is quite similar. I'd like to really get into the thick of things and get my head around it (this is where my brother in law would pipe in and say something like "your head is already a round", in fact he told me just that this evening, it is funny, really).

3. What are the common lab work tests done for this, do any of you see yours, and what are the norms we are shooting for?
Complicated one. Since I have this souvenir for the rest of my life, I'd like to go in armed with a little knowledge, and right now I feel like a toddler in a University session when I talk to my doc. I would like to be more in control of my destiny than the silent, innocent bystander I feel like right now.

4. I heard this in the last couple of months, can't remember where, it's all a bit of a blurr right now, that there is a cyclical pattern of Wegener's diagnosis, in that there are times where very few people get it, and times where the number of people diagnosed spikes. Has anyone heard of any epidimeological studies done on this? Just curiousity on this one.

I look forward to reading what you have to say, and many many thanks in advance.

[pberggren1]

Well Marta, as far as number one goes I would say that if your initial symptoms at first onset reapear then you are probably having a flare. But blood work would also have to be done to make sure as well such as ANCA but more importantly ESR and CRP and white count, etc. It also depends what meds you are on currently and at what doses. It is all so complicated and depressing because sometimes it is very hard to diagnose a flare because the Wegs can change on us as to what symptoms are going to pop up. Some new ones could come along for the ride as well and all with verying degrees of severity.

I would ask Jack about #2.

About #3. ESR, CRP, ANCA, liver enzymes, CBC - which includes white count, creatinine, etc.

About #4. I'm not sure about this one but Jack or Sangye could probably help in this area. There is another Weggie in Saskatoon, SK and her husband is an Epidimeologist. Her number is 306-384-9310. She is a very nice lady. She helped me out when I was having my first flare.

[Jack]

1. Phil puts it very well. You can expect quite a bit of the good-day / bad-day stuff, but a flare is often a return of original symptoms. As time goes on this can become complicated by new symptoms and also drug side effects so it can get very difficult to determine what is going on. Blood tests can help with making the decision. Steroid withdrawal problems usually start at around 10mg of pred, but a flare can come on at any time.

2. There is already a lot of research going on around Vasculitis and Auto-immune diseases, but they don't have the high profile of cancer and heart disease. I can only recommend that you trawl the internet for information and medical papers. My own hospital runs a vasculitis research team so I count myself lucky.

3. As above plus anything else your consultant think necessary. The thing to bear in mind here is that there are no norms when it comes to Wegener's. If your results are all over the place, but you feel well then that's OK. I recently spent time in a different hospital to my usual one and had to do battle with the doctors over my bloods. They kept trying to treat me for my strange results until I got them to consult with my Wegs specialists. They then left me alone.

4. Never heard of the cyclical theory, but there have been quite a few studies on the cause of Wegener's. They have all been inconclusive, so you can pick the cause that fits your own circumstances and believe in that if you like. In my own case, I like to think that I caught an infection that my immune system could not cope with so it went into overdrive and started to kill everything! This is based upon very few facts, but I like it.

[JanW]

As to your question #2, I like the webcasts on the Vasculitis Foundation site quite a bit...it works only if you like taking in information through hearing, because these docs are talking about some really complex stuff. Of course these films are almost two years old now but I'm sure they will put new ones on after the patient conference at the end of this month.

For question #3 it's really tricky because different labs has different values and different countries take measurements in different ways (I liken this to how drugs are named differently in different countries). When you look at your bloodwork report, you will likely see any abnormality highlighted as well as having a reading as 'abnormally high, abnormally low." You can request your blood work at any time and there are many good sources on the internet that will tell you exactly what all the abbreviations mean. Typical tests ordered include CBC, sed rate (ESR) c-RP (c-reactive protein) c-ANCA and P3 (these two often together). Everything but the ANCA and P3 come back within a couple of hours.

[marta]

Thank you all so much. This is great information and also gives me a sense of peace about the whole thing, well, relatively speaking.
I will dive head first into this new realm and hopefuly come out the wiser and stronger.

[JanW]

It's a lot easier if you have a doc who treats you like a grown up and a real partner in your own healthcare. The unfortunate (or fortunate) part is that the patients with the most knowledge are the most likely to have that relationship and get a better quality of care. You can see a doc's eyes light up when you ask them about their area of research or talk about a study you read on medline. The long story short is that they view you as a thinking person on their level (that sounds so sad, but there it is) and treat you with more respect.

Just a few years ago, docs were complaining about people going to the internet as a source of information and getting it wrong. Now, with young docs if you haven't researched your condition and can give them three or four possible scenerios, they think that you don't care what happens to you. When I went in talking about WG at the first visit, they took me seriously, believe me!

[Sangye]

Here's the place to get research on Wegs. If you begin to type in Wegener's Granulomatosis, all kinds of choices appear that will fill your days with reading.
PubMed home

I ask my Wegs doc about the latest research, drugs, etc... and he's always happy to talk about it and explain the status of ongoing studies or drugs that haven't panned out, etc....

[marta]

Thanks Sangye, I can see some hours lost in there already. This is great.
Jan, yeah, I totally agree, and I'm lucky cuz my doctor is totally respectful in that way. She's awesome and I feel very lucky.

Thanks ladies.

[Sangye]

Also, if you type in "Wegener's Granulomatosis and" you'll get tons more choices to pop up.

Happy reading. We'll see you in 6 months.

[pberggren1]

Thanks Doc!