confused

[Deanne Hull]

Can anyone maybe help with advice, i have been doing so well with all my markers at normal levels and as a result had a small drop in medication and now after 6 weeks my blood work has come back with levels
higher than when i was first diagnosed. Last time I had a flare up my eyes played up very badly and had three things wrong with them over a period of 6 months, this time, absolutely nothing appears to be wrong with me. Is there something I should be looking for or am i looking for somthing that is not there

I have felt really good, do you think the results are wrong, all my family feel the same way, they ahve seen me at my worst and best with this horrible disease. I told the doc the test might be flawed so we have had another blood test and I won't find out until next week. I feel very confused and upset and maybe there might be something wrong i don't know what to think.. running out of tissues and have started on the loo paper. I have enough tears to fill a bath.....

[Jack]

It is not at all unusual for test results and how you feel to be in conflict and this is where the experience of a specialist in charge of your care comes into play. You do not specify what result you are referring to in your post, so I would hate to try to make any firm recommendation, but in general, how you feel comes before test results. My own blood results are all over the place and doctors not familiar with me often want to start new treatment. I then have to explain that they have been like this for years, and I feel fine (or at least no worse! ;) ).

See how the repeat tests go and in the meantime watch for old symptoms returning or anything else out of the ordinary.

Have a good weekend! :thumbup:

[andrew]

First thing's first. Sit down, relax and be aware of the fact that you are feeling good (at least that's the way I read your post). If you're feeling good then you're half way there. My blood work can be a disaster but at the same time I can kick a$$ and take names day after day without so much as an itch. WG is a funny (as in funny-weird) illness and blood results go up and down. You'll find this can be particularly so when the meds start to get changed/raised/reduced. It's one of the undocumented features of WG. There are also many external factors besides changes in meds that can affect your general health and sometimes blood results too such as people that are sick, random infections, pollen in the air that can aggravate already WG-affected airways, dogs that crap on the carpet like one of mine just did (that affects my health 'cause it raises my blood pressure. Seriously, she's been doing number 2's for 17 years and she can't think to go outside this time? Sorry, got sidetracked).

Anyhoo, look what I'm trying to say is that you'll get the ups and downs all the time. You may find that your meds just need a tweak again. Perhaps you need to go back up to the level you were on and maybe reduce slower this time. Incidentally, which med was reduced? Prednisolone? Cytoxan? Imuran etc? Which blood levels went haywire?

Keep in mind that you have been doing really well AND it also sounds like you have a very supportive family too which is awesome. If you're not feeling any symptoms either then that's also a good thing. Good idea to get the blood tests again but be prepared for them to come back all out of whack again. Sorry to say that but it may happen. Your doc will be able to recommend the best course of treatment thereafter. Remember: feeling good is half the battle! :)

[Deanne Hull]

Hi guys thanks for the advice, alot calmer now thank goodness, it was such a blur at the docs office but I think it was the c-anca, anti-pr3 test was 131 and 6 weeks ago it was 5 and when i was first diagnosed it was 64, and I was really sick and in hospital so WTF really, The doc reduced the pred down from 12.5 mg to 10 mg a day and the cyclophosphamide down from 100mg to 75mg a day 6 weeks ago and in April when my results were 10 he reduced both of them by half and then i got the eye probs.

But this time I am far worse with the blood test results and I am feeling even better than I have been since I was first diagnosed so?????? this is why I am confused. The nurse who took my blood did have some probelms with the tube collecting my blood so maube there is something wrong with that???? Am I grasping at straws?? Perhaps i have had a small flare up and they have written the wrong thing down... this is all going thru my head, I guess you just want to be well.

But in the end I am luckier than the poor boat people who have just drowned off Christmas Island trying to escape their dreadful conditions in the own country while trying to get their families a better life in Australia...mine is a slight hiccup.

[Jack]

How long have you been taking the ctx Deanne? Anything more than 6 months and you need to be asking questions.

[Deanne Hull]

I have been on the cyclophosphamide since sept 09 and what sort of questions do I need to start asking?

As my resuts were getting better we were going to change the the cyclo to something less toxic

[Jack]

6 months is a good target to work to when taking ctx due to its accumulative toxicity that never leaves you. 12 months is usually considered to be a maximum before the risks become too high and it still leaves you with a little bit in hand to use if you really need to in future. If you are feeling well and your results are good you should be changing to something like Azathioprine as soon as possible or if you are still having problems you need to know why. Has the ctx dose been large enough? Do you perhaps need to try something else?

[Sangye]

Deanne, I agree with everything said above. You should not be on ctx for longer than a year at a time, and in most cases they want you off of it in 3-6 months. If you still need ctx to control the Wegs after 6 months, they should consider another drug like rtx. Of course there are exceptions and it's possible to flare once they decrease the ctx.

Also, the ANCA is not a reliable predictor of disease activity for most people. (And yes, difficulties with a blood draw can cause errors) What were your inflammatory markers? Your doctor should not be treating you based on ANCA rising or falling.

If you're feeling fine, it's highly likely that you are fine.

[JanW]

Current recommendations are for ctx no more than six months, Deanne. The question you would need to be asking if when you could step down to a less toxic drug (cellcept, mtx, imuran) and kick the pred entirely. There are recommendations that patients should be on that no longer than 3-6 months, but my experience here on the forum with the 'average' patient certainly suggests that people are on pred for much longer.

All of this is very tricky if you don't have a WG specialist, and I would never want to suggest what a doc who isn't really skilled in this disease should do. If it's any consolation to you, my doc and I don't even talk about blood results (although we would if my liver enzymes were up because I take mtx, or if I had a creatinine problem since I have no kidney involvement to date). His lab (at a renowned teaching hospital) hasn't put a number to c-ANCA in a few years, so I never knew what mine was than 'highly abnormal.' My P3 was in the 90s prior to diagnosis and has hovered around 60 now. I'm probably six months or so into medicated remission. My ESR isn't even particularly low (normal, but on the high end). My doctor thinks that P3 and ANCA are good diagnostic tools at first presentation, but absolutely lousy at telling you how well a WG patient really is.

For that he talks to the patient about symptoms, and looks at history.

[JanW]

OK, one other thing. My ENT (WG specialist) says that his key question (I suspect this is only for female patients, but still) is "can you keep up with your kids?" in terms of assessing your health, because for us moms, that's going to be the last thing to go. This time last year, when I could barely do the holiday stuff, I still killed myself trying to keep everything normal for the kids. I think it's a really good question.