White Blood Cells - NONE

[mzschaumkell]

Hi guys, need some help. My partner was diagnosed on June 30 and he was taking Cyclophosmophide and Pred. His kidneys are now normal and he has no other wegeners symptoms. He has gone off the cyclo and onto azathrioprine (200mg). Got a test on Monday and he has almost no white blood cells, so they changed the dose and put him onto 150mgs on Tuesday and now (Friday) still no white blood cells. They have said to not take it until Monday.

Anyone had experience with this??? What now?

[gilders]

I'm sorry, but I've never heard of Spencerian. A Google search shows nothing relating to anything medical. Are you sure you've spelt it correctly?

As for stopping the Aza. If he has no other WG symptoms, then with no white blood cells, stopping the Aza is probably the only option. If you are not currentl on pred, then this maybe reintroduced to help keep the WG from flaring back up.

[annekat]

It sounds like your partner has done very well in a short period of time, aside from the issue of the lack of white blood cells. I'm sure the above advice is correct, as I am not the one to answer this. I'm just so impressed that his kidneys are back to normal, he has no other symptoms, and that he was able to get off the CTX so quickly. Let us know what happens with the AZA and the white blood cells, and what the next move by the docs will be.

[DJS]

My wife had/has the same problem when taking aza and Dr cut her off until her white count went up. Then back on for three weeks. Blood results again showed no white cells. So right now she is off all medication and her rhumy monitors her blood work every month. Side effect of that drug. I say off all drugs since about Aug 1, but her hip started to hurt so her normal Dr put her on 40mg pred starting a week ago with a taper back to zero by the end of the month. That helped her hip!

[mzschaumkell]

He is still on 20mgs pred, but no symptoms of the wegs, ANCA is completely normal, so unsure what they will do. So there are no issues stopping the maintenance meds if symptoms dont return??

[Dirty Don]

Protocol is to wean off pred, then maintenance drug if no pred needed, then, as always, there will be 50% chance of a flare again. If there is another flare, and it's determined the current maint med won't work...it's on to the next strongest drug.

[drz]

Hi guys, need some help. My partner was diagnosed on June 30 and he was taking Cyclophosmophide and Pred. His kidneys are now normal and he has no other wegeners symptoms. He has gone off the cyclo and onto azathrioprine (200mg). Got a test on Monday and he has almost no white blood cells, so they changed the dose and put him onto 150mgs on Tuesday and now (Friday) still no white blood cells. They have said to not take it until Monday.

Anyone had experience with this??? What now?

I had to stop CTX several times because of having too low of WBC. It would usually rebound to minimal level in a few days. They would give me the drug if my WBC was 3.0 or greater even though that is still a poor level and below healthy range.

[gilders]

Protocol is to wean off pred, then maintenance drug if no pred needed, then, as always, there will be 50% chance of a flare again. If there is another flare, and it's determined the current maint med won't work...it's on to the next strongest drug.
Protocol for me has usually been off Aza first then off pred. So in your case it looks like the same route I usually take, albeit he's come off Aza earlier than initially planned. We really can't say if his dr will reintroduce aza. I came off ctx very early as I couldn't tolerate it and it wasn't reintroduced. If I was to guess, I'd say so long as there's no further indication of a flare he won't be back on Aza and everything should hopefully go well.

[DJS]

Yes, it is scary without meds. GPA started with an over active immune system, and the immuron slowed it down. Now the trick is to get the immune system working but not too good. My wife walks about 2miles a day to build up her strength.
wonderful to have a dog to walk.

[mzschaumkell]

So his white blood cells are at .1 and they need to be at 1.5 before doc will start medication again! So has to have injections of white blood cells for the next 5 days to try and kick start it...so it's just a waiting game.

[drz]

Is the infusion just WBC or regular whole blood transfusions?

[mzschaumkell]

I think it's a particular fake type of white blood cells used to stimulate bone marrow. It's just done at home, with daily tests to see if they budge, they should be moving nob considering he has been off meds for 5 days.....

[woz]

Hi mzschaumkell, looks alittle like what happened to me, just as I was about to go from cyclo to aza, my white cell dropped to 2.5,
my doctor stopped my cyclo ( as you do when you are changing from one drug to another) for about one week, in this time my count went back to normal, about 8.5
(normal range is usually between 3.5 and 10), and then started me on aza, 25mg, then went to 75 mg/ now I am on 150mg for the next 18 months or so, my anca and pr3 have been normal, and I have weaned myself off pred (nil for 2 months). I hope everything goes well. I might be holidaying in NZ next year, If I am I will try to call in, with a couple of beers, all the best.

Regards Woz.

[drz]

So his white blood cells are at .1 and they need to be at 1.5 before doc will start medication again! So has to have injections of white blood cells for the next 5 days to try and kick start it...so it's just a waiting game.

When I got too low (under 2.0) they wouldn't consider starting the CTX again till I recovered back up to 3.0 because otherwise I would soon be back in the very low range again. Infections can be very serious at those low ranges. I had to avoid contact with people and often wear a mask too.

[mzschaumkell]

Hi guys, so after the one injection, white cells are back up to 4.0. Still not on immune suppressor so as they need to figure out whether to put him back on the aza or not.....I might suggest what they do with you Woz and taper it upwards...