Can Exjade affect WBC?

[Lbrown]

Hi there,

My WBC has gone from 0.5 this spring & summer, slowly up to 1.5 now. This summer I was on 1500 mg Exjade a day. I started 2000 mg late Aug - late Nov. Back to 1500 mg since Nov 30.

Since Dec 1, my WBC inched it's way first to 0.8, then to 1.0, and last week to 1.5. It's the highest it's been since I quit tacrolimus last May. It had been 0.5 - 0.8 for quite a few months and relatively stable.

Clinically, I don't notice any difference. I am not sick very often. I get red cell transfusions every 2 weeks still. (Was diagnosed with Pure Red Cell Aplasia, then Aplastic Anemia, then "normal marrow - immune problem" - so who knows).

I'm not getting too excited about my WBC at this point, since I don't know if it is significant or not, but it beats going the other way.

Deb

[Marlene]

Hi Deb,

I don't recall how high your FE was when you started but as you lower the iron burden your bone marrow can improve. In other words, too much iron in the BM can suppress production.

[Lbrown]

Hmmm. My ferritin had been pretty much stable at around 1200, but in Nov or so it went up to 1800, and now it is at 2200. I know that's going the wrong way, but the units of red cells have been getting smaller and I've had to ask for 3 units at times. I am trying to keep my HGB higher than the 70s & 80s just so I can get through the work day (I am a programmer and can't think when my HGB is so low).

So I've been getting more blood, he reduced my exjade dose despite my ferritin being at 1800. Maybe my creatinine was up.

So I don't seem to fit the high ferritin explanation.

Maybe it is a real increase.

Deb

[Birgitta-A]

Hi Deb,
I was never able to take more than 500 mg Exjade/day due to decreasing WBCs - according to my weight I should have been taking 1250 mg/day.

You should ask why the Exjade dose was reduced - if it is because of increasing creatinine you could perhaps try to drink much instead of reducing the Exjade. I have heard diet experts at different videos say that patients with bone marrow disoders should try to drink about 2 l fluid extra/day. I do that and hope that my bone marrow will function better.
Kind regards
Birgitta-A
72 yo, dx MDS 2006 tx dependent from dx. Good results with Thalidomide + Prednisone since 2010. No txs since Sept 2010. Exjade stopped July 2011. Ferritin value now 866

[Lbrown]

Hi Birgitta,

Thanks for the info about your WBCs. I was pretty sure someone here had that effect with exjade. So that is one of the possible side effects. I will have to keep an eye on my WBC and exjade dose, but hope my WBC continues it's upward climb.

My creatinine goes up and down, it is pretty good now. He wanted me to take 2500 mg but I don't think I can handle that much. 2000 mg made my rash SO bad. I always have a rash from exjade. I will have to talk to him.

Since I quit diet sodas, I drink lots of water now! I had a real Coke the other day. Yuck.

Deb

[Marlene]

It certainly appears to be a legit increase. I didn't mean to imply that there's direct correlation between FE and ANC. Just that as excess iron gets pulled out of the bone marrow by the Exjade, the marrow functions better. What you cannot determine with chelation is where exactly the iron is being chelated from. A small amount chelated from one organ can have a greater benefit than a large amount from all the other organs. You just don't know which organ the iron is negatively impacting and the Exjade cannot target the most stress/damaged organ to chelate it first.

Don't know if that makes any sense, but I would keep on doing what you are doing because that is a good trend.

[Lbrown]

Hi Marlene,

That makes sense. I guess you never know where the iron is being pulled from, and it makes sense that lower ferritin could mean better counts. Then again, the ferritin is measured in the blood so who knows what the levels are in your organs.

I hope it's a legit increase. I would like to have a party, but like I say, I'm not getting too excited about it yet. I was mildly happy when it got to 1. Now my ANC itself is 0.9. But OTOH, it doesn't seem to be making any difference to how I feel. If only the reds would follow! Then I'd really be celebrating. I'd blab about my treatment all over the internet. But no blabbing until I get better.

Actually, I'd probably be too busy out doing stuff that I'd be too busy to be on the internet anymore.

Deb

[Lbrown]

So, I went back up to 2000mg exjade a day due to my ferritin being at 2200. My counts on Thursday Jan 12 were:

HGB 95, WBC 1.3, Neut 0.8, Platelets 95, Creatinine 118, ferritin 1904

Last time they were:

HGB 100, WBC 1.5, Neut 0.9, Platelets 98, Creatinine 96, Ferritin 2209

My WBC has dropped ever so slightly but I'm considering this as "holding", and I'm pleased. Ferritin dropping too, so that is good.

I'm finding the side effects of exjade a little easier if I drink more water when I take it in the morning.

Deb

[Lbrown]

More data, counts from Jan 26.

HGB 94, WBC 1.6, Neut 1.0, Platelets 82, Creatinine 139, ferritin 1282

I have been on 2000 mg exjade a day, so I don't think exjade is affecting my WBC at all. I have given myself today off from taking exjade. Also, my WBC seems to be inching its way upward.

Ferritin right now is nicely under control.

I think the root of my illness is an unidentified infection I had 20 yrs ago. I had a WBC crisis with a 0 count, and was hospitalized for 2 months with a fever of unknown origin (spiking to 106.2F every day). Two courses of G-CSF injections failed, IV abx failed, and the only thing that snapped me out of it was high dose cyclosporine which I had to quit due to liver side effects.

So, in my mind, I think it makes sense that my RBCs won't improve until my WBCs do. Those pesky cytotoxic T cells have to be regulated and calmed down.

I have felt absolutely terrible all week, certain I was getting worse. The treatment I'm on is certainly no walk in the park.

Deb

[Birgitta-A]

Hi Deb,
Very good counts and ferritin! The creatinine is too high but the kidneys have much reserve capacity. Too bad that you feel terrible - does Exjade have this effect?
Kind regards
Birgitta-A

[Lbrown]

I am taking olmesartan (lots of studies on pubmed on the use of it in kidney disease). It is supposed to trigger your immune system to kill intracellular bacteria which are theoretically the cause of autoimmune diseases. The bacterial debris and dead cells need to be cleaned up, and will cause higher than normal creatinine, but at the same time, olmesartan has a protective effect on the kidney.

It is also most likely partly due to the exjade too. If I did not take exjade I am sure my creatinine would be lower.

So the rise in creatinine is predicted and explained by the treatment I'm on, and is a sign that the treatment is working. I do feel it though, when the creatinine is high. Ugh!

I hope my WBC continues to improve. I had 6+ months at 0.5.

Deb

ps - I am still having red cell transfusions every 2 weeks.