going on exjade

[amberb]

I might be starting Exjade soon, to remove iron build up from transfusions. I don't know too much about the drug, does any one have any experience with it, side effects, etc??

[riccd2001]

As always YMMV. If you read the long list of side effects that Novartis says are possible, you'll have a good idea of what to expect. However, it does work and for me my doc wants me on it when serum ferritin is over 1000. Do make sure your doc Rx is in line wth your weight and don't exceed that dosage. Good luck!

[Forgot to mention an important effect: Creatinine level is one thing to keep a close eye on when taking Exjade. It's a bit of a balancing act to keep serum ferritin under control and Creatinine at an acceptable level. Make sure the regular CBC Lab test also includes a test for Creatinine.]

[Greg H]

Hey Amber!

I've been on Exjade for about 40 days now (1500mg per day). I've had almost nothing in the way of side effects. According to the package insert, about a quarter of folks reported abdominal pain and 10-20% had either nausea, diarrhea, or vomiting. But I've been lucky and had none of that. Less than one percent of folks have side effects related to vision or hearing, and a small percentage of folks had kidney problems.

At the risk of grossing you out by providing too much information, the only effects I have noticed is a red tinge to urine (the iron being expelled) and occasionally loose stools.

The drug comes as surprisingly large white tablets (about the size of a nickel). These have to be dropped into water or juice and the mixture stirred until the fine powder is well distributed in the solution. You wait 30 minutes before eating anything.

It is frightfully expensive. My tree tablet daily dose goes for $7,300 per month. So, it pays to have good health insurance.

Good luck!

Greg

[dfantle]

It's interesting your Dr wants you on exjade when your ferritin is "just" at 1000. Mine doesn't want to even think about doing anything til high 2000's. At 2,200 I decided to try adding wheatgrass (freeze dried which i believe is safer with compromised immune systems). My Dr approved this but it was my idea after doing a bit of research on it. My ferritin counts definitely came down from the wheatgrass so no drug treatment, yet. I stopped for a few weeks when I had the horse ATG (just 3 weeks ago) but just restarted it.

One nice bonus of the wheatgrass is it has a good amount of magnesium and potassium in it. Magnesium counts drop when on cyosporine so in addition to the magnesium supplement I'm now taking, my daily banana, coconut water and wheatgrass smoothie (plus different berries each day) is a great way to keep my magnesium and potassium up and reduce the leg cramps I was getting.

Best,

Sent from my mobile phone

[Marlene]

Amber,

Are you still getting transfusions? If not, what is your HGB count and Serum FE?

[amberb]

I'm not sure what my FE count is, they are going to check that next week and then discuss going on the exjade. This week my HGB was 9.9 and my last transfusion was 3/30, but I was having them more often before my second treatment of ATG. My Dr told me that once you hit that mark of having had about 20 transfusions you need to go on the medication. I think I've had that many, if not more over the last 9 months. I don't know anything about the dosing of the medication, I'll just have to find out when I follow up next week.

[Marlene]

I haven't kept up with Exjade since John stopped it but back then, they don't recommend starting it unless your FE is 1000 or greater.

Dosing is based on weight. You can look up the drug and become familiar with the dosing, side effects and precautions. This is a good thing to do before your appointment so you can get your concerns/questions answered before you start taking it. http://www.rxlist.com/exjade-drug.htm

John never got to a full dose because of side effects. Make sure you get a baseline chem panel done before starting. Exade can effect the kidneys and in rare cases, your counts. You should get a chem panel drawn monthly while on Exjade to monitor the effects.

[dfantle]

I've likely had at least 40 units of blood since end June and have heard exjade is used for much higher levels of FE than 1000. Though if you're having iron overload Symptoms that would make a difference. I'd likely ask a few more questions before starting. is your Dr a hematologist with a lot of AA experience?

Best,

[Greg H]

Hi All!

The Exjade package insert basically says it's not a good idea to continue it is the ferritin level is consistently below 500. It also notes that side effects -- particularly kidney and liver issues -- were more common among folks aged 65 or older. Most studied in that age group were MDSers.

As other have noted, your doc will want to monitor your kidneys and liver as well as ferritin. The package insert suggests having a standard vision test and a standard hearing test to establish a baseline before starting Exjade.

Take care!

Greg

[Greg H]

BTW,

You may find that you can't just go down to corner pharmacy and fill your prescription for Exjade. There are a handful of mail-order specialty pharmacies that stock it. I use one in Plano Texas. I call them up for refills, they check with my insurance for coverage, and then Fedex me the drugs.

Greg

[marmab]

My doctor wants me to start Exjade, as my ferritin is now over 3600. However, one of the black box warnings for Exjade contraindicates it for those whose platelet count is under 50(K), which mine is (thrombocytopenia is a big problem for me). My doctor's office is looking into this. From what I gather, the bleeding issues for those with thrombocytopenia while on Exjade are rare, and seemingly somewhat age and comorbidity related. I am quite healthy (except, of course, for this bone marrow issue). Has anyone else run into this issue when being prescribed Exjade? Maybe I should try wheat grass first? Thanks so much!

Marmab

[Marlene]

John was on exjade when his platelets were in the 20's. He started at 500 mg and worked up to 1000mg. You can look at desferal as an altnerative. If you have a picc or central line in, it's pretty easy to administer it to yourself at home. Or you can have them infuse it when you get transfusions.


Desferal works best when done over 3 -4 days in a row. John would do 5 days a week and rest for two.

[marmab]

Thanks, Marlene, for the information. My platelets go down into the teens and single digits routinely. It's good to know that your husband tolerated Exjade, and his low platelet count didn't seem to be a problem. I don't have a central line so that may be why the doctor didn't suggest desferal, but it's good to have options.

Marmab

[dfantle]

Hi, well it looks like the wheatgrass didn't do the trick for chelating enough iron for me so I will be starting on Exjade this week. My MRI liver scan taken this past week showed 13 grams of iron, so it's really high!

Good to know about needing to watch the creatinine levels as the cyclosporine I'm on can also impact that. Ugh, another medication!

[marmab]

I started Exjade because my ferritin is close to 4000, but had to stop after only a week -- high creatinine, and liver issues too, complicated by the fact that I'm still hemolyzing blood a bit. (A week after my second ATG in early April, I had an acute episode of hemolytic anemia for which I was hospitalized two weeks). I'm also on 500mg of CSA/day as part of the immunosuppressive therapy, so that contributes to kidney and liver issues too. I actually felt fine while taking the Exjade, but the labs showed otherwise. Once my kidney and liver issues are under control, we will probably try starting it again as the doctors are recommending a BMT, and reducing iron overload is desirable before transplanting (evidence of better outcome). But I'm dodging the BMT bullet week by week at this point. So far, so good....

Marmab

[Marlene]

Hi Marmab,

Try starting at a lower dose and see how you do. You can also try Desferal. It is easier on the body than Exjade. Again, I would not start either of these at the full dosage amount.

Marlene

[marmab]

Thanks Marlene. Yes, the doctors said that once my kidney and liver numbers were better, they would think about restarting Exjade at a lower dose, but indicated that it was a somewhat tricky drug to dose. So we will see.

Marmab

[Marlene]

John started at 250 for a month, went to 500 and then 750. 1000mg was too much for him. 1000mg effected the kidneys so he stop till the creatinine dropped and restarted at 750. He was able to handle 750 for quite a long time.

At some point, 750 became too much also and he dropped to 500. Finally he stopped all together when his HGB held at 10+. He then did phlebotomies.

[Lisa Z]

I was on Exjade for 6 month exactly! I decided to take it because once my Ferritin hit 1000, I wanted to get it back to normal range. It worked very nicely for me, but did make me feel nausaus from months 2-6. I had decided to stop regardless, because I work FT, and it made it difficult with the nausea, but I stopped when I was down to about 350 and then my counts went back to normal within 2 months time anyway. Ya gotta do what ya gotta do! I never actually had to throw up, it was just a mild - mid nausea feeling. I felt the benefits outweighted the risks. I will say, however, that NONE of my docs told me the side effects. But my local dr was very good about checking all of my counts and organ function so all was good!