Exjade info needed

[cheri]

Hi All--Happy New Year!
I tried to search the archives, but didn't see some of my questions there....

I will be starting Exjade soon, as Ferratin levels are over 1000. A few questions that I didn't see in the archives:

-I will be starting round 5 of Vidaza on Monday...my Dr prescribe Exjade weeks ago, but it just came yesterday. Any contraindications of starting Exjade while getting Vidaza shots?

-Is ferratin level increased through foods or is it just transfusions that creates overload? Should I be concerned about eating foods with iron, like eggs, leafy greens, and shellfish?

-Side effects? I know diarehha (sp) is one; frequent? Life altering?
Any other changes (urine color, etc) should I expect? Any kidney symptoms I should look for?

I read that once levels are back around 500, to discontinue Exjade. (under Dr's orders, of course) Any idea how long that will take? I have a 30 day supply, and I wonder if it is weeks or months.

Thanks, and hope 2011 brings better health to us all!

[Birgitta-A]

Hi cheri,
You know Exjade can decrease the counts - I can't take more than 500 mg/day though I should take 1250 according to my weight because my WBCs decrease. This will hopefully not happen to you.

Ferritin level is increased through food - I stopped eating red meat at dx because it was obvious that I should soon have iron overload. Then I drink tea and milk that should decrease the iron intake. It is the transfusions that really increase the iron overload so most kinds of food except red meat are OK.

Except low WBCs I didn't feel any adverse effects when I took 1250 mg Exjade/day. Desferal makes the urine red but Exjade makes the stool yellow-brown.

I started Exjade very carefully with 250 mg/day the first week, 500 mg the next week and so on. Then my counts and creatinine were controlled every week. High creatinine is very common.

It is not possible to know how long time you will have to take Exjade. Do you get blood transfusions now? I think most people that start with Exjade takes the drug for months or years. I started with Exjade Sept 2009 but don't take full dose. Then I receive Desferal iv with transfusions too.

You know Exjade seems to reduce the oxidative stress in the bone marrow so after a while many patients gett better counts.
Kind regards
Birgitta-A

[gipper]

Hi Cheri,

Thought I'd take a stab at answering some of your Exjade questions.

I don't know of any contraindications re taking Exjade while receiving Vidaza; however, I did take Exjade through four cycles of Dacogen (nothing exceptional resulted, but when taking more than one drug you can't be sure what is causing what)
Factors that increase one's ferritin count are at least these: 1) diet 2) RBC transfusions 3) acute phase reactions (inflammation or infection). Diet is minor when compared with transfusions. One unit of packed red blood cells contains about 250 mg of iron so if transfused with two units you would receive 500 mg of iron. I calculated that it would take me 20 days to remove that same amount of iron based on taking 1500 mg of Exjade per day - my weight is about 170 pounds. So if you are getting transfusions, they are your largest contributor to an increased ferritin count.

Side effects can be substantial as some folks have died taking this drug, but your doctor knows what to watch for namely kidney and liver functions. Among these is creatinine, as mentioned by Birgitta. There are specific guidelines for allowable increases in this parameter. The only side effect that caused me grief was diarrhea when at the highest dose prescribed for me - 2000 mg per day. Again that dose is not totally meaningful without taking into account one's weight. Nonetheless I experienced two incidents of uncontrollable diarrhea and then informed my doctor I would not take that high a dose again. I did not have noticeable side effects as doses of 500, 1000, or 1500. I took Exjade for about 20 months. The dosing was discontinued when my serum ferritin fell below 1000 providing it was a time of transfusion independence.

I have no idea how long it will take to lower your count, but I could estimate the number of days if I knew your weight, starting SF count, dose of Exjade and whether or not you are getting transfusions at this time. I plotted my SF vs number of transfusions and learned that you can see a trend in the long term, but things are not too crisp in the short term.

Hope my reply is helpful. Have a happy new year!

[Lisa Z]

Hi Chen-

I took Exjade when my ferritin was 1500. It took me 6 months, almost to the day, to get down to the 300 range. Then, I decided to stop altogether, because it had made me nauseaus for 4 out of the 6 months that I took it. Not to the point of vomiting, but just enough to make me feel lousy all day. All I wanted was to get home from work and go right to bed.

Then, my counts continued to drop and are now in normal range. I did ask my doctor about eating foods rich in iron and she said that food was not a concern, because the amount of iron you get from food, compared to the amount you get from transfusions, it was not a factor to be concerned with.

That being said, I still did change my diet. I only eat read meat once a week now, and its been a year for me since I stopped Exjade. (New year's day to New Year's day!). I also am more conscious about other foods, like cereal. Most "healthy" cereal is all fortified w/iron. So, I do read labels now and try to take in minimal amounts of iron. I know I get enough to get the "daily requirement", but I do try to not go crazy with it.

Yes, your Dr. should keep an eye on some other counts that can be affected by the Exjade and your doc should know what they are. You will also have an 800 number to call the RN from the pharmaceutical company, so you can talk to her any time you have a question or concern. They are very good and available 24/7.

I think I was taking 500 mg a day. I am 115 lbs. So, 6 months wasn't too bad considering what other people are saying about their duration w/the drug.

Overall, it was worth it. I simply didn't want my ferritin too high and even though many people wait unti it is much higher, 1500 was where I wanted to start taking it.

Best of luck.

[riccd2001]

I'm not sure this helps answering any of your specific Exjade questions, but I'll give you an idea of my iron-level situation and what has happened to me.

About two years ago, I had reached 40 transfused PRBC units(about 250ml per bag) and started 1.2 ml/hour sub-cu Desferal to get back from a seurm ferritin level over 2000ug/L down to under 1000 ordered by my hematologist. I lasted about one week before having a severe site reaction and needing to discontinue that treatment. I've been on Exjade since than, but in early September 2010 developed kidney stone problems. Because of the likely side-effect of Exjade on kidney function my hematologist stopped that dosage of treament until Creatinine levels returned to normal. In early December I restarted Exjade at 3/4 dosage, but will probably increase back to full dosage as serum ferritin slowly starts to climb again. There are nasty side-effects using Exjade. They vary from one patient to another but can be reduced with a temporary reduction in dosage IMO. There used to be an easy-to-find on-line Exjade calculator, but Novartis has disabled that handy link.

Last week I had my 138th transfused unit and my serum ferritin level has climbed to 1340ug /L. Besides the date of donation, there is also the variation of actual volume amount which for me has ranged from 238ml to 343ml (a difference of 44 per cent is considerable). For example, if the donation is close to the expiration date, the hemogoblin benefit is overshadowed by excess-iron injection. For me fresh units are preferred but a compatible match is essential regardless of age of donation.

[Marlene]

John could not tolerate a full dose of Exjade or Desferral. Nausea was his problem even at a reduced dose. He would take it for 3 weeks and then take a week off. Eventually, he stopped it because his creatine levels were increasing. By that time, he was able to do therapeutic phlebotomies to get the remainder iron off.

Regarding diet...Normally, you take in about 1.5 mg of iron daily from your diet. Unless you have hemachromatosis (sp), your body actually regulates the uptake of iron from your digestive track depending on your body's iron store. If you are low in iron, it will take in more iron. If your iron is ok or high, will take in reduced amounts. This is because the body hangs onto iron and is not easily excreted so it has a built in mechanism to help maintain proper levels. So, based on that and a discussion with our doctor, we never worried about the iron content of our foods. However, taking vitamin C with meals can help facilitate the uptake of dietary iron. And like Lisa said, foods are fortified with iron and it's probably the worst form of iron.

[cheri]

Thanks all for your input--it will give me a few points to discuss with my Dr tomorrow... I guess, just like everything else, each person's experience is unique!

[cheri]

Just wanted to update that after being on exjade for over a week--happily, no side effects!
Although it says use with apple or orange juice, (which was too much sugar for me on an empty stomach) I checked with the pharmacy, and it can be mixed with cranberry juice (I use unsweetened, organic, about 2tbs with the rest of the 7 oz water) as well.
Although I thought it might thicken upon disolving (does not) and could be nasty tasting, (is not) I am pleasantly surprised how easily I have incorporated it in my morning routine!
I had been a bit concerned about this long term drug, but so far, so good...

[Birgitta-A]

Hi cheri,
Good that you don't feel any adverse effects when you take Exjade ! You know I let the tablets dissolve in water - they taste nothing. How many mg/day do you take? What is your ferritin level? Are you getting any blood transfusions?
Kind regards
Birgitta-A

[Lisa Z]

You do make a good point about hemachormatosis. As it turns out, I have that, which is really the reason I decided to try to watch my diet. But for people w/o that, food shouldn't be a concern, I don't think.

Anyway, I hope I never have to take Exjade again. I've been transfusion free for over 1.5 years now.

[cheri]

My ferration was over 1,000 tested twice last month--my Exjade dose is 1500 mg, 3 tablets in 7 oz water.
I just had 2 units the other day, but had gone 3 weeks without either platelets or blood...now in the nadir phase after round 5 of Vidaza and hoping to be transfusion free for a while after this.
Anxious to see what the next BMB will reveal and hoping and praying for good news!

[Birgitta-A]

Hi Cheri,
You have started with a quite high dose of Exjade if you took 1500 mg initially - hopefully everything will be OK.

Your ferritin level is really rather low which is very positive . As you probably know Exjade have many effects and can increase the HGB due decreasing the oxidative stress in the bone marrow.

The most common adverse effect is increasing creatinine due to negative impact of the kidneys - do they follow your creatinine.
Kind regards
Birgitta-A

[cheri]

Hi Birgitta
I will be seeing the dr for my bmb tomorrow and would like to address the exjade concerns you have on my behalf...(thanks)
What should I ask him specifically?
I believe that my creatine is part of the regular cbcs he's doing..
Re dosage--I weigh about 170 right now, but I feel so good, who cares
I am of course concerned about side effect that this layman can neither see or feel....(then it must not have any right? ) And I am at such a small cancer practice, I'm not sure my Dr sees many either. I think we are walking this road for the first time together,,,which is ok in a lot of aspects. He has done no harm so far...and I am not choosing the transplant route, which would be his first choice...
Please feel free to educate me--I respect your opinion and very grateful that you take time to address my posts personally....(I'm sure everyone here feels the same way... )
thanks....

[Birgitta-A]

Hi cheri,
Thank you for the kind word !

You know when you take cbc you only control blood cells like RBCs (and HGB), WBCs and platelets.

Creatinine is a test for kidney function. It should always be controlled before you start to take Exjade and then once a week the first month - after that it is controlled once a month if your doctor is careful.

Hope all tests including bmb will be OK!
Kind regards
Birgitta-A

[riccd2001]

I had to remind my hematologist several times to add the separate test for kidney function. As mentioned above by Birgitta, simple CBCs don't cover levels for serum ferritin, creatinine, etc.

[Marlene]

Funny.....we also had to remind them about doing a chem panel. We actually monitored blood counts weekly for the first month, and then went monthly.

Also, be aware that when your FE is below 1000 when on Exjade, you have a higher risk of experiencing the vision/hearing side effects. John had his eyes and hearing checked before starting his chelation and then annually after that.

[Divina Buhay]

The postings on this website is rather old so I'm not sure my recommendation will do any good. I am transfusion dependant and I've been on Exjade and Desferral. Both started to ruin my kidneys so the treatment stopped. Since stopping Desferral about 7 months ago, and I have had about 5 transfusions ever since, my ferritin level has not gotten any worst because the doctor suggested that I drink BLACK TEA. I drink 2 bags of black tea 3 times a day and this made a big difference in my ferritin level. My ferritin level was raised in the hundreds with every bags of blood I get. Now when I have my ferritin test done, the increase is very minimal due to the black tea. Why doctor's don't tell us about black tea is a puzzle to me. I didn't know about black tea until I changed Oncologist and this Oncologist seems more concerned with my well being than the bottom line. If I had known about black tea in the beginning of my need for transfusions, I would have a very healthy ferritin level today after receiving approximately 70 units of blood.

[akita]

Dear Divina,

seemingly you are very active in trying to find solutions for your health problems with perhaps some effects on your personal Quality of Life.

Personally i would find it too dangerous, risky, to cancel all your diabetes medicines in generally and especially in your health state with kidney disease and mds.

The last days i searched in the net for you to find some studies saying that it would be an iron chelator as you consider it to be. No, - i could not find proves for that. I found green tea as a natural chelator, but reducing only the iron intake of the body by the intestines, and black tea might function in a similar, if less effective way. I doubt, that this can help to reduce the iron load in your body. And you have got so many transfusions till now, so that you supposedly would need a school medicine cure.. That seems a problem for you, as you had problems with these agents before...?

No, the ferritin level is not really reliable in measuring iron oveload. Its only a fist indicator. For to see, of already your organs have a dmanage, e.g. the liver, you should do more examinations, like measuring the liver iron overload. some people have already a damnage after 20 transfusions, but you have got 70...

Perhaps black tea stabilizes you in some way, But htis does not mean in my view that the iron you got by the transfusions is chelated.

Has your oncologist given another advice too, besides telling you you should drink black tea?

Kind regards, best wishes,

Margarete

[Hopeful]

From what I remember from a nutrition class...

Black tea may interfere with the body's ability to absorb iron *from food*. Calcium may interfere as well with non-meat sources of iron. They're most effective if drunk with meals.

Here is a link that talks about black tea (Please note the safety concerns and drug interactions.) :

http://www.nlm.nih.gov/medlineplus/d...tural/997.html

I think this is different from chelation as it only interferes with the absorption from food and not what is already in your body. Drinking extra milk with your meal though can't hurt!

[akita]

From the same information:

http://www.nlm.nih.gov/medlineplus/d...tural/997.html

"Herbs and supplements that might slow blood clotting
Black tea might slow blood clotting. Using it along with other herbs and supplements that might also slow blood clotting could increase the risk of bruising and bleeding in some people. Some of these herbs include angelica, clove, danshen, garlic, ginger, ginkgo, Panax ginseng, and others."

So if you have problems with your platelets/blood clotting you have to be aware that there is a certain danger for bruising and bleeding.

For a list of drugs, food supplements and herbs you should consider to avoid in case of platelet problems see:

http://www.pdsa.org/about-itp/warnings.html

Thanks Birgitta for the link.

Kind regards

Margarete

[cheri]

Hello All
After being on Exjade for the last 3 months, ferratin level went from 1885 to 1305. That approx 200 units (?) per month....That is the good news...

Recently, my white count has been 1.2, and my platelets really low, yesterday at 13K, so I'll will be transfused today...Hemoglobin seems to decline at a steady pace, so a PRBC transfusion has been needed every two weeks; platelets weekly. I have not been able to resume Vidaza this month, with counts this low. Dr wants to do another BMB on Wednesday 6/22 to see if AML has returned--hopefully not....

I wonder if the cause is Exjade, which comes with the warning of not to take if your platelets are under 50,000, but my Doc says no! It's not that! He has several patients on it....but again, I am alway the atypical one, it seems.
Also, the WBC---could this be the culprit?
(Birgitta, I seem to recall you saying that it affected your WBC..)
Question: Should I lower the dose? Will it still work effectively?

I am planning to now incorporate wheatgrass tablets, as well as black tea, and some dairy products to see if that will have any positive effects on my iron moving forward. This month will be an experiment for me and I will let you all know if making these changes works. I would expect to remain on 1500 Exjade for the next month, but pending an "MDS only" BMB result, would think of reducing the Exjade if I see promise with these other natural remedies.
It seems that I am one one vicious merry go round of "symptoms caused by treatments requiring treatments for symptoms"
Welcome to MDS! This disease makes my head hurt!

[Lisa Z]

Exjade is still fairly new. I know when I was on it a year ago, the RN from the pharma spoke with me every month and I had, as you do, a direct 800 number that allowed you to reach someone 24/7. That in itself tells you that the drug has possible negative side effects. (like all meds).

If it says not to use if platelets are <50,000 I think I would pay some attention to that. Your ferritin is not so high that you can't stop at this point and see if that makes a difference with your CBC counts..... I think that is what I would do. Go off it for a bit, see if your other counts go up and then determine if there is a direct correlation or not.........

[Lbrown]

I take 1500mg exjade a day and have been for about a year and a half (I think - I can find out if it's important). I have 2 units of red cells every 2 weeks and have been for almost 2 years.

I don't think it has affected any counts, but then who's to say? Both now and last spring I have had a low platelet count (98, I know it's not critical) and right now my neutrophil count was 0.4 on my last test. I was almost in a panic and had to remind myself I have no fever or sign of infection...

I had to go off exjade for about 2 weeks recently because my creatinine was too high. It gives me a rash on the front and back of my knees that I can't help but scratch, and I have a rash on my hands. It's so itchy. I have tried cortisone cream and benadryl cream, it helps only a little. Right now I'm also taking Claritin for seasonal allergies. I'm not on any immune suppressants.

I read some small study on how exjade reduces inflammation but I don't believe it. What do you call a rash if it's not inflammation?

I am still on their patient program in Canada but they have never given me a number to call in case of problems, just a number to order more.

BTW - how much does a month of exjade cost you? Supposedly the full cost would be just over $3300 a month. How can anyone afford that?

Deb

[Chirley]

Hi,

My box of Exjade has written on the front....full cost $5652.00...this is for 28, 500mgs tablets.

Regards

[akita]

These are the costs in Euros: Somehow cheaper
http://www.medvergleich.de/Preisvergleich-EXJADE/

Here you see the Exchange Rates:
http://de.finance.yahoo.com/waehrung...R;to=USD;amt=1

Kind regards, Margarete