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.:rolleyes:

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.:cool:

[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 :eek: right now, but I feel so good, who cares :rolleyes:
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. :cool:

[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/druginfo/natural/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/waehrungen/waehrungsrechner/#from=EUR;to=USD;amt=1

Kind regards, Margarete

[Lbrown]

Wow. I thought $3300 was bad. My doctor thinks the price listed is just "marketing". I don't know how anyone affords it, even with insurance.

[Alice P]

My husband has been receiving red blood cell transfusions for a year. His ferritin level in February was 1452. At the end of May it was up to 3890. He is unable to take Exjade because his MDS is high-risk and because his platelets are way below 50,000. Based on research done here on the forums and at mdsbeacon.com, he began taking wheatgrass pills in early June. He started with tablets but, due to the unpleasant taste, switched to 6-400 mg capsules of freeze-dried wheatgrass (the equivalent of 30 ml) per day. By June 23, his ferritin was down to 2613. Today, it is 451.5. These results are much better than expected, and we are amazed at how quickly the capsules worked. The cost works out to about $50/month.

[akita]

Hi Alice P.,

there are existing studies on wheat grass effects, including iron chelation and - in relation to MDS - also touching the question of hematological improvement. For quantities who have been taken in by patients during the studies, please, look on my last posting in this thread. In my opinion this could be problematic point, because wheat grass differs in his (chelating) capacities depending on the age of the harvested grass and the climate where it grows. So you would not be able to be sure that - as you reported - 5 x 400 mg capsules would be the equivalent of 30ml of fresh wheatgrass. In Study 1 reported in the abovementioned thread children from 8+ got 8 x 500 mg = 4000 mg wheat grass tablets daily, and in the studies where they used fresh wheat grass the quantity was from 30 ml 2 times a day to 100 ml. Where did you get the information about the equivalent quantities you mentioned above?
I tried to correspondend with hematologists, recently wrote an email to Dr. Raza Azra with the compilation of studies i found on wheat grass, but i could not get any contact. The institutes in calcutta did not answer and there is no email indicated in the study. Also i tried to correspond with the corresponding author of one of the thal-studies, but did not get an answer. The reason for that could be in the fact that i am no medical doctor (juridical doctor) and that i was not consequent with that correspondence; never sent a "normal" letter..

It would be desireable to get better informations on wheat grass use for patients with MDS who cannot tolerate Exjade.
Could your doctor help?
From where did he/she get the infos about wheatgrass?
Recently i googled it but could not find younger studies.

Please look at the MDS-Study. The quantities of fresh wheat grass juice used there were 2 - 3 time higher than your equivalent. But maybe there are existing more experiences by treating hematologists:The time of the MDS-Studiy presented at the ASCO 2009 was only for 6 months, and many MDS - patients have to take a chelator for a longer time. There have not been reported considerab side effect,- but this should examined in the long term use. Also it could be important to know that "the west" seems to harvest wheat grass - which is known to be helpful for several health reasons- when it is already so old that its iron chelating properties have already decreased. For the best effect it could be helpful to take - if tablets or powder are used - very young wheat grass for the tablets or powder!

Miles to go - miles to go... these where the last words in the presenation to the wheat grass study MDS ASCO 2009. I guess the Indian Institute in Calcutta, member of INCTR would be very happy to get funds to be able to develop a "real" iron chelating medicament with the active wheat grass components, for which further chemical analyzes seem to be necessary. As long as the composition varies, such tablets, powder, capsules and the juice only are sort of natural products; alimentation..

Hope i could help you

Akita

http://www.thalassemiapatientsandfriends.com/index.php/topic,3750.0.html

[Greg H]

Also it could be important to know that "the west" seems to harvest wheat grass - which is known to be helpful for several health reasons- when it is already so old that its iron chelating properties have already decreased. For the best effect it could be helpful to take - if tablets or powder are used - very young wheat grass for the tablets or powder!

Hi Margarete!

I noticed, when buying US-grown wheatgrass that, as you say, it tends to be significantly older than that used in the studies. But I haven't seen studies that indicate the chelating potential decrease with age. Have you run across articles that suggest this?

Thanks for your posts on the subject. They are always great food for thought.

Greg

[Alice P]

Hi, Akita -

I didn't do any scientific calculations to determine how many capsules John should take. I relied on the description I found at GNC.com for Eclectic Institutes Freeze Dried Wheatgrass that stated that 3 of their capsules are equal to one ounce of fresh juice. Since the India study used 30 ml of juice, and 30 ml is approximately equal to 2 ounces, I came up with the 6 caps/day dose. Our hematologist was unaware of the chelating properties of wheatgrass, but he is thrilled with the results we've experienced.

Alice

[Alice P]

Ha! I thought I'd better recheck my calculations after posting (should've thought of this before), and it turns out I've been wrong. 30 ml is about one ounce, so three of the capsules daily should do the trick. Six sure did work quickly, though!

[akita]

Hi Greg,

on Slide 10 of the presentation belonging to the MDS Asco Abstract 7012 you can see the changes in iron chelating qualities of fresh wheat grass in the process of growing.

http://www.asco.org/ASCOv2/MultiMedia/Virtual+Meeting?&vmview=vm_session_presentations_view&confID=65&sessionID=3112

Slides 18 and 19 show a comparison of the iron chelating qualities of DFO and wheatgrass.

I tried to find out the theoretically best "age" of fresh harvested wheatgrass for the purpose of iron chelation. Believing that the content of the presentation is realistic, i asked different sellers of tablets or powder, how old their wheatgrass had been at the time of harvest Only one seller (an Indian, mentioned in the Thalassemia Patients and Friends Forum linked above) told me that his wheat grass was harvested when 5 - 7 days old. This seller has delivered wheat grass tablets to Indian hospitals for the purpose of studies, as mentioned in one of the studies and also assured be him (you can call him by phone) His wheatgrass tablets and powder are more expensive than the products taken from older wheatgrass. (There exists an old Indian tradition with wheat grass use.

A German seller proudly told me that his wheatgrass tablets had been produced from wheatgrass "in the jointing stage" and it would have been 17- 21 days old . But "in the jointing stage" it should be already 7 - 10 inches or 17,78 - 25,40 cm high as described in the following link, and so supposedly older than the wheatgrass used for the Indian MDS-Study 2009.

There seems to be still no knowledge "in the west" among the sellers concerning iron chelating properties of wheat grass; They sell it for other health purposes and take - in my experiences from phone calls and web-informations - older wheat grass as used in the Indian MDS Study for that.

"Jointing stage" : http://www.nutrigrass.com/jointingstage.htm

Thanks for the roses, dear Greg. Hopefully that i could answer your question.

Akita

[slip up 2]

we have gotten our frozen wheatgrass from Dynamic Greens, they ship frozen...

[akita]

Hi Alice P.

"Since the India study used 30 ml of juice, ...."

You have seemingly read this on the MDSBeacon Webside. Please notice: In the abstract they write about 30 ml of juice daily; but in the presentation, Slide 7, a quantity of 30 ml fresh juice 2 - 3 times daily is indicated. No pure juice, but in "aqueous solution" containing the juice made from 5 grams of leaves each including the stems. Here in the presentation the leaves are reported to be 7-8 days old.

It would be useful to get precise details from the study authors...

akita

[akita]

@ slip up 2:

On the webside of "Dynamic Greens" there is a link to the laboratory which made the analyses. I suppose,these analyses have not been undertaken to find out the iron chelating qualities of wheat grass, but instead the nutritional components, vitamins, enzymes; precious for the mainstream, but not specific for iron chelating qualities..

The indian MDS Study reports that "Wheat Grass juice consists of two noble active ingredients with structural resemblences of chlorophyll, but do not have Mg +2 in a central position of protoporphyrin. These two ingredients might be responsible for iron chelating activity." (Slide 12).

It seems not to be easy to find out which ingredients exactly do the iron chelation; and they have not been tested exactly. This costs money.. It is a long process from a natural product to a medicament approved by school medicine, because it is necessary to know the exact active components and their concrete quantity in one pill etc. to undertake scientific studies...and, one day, finally obtain a registration for that..

[Greg H]

This seller has delivered wheat grass tablets to Indian hospitals for the purpose of studies, as mentioned in one of the studies and also assured be him (you can call him by phone) His wheatgrass tablets and powder are more expensive than the products taken from older wheatgrass. (There exists an old Indian tradition with wheat grass use.

Hi Margarete!

Thanks much for the link; I remembered seeing this before, but had lost it. Now I have done a screen capture of the slides so I can save them. They do show a distinct advantage for the younger plants.

And I have found from Western sellers just what you have: they harvest in the jointing stage, presumably because they are interested in values other than chelation.

I have considered growing my own wheatgrass, but I lack an appropriate space that would be suitable year-round.

Take care!

Greg

[Lbrown]

According to wikipedia, it is siderophores that bind to iron. That's what desferal is made of, apparently.

Looks like it could be dangerous for people with low iron to take a lot of wheatgrass.

Deb

[akita]

Hi Deb,

it would be really necessary to get more informations from the scientists who undertook the studies on wheatgrass - also for palliative use in other disorders, for thalassemia and other health reasons. I suppose your question has been answered by medicine. Also at least the institute in calcutta which undertook analyses can give more informations which are necessary to undertake further studies in the west. I found an article on MDSBeacon yesterday (thanks to AliceP.), seemingy interested in more details to the MDS-study on wheat grass. My computer did not function sufficiently, but i hope to be able this weekend to transport my informations resp. collection of studies on wheat grass to the authors of the article.. Wheat grass should not become an object of confusion between the patients and it could be helpful to repete the indian MDS-study on wheat grass.

[akita]

Hi Greg,

there are a lot of videos on home-growing of wheatgrass on youtube!

The use of wheat grass has a very old tradition especially in India, Ann Wigmore only gave it a revival in the west in the 1940ies (?): I have ordered her main book on Wheat grass, and it does not inform about the use of wheat grass for iron chelation. I guess, Ann Wigmore did not know about this function of wheatgrass and could not know about the nedd for it, as iron chelation for thal- and Mds-patients seems to be younger

There are existing older articles on wheatgrass, not focussing on iron chelation or even mentioning it. It seems difficult to get approach to these articles. Rests the question, if it is necessary to reread them now, as they probably do not examine the components recently found by the ASCO-MDS-study.

Kind regards, Margarete

[LeAnnD]

I hope this reaches someone. All the other posts are so old that I'm not sure if this site is reliable!

I have MDS, Less that 5% blasts, RARS. Dr says I am low risk. I get monthly PRBC. I tried Aranesp injections and they didn't work so I take no medications at this time. My last transfusion was Feb. 12, 2016.

I am currently on every 3 months visit to my hematologist and will go back on March 3rd. The last visit in November the Dr suggested the possible use of Exjade if my ferritin levels continue to rise. At that point they were at 972. I realize this is not a dangerous level but with 3 transfusions since November I expect they will continue to rise.

I am a kidney donor so I am left with only one kidney. Like others I am concerned that this drug will affect my creatinine levels and I cannot afford at this point to start having problems related to kidney damage. Has anyone else had any experience with this problem? Also like others I have heard that Wheat grass is a natural iron chelation and have been taking 1200 mg capsules of wheat grass daily for the past month and a half. I am interested in seeing if it will have affected my ferritin levels at all. If there is only a slight increase in my levels then I will know it is working a little bit.

I would really appreciate hearing from someone on this subject to see if anyone has face this particular issue. Thanks in advance!!
LeAnn Duke

[Marlene]

Hi LeAnn,

I can certainly understand your concerns on Exjade with having just one kidney. I don't recall anyone in your exact situation and all I can offer is the what John experienced and how we dealt with some of it.

Even though John had both kidneys, they got pretty compromised from his treatment. The anti-fungal and antibiotics took a toll on his kidneys and liver. He also had a very high iron level from numerous transfusions which also takes a toll on your organs. So he really had to watch how his kidneys handled the Exjade.

Exjade was very difficult on him. He could never tolerate a full dose and would have to stop every three weeks and take a break. He would get so nauseated by the 3rd or 4th week. Many times, with the iron chelators, side effects are dose dependent and just by reducing the dose, they clear up. So before beginning any iron chelation therapy, John would get his baseline blood test for liver and kidney function and eye & hearing exam. From there, he would start on a lower than normal dose for his body weight. He would stay on that for one month, get his blood work checked and the up the dose until he got to his tolerable dose.

He was able to be on the Exjade for quite a while without it impacting his creatinine levels. But eventually, we saw his creatinine start to creep up. When this happened, he would take a break until it normalized and then start back up. But we saw that his kidneys were not happy with Exjade for much longer. Even after reducing the dose. Luckily, his HGB got high enough that he was able to stop it and start therapeutic phlebotomies.

In your case, I would consider starting on a low dose to see how you do. Maybe monitor your blood work weekly for the first month then monthly after that. You may not be able to reduce the iron but instead keep it rom rising. If I recall, they usually don't consider starting chelation until your FE is at or above 1000 for two or three test results. But that may be old thinking.

Marlene