Iron overload, need Exjade

[jga_socal]

Hi. My ferritin in 2,743 after only 21 pints of rbcs over a year. I’m starting to set off metal detectors in the airport. So, I guess it’s time to start Exjade. So far my only vice has been Procrit. I searched the forum for exjade and found that patti seems to have more actual experience with it than my doctor. In fact, quizzing my docs nurse last week, I found that they have had only one other patient go on Exjade. I made an appt with my 2nd-opinion doc up at City of Hope Hosp for April. Meanwhile I’m hoping Patti can chime in with any updates concerning her mum-in-laws experience with Exjade. Mung beans? Jujubees? How did that work out? Patti, how is your mil currently doing in regards to her Exjade use?
Thanx, Jim

[Arlene]

jga_socal, I am not Pati, but my husband was on for 6 months and it worked very well. His main side effect was he did loose a little of his hearing. He was already a little hard of hearing, but it did seem to get worse. He would take it in the morning and he then stayed pretty close to home because of the diarrhea that would start shortly after taking it (lasting a couple of hours). He was around 2600 when he started and it dropped to around 1000 in 6 months. He now has blood drawn off every month or so because his HCT is pretty normal. He had labs drawn regularly to watch his creatine and liver (he was also taking cyclosporin at the same time which effects the same organ) but they always stayed pretty normal. It is a good drug. Arlene

[covergirl]

Jim,
I am on my 2nd round of Exjade. This time is working very well. Last go round, it was suspected for making my WBC’s go down to scary levels.
Since beginning again, I have gone from about 2100 to 1600 in 3-4mths. NO side effects, not even a rash(knocking on wood).

Best wishes to you.
–cheryl

[patti]

Hi Jim,

You’ve given me tall orders here to try and keep this all straight for you.

First, Exjade works very well. I think using some common sense precautions will make your life easier (unless you have to fight with a doctor over this). I would recommend you start at 250mg and do that for 4 weeks. Then go to 500mg. We found that the Exjade worked just fine at 250mg – although slow – but we didn’t care. It was working. At 500mg it felt like it was working at lightening speed. And that was with mom transfusing every 2-3 weeks. Mom’s doc wanted her to start at 1200mg which we thought was nuts sense no one knew how she would respond to it. One person on this forum started there and ended up in the hospital with the dehydration from diarrhea. So, be careful about how high you start. We just flat out told the doctor what we would do and didn’t care what they thought. They still gave us 1200mg worth for the month and mom just took what we had decided on. We were satisfied with the rate of drop in ferritin at 500mg and that would be my recommendation of a good place to stay if it works for you. If it doesn’t (since everyone is different) then it would be wise to only go up in 250mg increments. This gives your body time to adjust to it and should avoid any adverse side effects.

Mom did develop a rash around her mid section after being on it for two weeks. We stopped the Exjade for two weeks and went back on it slowly and she didn’t have any trouble with it after that.

If you’re white cells are not affected by your MDS then this next stuff may not apply – but tuck it away just in case. Mom had very few white cells to begin with. We did notice that on 250mg of Exjade her total white cell count dropped 200pts. That drop affected her neutrophils totally. They also dropped 200. On 500mg her white cell count dropped 400pts. Same thing – it was all neutrophil drop. So, that said, it *may* drop your white cells some. You’ll just have to watch this and see.

We cannot definatively say it was the Exjade that dropped her whites but when she went off of it her whites would come back up to their “normal” level (which was about 1200). Her neuts ran around 800 normally so you can see where a drop of 400 could be significant for her. We stopped and started the Exjade multiple times over 6 or 8 months (can’t remember exactly right now) to test out different things. In the end, we stopped the Exjade because her whites became critical. We could no longer afford to lose any of them. But they have never recovered. She now has 800 total white cells and they are all lymphocytes. She has no neutrophils, etc. She has been this way for over a month now. Already had one stint in the hospital for an unknown infection and she’s now on prophylactic antibiotics 3 times a week in an attempt to stave off any bacterial infection. If she gets something viral there will be nothing we can do about it. Right now her ferritin is 3600 and we are not worrying about it because we have bigger fish to fry now. I am somewhat of the opinion that the Exjade caused some damage to her white cells that we could not undo. But there’s nothing scientific about that – just looking at clinical data. It’s possible it was just natural disease progression also. It’s just that prior to that she was holding and doing okay.

Hope this helps some. I would recommend once your ferritin hits 1000 that you stop the Exjade until your iron goes back up again. I think anytime you are on a drug you run the potential of causing damage elsewhere.

Oh – you asked about the mung beans, etc. Mom continued to take the mung beans, and jujubees and still is. I will say her ferritin isn’t rising as fast as one would expect since she stopped doing the Exjade. Have no clinical data to prove these are helping. Just that she’s still taking them. She now boils the jujubees into a tea for 5 minutes or so and drinks the tea and eats the softened jujubees. This seems to be better for her since she’s older.

Feel free to pick my brain if you think of any other questions.

patti

[Naomi]

Jim:
I started out on 1750mg exjade and it was lousy. It tasted terrible and I did not want to affect my orange juice in the mornings. It did not do well for me. Increased the diarrhea, lowered platelet counts and I am still having trouble with them. I also had c-diff while taking the exjade.
My doc said he had more patients with trouble with it also.
I am now on desferal pump and it is not too bad. It seems to be taking the counts down, but the need of rbc txs keep it going

Naomi

[jga_socal]

Thanx all. First off, I didnt mean to exclude others from commenting. When I did a search on exjade it seemed like pattie was alays involved in every result.

My doc always answers questions with the bare minimum effort. I cant figure out if he is too busy to go into detail or he just doesnt know. He never did phone me back since I left a message last week. I got the Ferritin results 3 weeks ago while I was getting xfused. My doc was not around cuz I was in the chemo room. But you could see the anxiety in the nurse when she gave me the report. She knew the number was high but did not want to alarm me. I get the distinct feeling that the nurses there know a lot more than they will share with the patients. I’d love to pick their brains but they are concerned for their jobs.

I just watched 2 videos on iron overload at the aplastic.org site HERE . Pretty informative. Dr. Coats in video one says it takes years for IO to cause organ damage. But then he admits that is knowledge gained from their experience with youths who have other illnesses that require a lifetime of xfusions. They really dont know at what point irreversible damage occurs in older people.

I also downloaded the annual definitive paper on MDS published by the National Comprehensive Cancer Network (NCCN). That pdf is HERE . A couple points on this paper. Most of the iron overload talk is on pages MS-5 and MS-6. From what I can tell, my doctor, if he was following the MDS treatment guidelines, should have been monitoring my Ferritin must sooner than he did. He only ordered the Ferritin test because I kept asking him about it since last summer.
My second opinion doctors name shows up on page 2 of this pdf as a panel member. Maybe I’ll just have to start depending on her.

Dr. Coats says you retain .5 gram of iron in every pint of blood you get xfused. So, I’ve had around 11 grams.

The nccn paper and other sources have mentioned an intriguing result of IO therapy. Studies have show that a small group of people, once their iron overload is brought under control, their bone marrow kicks in. Some of these people become xfusion independent (eg: pg MS-6 of the nccn paper). This result leads me to wonder if perhaps MDS can sometimes be the result of other problems, perhaps long term undetected iron overload.

Pattie, sorry about your mum-in-law. And, thanx for the feedback from the Naomi and the other posters.
Jim

[patti]

Jim,

I think, if I had a doctor like yours I would be finding me another one. This is coming from the person who went through 3 doctors for my MIL before I found one I felt like would listen, would not patronize and would do what we wanted even if conventional medicine said not to. When you have a doctor that doesn’t answer questions and isn’t monitoring things for you they just aren’t doing their job. My feeling is this guy must not have much experience with MDS.

There is some controversy about when iron causes damage to the organs. From everything I’ve read it is most damaging to the very young and very old. My MIL falls into that category. We waited a very long time (she was well over 2500)because we kept hearing on this board that it takes years for iron to do its damage. I did check with mom’s doc on this and she said there seems to be this age range where it takes longer for the damage to occur. Somewhere between late teens and the sixties. She said before and after that damage seems to happen quicker. Don’t know if that’s any help.

Do keep us posted on what you do and how it works because the expreriences we pass on here will help everyone in the long run.

all the best,

patti

[helenr]

Jim

My husband (68 yrs) used Exjade for one month with no obvious side effects BUT when he had his monthly liver and kidney tests ( as recommended) he had drug induced liver damage. The research paper only covered younger patients and only 2 in 1000 had liver problems. When the liver was back to normal he tried again with 250mg and after 4 days his liver was reacting again. He is back on desferal again.

If you are not young I would follow Patti’s advice. We did, but because there were no side effects We increased the dose sooner. Ask for weekly liver and kidney tests as a safety measure.

Good luck, Helen

[bety]

Dear Patti,

You mentioned that your MOL is on prophylactic antibiotics because of her low white count. I thought that antibiotics (along with many other drugs) tend to reduce the wbc. It sounds like a “catch 22” situation. Also, would antiviral medications (such as acyclovir) help with mds in the case of a viral infection?

My husband may require EXJADE soon. I really appreciate your posts on this topic as well as your other posts. This forum has been so very helpful to me. Up to date personal experiences are invaluable in trying to understand this dreadful condition.

[patti]

Bety,

I had not heard that prophylactic antibiotics lower white count. That doesn’t sound right to me. But at this point, it wouldn’t matter, my MIL has zero whites anyway. At this moment she is at home fighting fevers left and right inspite of being on both Bactrum DS and Levaquin. For her, it is only a matter of days probably before her body gives out to the infections.

Yes, acyclvar can help viral infections but if someone’s whites are so low they are riddled with infection throughout their body, nothing they take will help. It depends on how high the white cell count is.

Patti

[bety]

Patti,

I just checked both Bactrum DS and Levaquin on the internet re side effects. Even when given prophylactically, they can lower wbc’s and platelets. Most drugs have side effects and should be looked into.

Again, your MIL requires antibiotic protection. There are side effects. The antibiotic treatment probably outweighs any possible negatives. Another unpleasant “catch 22” situation.

I am glad to hear that with your MIL’s treatment, she has made significant progress. She is lucky to have your constant help, support and input.

I have followed your posts closely and used your recommendations in trying to help my husband’s low counts.

[Terri]

Bob has been on Levaquin continuously as well. His Whites are abnormally HIGH. so I wish the Levaquin would bring them down some. Currently doctor is watching him closely to see what treatment will be next he may consider increasing the vidaza doseage. Whites are in the 50’s
He has had these glitches before at one point the whites were up to 77 but that was around the time of the brain bleed. After pulling through that they got down to norm. He does have blast in the blood and marrow. But the vidaza seems to work on him so Dr is watching as I said closely we are seeing him personnally again in a week as he will view Blood slide smears every time he sees bob to view the cells etc.

Bob and I were just talking about the Levaquin and other supplements he is taking, don’t want to stop anything because something is keeping him strong

[Eric K]

When my ferritin level reached 1400, I started on 750 mg Exjade. I’ve been on it for about 6 months and ferritin has gone down to about 900. Normal ferritin level is about 450, I think.

At first, I mixed the Exjade as prescribed… add it to orange or apple juice and then drink it. The problem is that the Exjade makes the juice look white like you just added milk to it. The Exjade doesn’t seem to have much taste, but it’s gritty and doesn’t dissolve in juice very well. My solution was to put about 1/2 inch of black coffee in a cup, add the exjade, and drink it down. The exjade quickly dissolves in the coffee and the white color makes it look like coffee with cream. When the coffee cools down a bit, then just gulp it down and ignore the fact that it taste like regular coffee with sawdust. I then follow up with a full cup of coffee with some Baileys which taste much better and also gets the last bit of sawdust that was left in the cup.

I haven’t had any reaction regarding blood counts but I have had occasional diarrhea or nausea but those could also be from the Revlimid or the Procrit.

Eric K

[Author]

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