Exjade and Revlimid

[krishananth]

Hi,

My dad has been on transfusions monthly 3 pack cells for the last 1 year now. We are from India and the indian version of Revlimid is avaliable now here. So his docs have recommeded him to take this. But then his ferritin levels are >1650 and hence we are forcing him to start on Exjade.

Please could you let me know from your experiences whether both revlimid and exjade can be taken together. hope there is no harm and no side effects. Also one of the docs was mentioning that exjade works only after 4 months. Is this true about exjade?

Thanks and Regards
Sandhya

[Mary4Mike]

Hello Sandhya,

I wanted to let you know that my husband has been taking Exjade for 16 months with a beginning ferritin of 2500. I would think that it would begin working immediately and continue for as long as he is on it. They only check his ferritin approximately every 4 months. His has come down everytime it is checked. The last time it was 1100. During the 16 months on Exjade, he has had 7 more txs. He has also begun his second month of Revlamid. He has had no side effects from either. (Of course we don’t know the long term side effects, but having iron overload can have serious side effects of it’s own.)

I am not a doctor, but I hope this gives you some peace of mind that other doctor’s are prescribing both Revlamid and Exjade.

Blessings to you and your dad,

[Alice S]

Hi Sandhya

Mom started Exjade June 7, 2007 with 500mg -ferritin was 6800 on July 3, 2007 Ferritin was 6400. As I have written in another post, dosage for her body weight is 1800mg. She also received 4 units of blood (in South Africa a unit is about 400 to 450ml)in June. Mom has no side effects from this dosage.

Mom was told it works immediatly, further, she had to miss a few days due to delivery problems, her Hematologist told her that this was not a problem as it would continue to work for a few days. I should have an update from her soon, as she was in hospital yesterday and today for another 4 units of blood. Test for ferritin are expensive so it will be awhile before she has another test.

Iron overload is more dangerous as the iron is stored in the liver, heart and on some glands in the brain. The heart then becomes enlarged results in congestive heart failure. One has to chose the lesser of the two evils in this case without always knowing what the outcome will really be.

Take care, hope this helps.
Alice

[Lydia]

How old is your dad? There has been lengthy discussions on this site about revlimid not working with exjade. Exjade has not been researched for people over 65. Revlimid was working for mom until the exjade was added. Not only did the revlimid stop working, but her white and platelet count went way down and didn’t come back up – that is until they stopped the exjade. After 3-4 months stopping the exjade the revlimit has started working again and she hasn’t had a transfusion for 3 months! When she was taking the exjade she was trans. every two weeks – the shortest time. Please search this site with all the previous discussions we have had on this subject. Unless your father is under 65.

[Frankie]

I’m 65
My doctor was about to put me on Exjade (I’m already on Revlimid) and I refused it after reading this board. My feritin level is 1500. I haven’t had a transfusion in 14 months.
Before the Revlimid, I was receiving 2 units of blood every other week and was on Desferal in IV form….once a week. I hope I’m doing the right thing.

Frankie

[Mary4Mike]

Frankie

I am assuming you have been on Revlimid for 14 months. How soon after starting it did your red counts start to rise? Where does your HGB stand today? Do you feel pretty good?

I am curious because my husband is on month #2 of Revlimid. So far, no txs, but his HGB has been staying at 9.1…too high for tx, but too low to feel all that good. He has also been on Exjade for 16 months. His ferritin is down to 1100 from 2500. During the 16 months on Exjade he has had 7 txs.

Now, we are reading that Revlimid doesn’t work while taking Exjade. I would be curious to know if there are any documented reports on this.(you’d think the doctors would know about this)

Thanks for your input,

Mary

[Frankie]

Yikes…I never heard that Revlimid might not work while taking Exjade. sigh

I saw a rise in my red count within 2 weeks. My HGB is at 10.0 as of the beginning of this month.
Hematocrit is at 31.0…… RBC is at 4.04.

I feel pretty good….no more panting aka air hunger. But I do have side effects from the Revlimid….dizziness and diarrhea mainly.

Frankie

[Frankie]

I guess I should add that these numbers were low when I started in May of 06.

They were:
RBC 3.24
HCT 26.7
HGB 9.1

Frankie

[krishananth]

Hi All

Thanks for the posting and sharing your experiences. I have also read out this to my dad and hoping that he will consult his doc on Exjade.

He has started Lenalid, Indian version of Lenalodimide which is Revlimid and he is having itching all over. Is this the common reaction of revlimid?

My dad is currently 58 years and has been healthy i.e. used to play a lot now stopped. He has been very active all through and even now is continuing his regular office work and weekends spends time with his grandchildren and also once a month he visits the society which is servicing poor people who have a blood related disorder. He was diagonised for MDS in July 2006 (a year now) and since then been on supportive care. The MDS was classified as MDS/MPD with myelofibrosis. Blasts were 8 – 9%. Platelet counts as low as 6000 just last week. He had a single donor platelets(SDP) but still his counts are 6000. we are wondering if the reading is incorrect and whether the SDP was not proper. We are extermely concerned about his low platelets.
Any suggestions to increase platelets? Has any one had instances where platelet transfusion was done still no increase in count?

[Alice S]

Hi Sandhya

My mother had 5 platelet transfusions in two days, with absolutely no increase in counts. Eventually last blood test was done whilst the last of the platelets were still being transfused, no reaction. This confirmed that Mom’s body was rejecting (destroying) the platelets as soon as they entered the body.

Matching donor platelets can be used, but it does not mean it will work, I have read that a body can destroy all platelets – even it’s own. I checked this information with a doctor – she confirmed this as MDS is amongst others an auto immune disorder. Mom was given medication Cyklokapron for a short time.

There is a website (PDSA)www.pdsa.org for persons with platelet disorders with information on what medications lower platelets, but most important is the information on which foods and supplements are to be avoided. (In the Home Page, open ITP Info and then Warnings) – I have trouble finding it so I have just the warning page on my favourites.

Can’t help on the Revlimid/Exjade issue as Mom only takes Exjade and no other medication.

Having read the posts on Exjade on the forum I would just like to add that the danger of damage to the body form iron overload should not be taken lightly. There are no straight answers to questions with MDS, we always look to the lesser of the two evils – iron overload versus exjade. As always, this will not work for everyone. So each persons needs to make an informed decision for him/herself.

Take care and I wish your father all the best, he is still young, keeping busy can be a great help.

Alice

[Frankie]

Yesterday, I told my doctor about the possibility of Exjade working against the Revlimid.
He would like medically published info on this….especially since I am 65.
Any ideas?

Frankie

[Mary4Mike]

Frankie,

My husband saw his hemotologist this week for his monthly check up and we asked him this same question – about the possibility of Exjade effecting the efficacy of Revlimid. He said there isn’t any data on it. We asked because of what we have read on this forum. Mike will begin his 3rd round of Revlimid and his counts have not rebounded since the initial drop when he first began. He is going to ask the doc Monday about going off Exjade for awhile. He has had no transfusions since 6/6/07 and his ferritin was 1014. There is a 4 to 5 month trial time for this expensive drug and we don’t want to do anything that will counteract it’s effects. We want to know if it will really work.

Are any of you out there that have taken both Revlimid and Exjade at the same time and still had good results from the Revlimid? Maybe we are the ones that will have to come up with the “data”.

Please respond.

Mary

[Frankie]

Hi Mary

Thanks for responding.
Evidently my doctor isn’t going to go by what people post here but by cold, hard evidence. :::shrug:::
I’m still not going to go onto Exjade until I know more. I think it’s because of my age…over 65. Also he doesn’t fight me on that. I have an eye problem ( can hardly see out of my right eye ( central vein retinal occlusion). Who knows…maybe that was brought on by the Desferal….. I was on for years and years. Plus I have hearing loss.

Frankie

[Mary4Mike]

Hello Exjade and Revlimid users,

Today, I received a message from an advocate for our health insurance. She was looking for information about the Exjade/Revlimid issue. She contacted the makers of Revlimid and they said that no studies or research have been conducted. I will be in contact with her on this matter, especially if she is able to find new data. I am hoping she contacts the makers of Exjade. If I learn anything new, rest assured I will pass it along to all of you.

Best wishes,
Mary

[Frankie]

Thank you so much, Mary. I appreciate that.

Framkie

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