Has anyone tried this oral iron? If so, how many do you take? with or without food? Know any professionals that recommend it? Friends with success with it? What were your levels before and after taking it?
Thanks so much!
I take it and it is very effective. The most one can take in a day is 3. I average 1 or 2/day and my levels went right up to 30’s. You can take with meals, other meds and at any time of the day except too close prior to a dialysis tx or on a tx. Make sure your rinsebacks are good as blood loss will knock your iron down.
Jane,
Thanks so much for taking the time to reply to my post! It is so hard to find someone who has actually used this product or someone who isn’t new to it - i.e.:doesn’t know how it is going to work on them yet.
I can’t stand the ferrous forms and carbonyl iron is just as bad. They make an 6month old muscle injury of mine swell like I got hurt yesterday. Strange, I know…I liked the Proferrin, but quit taking it b/c I was afraid the pill was too good to be true - we play Russian Rhulett everytime we try something new. There is just not a lot out there to prove that this product really works because it is so new.
So, what were your levels(hemoglobin and ferritin) before and how long did it take you to get to the after of 30’s. How did you find out about Proferrin? Are you on Forte or ES? Do you know others who are happy with it? Do any professionals you know swear by it and prescribe it to all their patients? Only one or two a day!!! Are you sure that is all it takes!!!
My doctor didn’t know about it - I brought the ad to her!
Thanks so much for helping!
I first found out about Proferrin through my dietitian who probably got samples from a drug rep. I’m guessing that the rep educated her on the benefits of this new form of iron, heme iron. I called the co. that manufactures it and a knowledgeable person gave me some more details and offered to send me a pack of info including copies of research articles. I became convinced that this product was appropriate for dialysis patients after reading the info.
I had to work with it at first as my iron sat zoomed all the way up to 60 something! It’s been awhile, but that was on 3 pills a day, the maximum recommended in a day. At first, I had been taking 1 or more too close to dialysis or on dialysis and it seemed to not be working well. It was dialyzing out. So, I called the co again and they recommended I take it several hrs prior to dialysis or after txs. It’s a good idea to split up the dose throughout the day for max. effectiveness. But it is ok to take as many as 2 at time if you forget to split the dose some days. I found that switching between 1 or 2 a day got me close to an iron sat of 25-30 which is what I wanted. If iron sat is high enough it works with epo to produce red blood cells, thus hgb/hct will be good.
I take the ES variety as I have enough folic acid in my renal vitamin. My neph was not up on this form of oral iron and did not think it would be absorbed by the gut as renal patients have problems in this respect he said. Everyone on my team was surprised at the results I got. I had wanted to see if oral iron would work for me as I did not want to make extra trips to the clinic to get IV iron since I do dialysis at home and why take it IV with extra needles if I could simply take it orally.
My routine is to take 1 with breakfast and 1 after tx on days I take 2. There is no constipation with this form of iron, but if taken on an empty stomach causes an acid feeling. When I take it without food, I chase it with 1/2 a Tums, which I take anyway for calcium, and this totally relieves the acid effect. Also, I had no other side effects. And as I said, it is important your rinsebacks are good as blood loss will cause one to require more epo which eats up iron. Suggest you contact the co as I did. They are very helpful and think you will get the assurance to try their product as I did. Glad to be of help.
Thanks for replying again, Jane. I did call the co., but they didn’t send me anything when I asked them to. Hmmm.
What did you mean by your sat.? Saturation? TIBC and UIBC? I thought that was good to have up high?
Thanks.
[QUOTE=Jane;15995]I first found out about Proferrin through my dietitian who probably got samples from a drug rep. I’m guessing that the rep educated her on the benefits of this new form of iron, heme iron. I called the co. that manufactures it and a knowledgeable person gave me some more details and offered to send me a pack of info including copies of research articles. I became convinced that this product was appropriate for dialysis patients after reading the info.
I had to work with it at first as my iron sat zoomed all the way up to 60 something! It’s been awhile, but that was on 3 pills a day, the maximum recommended in a day. At first, I had been taking 1 or more too close to dialysis or on dialysis and it seemed to not be working well. It was dialyzing out. So, I called the co again and they recommended I take it several hrs prior to dialysis or after txs. It’s a good idea to split up the dose throughout the day for max. effectiveness. But it is ok to take as many as 2 at time if you forget to split the dose some days. I found that switching between 1 or 2 a day got me close to an iron sat of 25-30 which is what I wanted. If iron sat is high enough it works with epo to produce red blood cells, thus hgb/hct will be good.
I take the ES variety as I have enough folic acid in my renal vitamin. My neph was not up on this form of oral iron and did not think it would be absorbed by the gut as renal patients have problems in this respect he said. Everyone on my team was surprised at the results I got. I had wanted to see if oral iron would work for me as I did not want to make extra trips to the clinic to get IV iron since I do dialysis at home and why take it IV with extra needles if I could simply take it orally.
My routine is to take 1 with breakfast and 1 after tx on days I take 2. There is no constipation with this form of iron, but if taken on an empty stomach causes an acid feeling. When I take it without food, I chase it with 1/2 a Tums, which I take anyway for calcium, and this totally relieves the acid effect. Also, I had no other side effects. And as I said, it is important your rinsebacks are good as blood loss will cause one to require more epo which eats up iron. Suggest you contact the co as I did. They are very helpful and think you will get the assurance to try their product as I did. Glad to be of help.[/QUOTE]
I am a little confused. At first you were taking 3 and that was too much because of sat. levels. When you say it wasn’t working with dialysis when you were taking 1 or 2, did you mean the sat level was still up or your levels of hemoglobin and ferritin weren’t going up?
Thanks, Jane
I meant I had to keep working with the dose and the timing of the dose. I realized I was taking the pills too close prior to dialysis or on the tx so they were being dialyzed out. So, thats when I got the suggestion from the co. to space them out away from dialysis. I then took 3 a day and iron saturation went to 60. So I went to 2 a day and was in the 40’s. ONe a day and I was at low 20’s. So I alternated taking 1 one day and 2 the next and that brought me to about 30. If iron sat is good and epo is given on time, the other numbers will be good.
I have learned that when it comes to meds it is important to get the right dose and the timing matters. Also, some meds should not be taken with other meds. I have had numerous nephs and dietitians and not one of them has ever informed me of the correct time of day to take a med. They often don’t watch the dose I take carefully and don’t advise me to adjust when necessary. So, when I take a new med I always try to find literature on it, go to the website or call the co to see if they will provide info, and bring the info to my neph.
Sorry you weren’t able to get the info this co sent me. Maybe they have a new policy now of not sending out info. But I spoke to a person up there on a number of occasions who sent me the package of info and helped me to figure out how to get the dosing correct. Maybe you got the office person who sends out the orders. Try asking to speak to the scientific ppl there who do the educating. Whether you get anyone or not, you could try the product for a couple of months and if it works for you as it did for me, I think you will be very pleased. I recall their articles stated that when tested on dialysis patients it worked well with most patients and I was glad to see it worked with me.
[QUOTE=Jane;15998]I meant I had to keep working with the dose and the timing of the dose. I realized I was taking the pills too close prior to dialysis or on the tx so they were being dialyzed out. So, thats when I got the suggestion from the co. to space them out away from dialysis. I then took 3 a day and iron saturation went to 60. So I went to 2 a day and was in the 40’s. ONe a day and I was at low 20’s. So I alternated taking 1 one day and 2 the next and that brought me to about 30. If iron sat is good and epo is given on time, the other numbers will be good.
I have learned that when it comes to meds it is important to get the right dose and the timing matters. Also, some meds should not be taken with other meds. I have had numerous nephs and dietitians and not one of them has ever informed me of the correct time of day to take a med. They often don’t watch the dose I take carefully and don’t advise me to adjust when necessary. So, when I take a new med I always try to find literature on it, go to the website or call the co to see if they will provide info, and bring the info to my neph.
Sorry you weren’t able to get the info this co sent me. Maybe they have a new policy now of not sending out info. But I spoke to a person up there on a number of occasions who sent me the package of info and helped me to figure out how to get the dosing correct. Maybe you got the office person who sends out the orders. Try asking to speak to the scientific ppl there who do the educating. Whether you get anyone or not, you could try the product for a couple of months and if it works for you as it did for me, I think you will be very pleased. I recall their articles stated that when tested on dialysis patients it worked well with most patients and I was glad to see it worked with me.[/QUOTE]
I still don’t understand why your saturation has to be low. Doesn’t high saturation mean you are absorbing the iron well? Thanks Jane.
[QUOTE=mirabelly;15999]I still don’t understand why your saturation has to be low. Doesn’t high saturation mean you are absorbing the iron well? Thanks Jane.[/QUOTE
Iron sat should not be low. It is the available iron and should be at least 25% according to DOQI guidelines.
[QUOTE=Jane;16000][QUOTE=mirabelly;15999]I still don’t understand why your saturation has to be low. Doesn’t high saturation mean you are absorbing the iron well? Thanks Jane.[/QUOTE
Iron sat should not be low. It is the available iron and should be at least 25% according to DOQI guidelines.[/QUOTE]
Can it be too high as well? I am just wondering why you lowered your dose of Proferrin from 3 to 2 after you found a sat of 60. I thought the higher the better - sorry so confused.
[QUOTE=mirabelly;16001][QUOTE=Jane;16000]
Can it be too high as well? I am just wondering why you lowered your dose of Proferrin from 3 to 2 after you found a sat of 60. I thought the higher the better - sorry so confused.[/QUOTE]
Good question. I had not heard the higher the better. Who told you this? What rate does your neph like to see you at for iron sat? At an iron sat of 25%, I have needed a very low dose of epo to keep my hgb where it should be. Don’t know when I’ll get the opportunity, but I’d like to put this question to a professional who can answer what the ideal iron sat is in order for iron and epo to best work together.
I don’t know what my levels need to be - I will have to ask too. Now I see what you mean about the epo. Well, I am going cold turkey and am going to try the Proferrin for a while - I just hope it makes my ferritin levels go up quick. It is no fun losing your hair.
Kidney School has a module on lab tests that gives recommended levels. It’s Module 7. You can work through the module interactively or you can download a PDF of the contents.
http://www.kidneyschool.org