Sorry to hear you are going thru this again.  I've been able to take pills vs infusions. I have chronic problems with my underactive thyroid. Ever since my j-pouch surgeries it has been difficult to manage. My hair falls out and I am fatigued all the time to name a few side effects. I imagine you are very fatigued.

They say depression is normal for the chronically ill.  It doesn't help much knowing this when you are faced with non-ending health and financial problems.  

I hope you are able to have fewer infusions this time.

I honestly don't feel any more fatigued. When I had 10 infusions the end of last year, I didn't feel any differently after I got the infusions even though my levels were all in range. I need to get this first round of infusions and try and find a supplement that I can take that wont give me side effects.. I called my insurance company and since I am at the 80/20% of my deductible now, each infusion will cost me $55.00 out of pocket, hopefully I only need the 5.  if I didn't meet my deductible each infusion would cost me $250 out of pocket!! I cant afford that.. so I need to figure something out.. what do you take??

HI, Poucho.  I am wondering if blackstrap molasses would work for you?  

I took Vitron which is an iron and vit C combination. The C helps absorption. Fortunately I didn't have any side effects. My Dr prescribed it but it is available otc. I don't think my ins paid for it thru the pharmacy. I hadn't met my deductible yet at that time but knowing them they wouldn't have covered anyway. 

I voiced my concerns to my hematologist about the costs of the infusions and asked if after my 5 infusions if there is an iron product I could take with least amount of side effects to try and maintain my levels. I asked him about ferrous sulfate and ferrous gluconate, and his response was that the sulfate would cause the most stomach issues. Then I get a call from pharmacy saying prescription is ready. I ask what it was and they say ferrous sulfate 3 times a day with vitamin C for absorbtion help. He just said sulfate would cause issues and then calls it in and wants me to take it 3 times a day!!??? I put a call into the nurse this morning so waiting to hear back. 3 times a day though? does that seem high? I am thinking he prescribed that thinking I wanted to try that instead of the infusions? but my question was after the first 5 infusions to take something to maintain my levels...

aka KNKLHEAD posted:

HI, Poucho.  I am wondering if blackstrap molasses would work for you?  

is it safe to take? No doctors at the Cleveland Clinic with say its ok to take any herbs or supplements. Even Dr Shen the great jpouch doc I have says he doesn't recommend any herbs in relation to the jpouch.

POUCHO,

Wow, my doctors at Mayo's never discouraged me from taking vitamins or supplements. In fact they gave me a multiple vitamin thru the pharmacy plus gave me my own magnesium while in the hospital.

I agree 3 times a day sounds like a lot but maybe he feels you need it. I'll be interested in his response about that and what kind to take so pkease ket us know.

I took blackstrap molasses for a while and it didn't pose a problem that I'm aware of?     I do know that sometimes the iron pills can cause irritation.  I think you'd know pretty quickly. I'd opt for giving it a shot?

VITAMINS ARE OK, SAID NO HERBS

Molasses is fine, but not enough bioavailable iron to bring up very low levels. Plus, it can cause diarrhea, and you really don’t know how much iron you are taking in. Another consideration is palatability. I am not sure I could force myself to take it reliably. Standard supplements are more reliable. 

3 times a day is pretty much the Rx amount of FeSO4 (ferrous sulfate) to treat significant anemia. Spreading the dose throughout the day allows for a lower dose and less risk of GI upset. You need much higher amounts of non-heme iron than heme, because it is less well absorbed, even with ascorbic acid. Heme iron is the iron you get from meat. 

https://my.clevelandclinic.org...iron-supplementation

Even after transfusions of packed RBCs, I was taking ferrous sulfate 3 times a day. It took several months at this dose to bring my hemoglobin well into normal range. Over the years, it has not been a continuing issue for me though.

Jan

Just out of curiosity, don't you guys have i.m. iron injections as an option in the US?

Does it have to be either oral supplements or i.v infusions? IM injections are pretty common in Turkey.

Yes, you can have an IM iron injection. However, with the newer IV compositions, getting it IV actually has a better profile, in regard to side effects. IM injections can be painful and cause orange discoloration. But, it is cheaper, because it does not involve the trappings of an infusion.

https://www.healthline.com/hea...w-long-does-it-take4

Jan