So my HGB was 13 before i started taking Venofer because my iron was 15 and ferritin 7. Now after 7 infusions my HGB is 11.7 and iron 23. I dont think they are doing anything! The hematologist's office wanted me to do Injectafer but I declined bc i didnt want any IM iron....come to find out it can be given IV as well and they didnt tell me. Anyway, now back on oral ferrous gluconate and it's hurting my stomach. We are doing the Anser ADA test next week to check my Humira levels...I may go to once a week. Blah!!
7 Venofers and declining HGB
- Thread starter aypues
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I did IV iron: iron sucrose. It was effective but honestly it sucked. It was a 5 hour infusion plus an hour wait post infusion to watch for reactions. This is all in addition to the time it took to get me signed in, IV started, initial vitals etc. I really I was at the hospital for just over 6 hours. I then did that twice more to get to my needed dosage. (So 6 hours once a week for 3 weeks). I also got leg swelling and greatly increased diarhhea after my first one. The diarhhea lessen after the first dose luckily but I still got leg swelling.
That said it worked. It's been a year since those 3 infusions and despite continual bleeding I am just now starting to drop to the almost low range.
Oral iron wise have you tried other types: I used feramax which is a polysaccharide iron complex. I switched from ferous fumerate I believe it was and had almost no nausea and stomach upset. The downside is it is substantially more expensive vs plain iron (6$ vs 60$). That might be a good oral option for you.
That said it worked. It's been a year since those 3 infusions and despite continual bleeding I am just now starting to drop to the almost low range.
Oral iron wise have you tried other types: I used feramax which is a polysaccharide iron complex. I switched from ferous fumerate I believe it was and had almost no nausea and stomach upset. The downside is it is substantially more expensive vs plain iron (6$ vs 60$). That might be a good oral option for you.
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Are you being checked for bleeding anywhere? I had this issue for a three year period. I was over 60 units of blood and probably 30 units of iron in that time. A pill cam showed I had lots of lesions in my bowels that apparently went on to spontaneously heal.
For me, I think it healed due to a combination of 3 issues: better sleeping, loss of a chronic allergen (the family cat passed away) and a change to a slightly more acidic drink as my regular fluid. There were no changes in medication that were apparently responsible for this.
Good luck with yours, I know from experience chronic anemia is really not fun.
For me, I think it healed due to a combination of 3 issues: better sleeping, loss of a chronic allergen (the family cat passed away) and a change to a slightly more acidic drink as my regular fluid. There were no changes in medication that were apparently responsible for this.
Good luck with yours, I know from experience chronic anemia is really not fun.
So due to the suggestion of FrozenGirl I got on iron polysaccharide and it's been great so far! Found it on Amazon for pretty cheap...$18 for 100 in a non blister pack normal bottle (Ferrex). It's a crazy amount of iron too! 150mgs elemental. Curious to see my iron and ferritin studies in a month or two. I don't have any abdominal pain or upset that I was getting from my twice a day Ferrous Gluconate 27mgs.
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Ask your doctor about increasing your Humira. Best to you.
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Yay! I'm glad it worked for you. I think it took about 2 months for me to see full effectiveness.
