I was successful in obtaining iron infusions with Medicare approval. My iron panels had worsened with my iron % sat decreasing from 28% in April to 15% in July, my TIBC from 333 to 320, iron from 94ug/uL to 48 and my ferritin not improving. (It had originally been 15 in January and increased to 28 in April after following up with Sue's advice and taking 100mg of iron bigycinate every other night, but remained 28 in July.) I had 2 iron infusions of Feraheme or ferumoxytol 1 week apart, on August 13 and 20th. I will not be repeating my labs until November. Should I be taking oral iron? The tablets of iron with vitamin C caused a lot of GERD and I switched to liquid iron , which is probably why my ferritin did not increase. I forgot to ask my doc if I should continue with the oral iron. I really did not like taking them, but I have no idea how much these infusions raise your iron and ferritin. Still cannot find the reason for my low ferritin and other values of the iron panel. My RLS has continued to be controlled with pregablin 100mg.
Continue with oral iron after infusion? - Restless Legs Syn...
Continue with oral iron after infusion?
nth.nhs.uk/resources/intrav...
Here in the UK, the general advice is that you can continue oral iron a week after an iron infusion.
However, you should ask your doctor about this and also ask if they can find any reason why your levels keep dropping. A stomach ulcer perhaps?
If you experience GERD, the standard treatment of PPI meds can stop iron absorption. I presume you don't take these?
I just had a endoscopy and colonoscopy to make sure I did not have a GI bleed and it was normal with some mild irritation noted on my esophagus but no erosion. I had one polyps removed and another small one cauterized. My doctor did not think this was the cause of bleeding, although, she (my hematologist) told me she thought there was some source of bleeding since my ferritin had been so low. I HAVE been taking pantoprazole for probably 10 years due to severe GERD. When I questioned my gastroenterologist re this and asked if this could cause that much of a drop in my ferritin, he said he had never heard of PPI's causing that. I did not understand his reasoning as I knew that they could interfere with iron absorption. Do you know if this could actually cause this much of a drop? I am going to find a different gastroenterologist. I have tried getting off the PPI and will try again, but it is difficult and I am afraid of esophageal erosion. I have found that the Gaviscon Advanced do really help, but they are very expensive. Anyway, I will go back to taking iron supplements with vitamin C.
I am not sure. A new gastro enterologist may have more answers.Also consider a high quality Probiotic, like Symprove or VSL as they can help to heal a leaky gut and help acid reflux symptoms.
Thanks so much. I will try this.
I take generic Gaviscon when I have GERD symptoms and it's not expensive. See if you can get that.
I have that but I found I was taking so much (when I tried to get of Protonix) and it has a lot of calcium in it. I don't like anything with calcium in it if I can help it as it can go to your arteries and cause calcification or cause kidney stones. (I already have some mild calcification.) Sue Johnson mentioned Gaviscon Advanced which is an alginate and it seems to work well. However, have to get it on Amazon from UK as they don't make it here and it is expensive.
Which liquid iron did you take and how many mg? Was it OK or did it cause problems too?
The liquid iron I took at first was Natures Way Liquid Iron which had 18mg of ferric glycinate per 15ml as well as 2Gm of carbohydrates. Taking 100 mg was way too much carbohydrates for me plus it was expensive. I tried Hematex, which had stated it had 100 mg elemental iron per 5ml. I also took vitamin C with this. My hematologist said liquid iron was crap. I found trying to take the pills was effective in raising my ferritin but caused so much GERD especially since I was taking vitamin C with it on an empty stomach. My hematologist suggested I try Vitron C which is iron carbonyl and has 65mg of elemental iron per tab. I will try to take 1-2 of these every other day.
There's nothing wrong with liquid iron. If it didn't bother you I would go back on it. If it did you could try the Vitron-C. If they both bother you I would stop and just wait to see how the iron infusions work. The problem with Vitron-C is it is a slow release form. This reduces its side effects but it bypasses the area where it is best absorbed so less is absorbed.
In either case take Lactobacillus plantarum 299v as it also helps its absorption.
Thanks, Sue. I did like the liquid iron. I didn't know about vitron C being slow acting. I will look into taking the probiotic.
I see Dr. Christopher Earley, expert in RLS at Johns Hopkins. He said to stop the oral iron when I had the infusion,
Thanks. I was going to try to make an appt with him. Did you have a hard time getting in to see him? I have heard mixed things about the RLS clinic there as far as getting through to people to set up appts. What has your experience been there, if you don't mind my asking? My family and I go to Johns Hopkins for every other type of practitioner.
I have been seeing him for years. I don't recall having any problems getting in to see him (although it's been years). I know you can go on the web site & make an appointment on there but I assume you can call there too. He is amazing - takes all the time in the world to talk with you and when you send a message through My Chart to him he answers within a day. Also, when you do have an appointment, he takes you immediately. No waiting. While you are there you also make an appointment for the next time.
Wow! He sounds like an awesome doc! I will call and see if I can get in. Hopefully, he is still taking new patients. Thanks so much.
I recently had an iron infusion as my ferritin was 35. The hematologist that ordered it, did a huge blood workup (15 tubes drawn!) Some of it was to see if I had a clotting disorder as I had blood clots last January. The rest looking for various deficiencies. Everything was normal. I had just had the iron infusion in early August so this was done being it was so soon after, it will be done in November. But, what I'm getting at is that he was very smart, very through and didn't find the Protonix to be an issue with iron. He knew I had GERD and was unable to tolerate oral iron. The only thing I can do to attempt to keep it up is a diet with foods rich in iron. I can see where you are concerned being you didn't have much response to the infusions. I had an iron infusion in April when my ferritin was 46, a month after the infusion it was over 100. It was 35 after 3 months, so it hasn't dropped quickly. I think you should ask your doctor about other routes of blood loss. Do you have any kidney problems? Best wishes to you. I just started the pregabalin recently, I'm happy it's working for you.
Hi..thanks for your input. I just had the iron infusion s 2 weeks ago and have not had blood work f/u and won't until November. I did not have much of a response to the oral iron, so that is why I was able to get the infusions. I had a lot of blood work before all this also to try to rule out causes. My kidneys are fine. Wow..it makes me think as though I had better start the oral iron up again (if I can tolererate some other form) as hearing you had such a drop 3 months later is somewhat concerning. Good to hear your docs feeling about the Protonix. I hope the pregablin works well for you. It has been a life safer for me and I have been able to stay on 100mg every night without needing to go up. Once every few weeks I do get RLS at night and then I take another pregablin, but that has only happened about once a month.
I had major surgery and all of my red blood counts dropped severely so Dr. Earley put me on Ferrous Sulfate and Vitamin C until I could get an infusion. Fortunately that did not bother my stomach and I was able to get the infusion less than a month later. I have to have my blood work rechecked in October.
You said your ferritin was 46 and a month later over 100 but dropped to 35 in 3 months. I believe that is a huge drop. When I have my infusions mine goes up to about 650 and only drops to the 400's and then 200's and then lower. Never that small increase and what I think is a big drop.
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