Iron Infusions/Anemia

[JJOM]

Hello,

I have a few questions that relate to Iron Infusions, and those of us with crohn's related anemia. After some looking around there are sprinkles of information 'here and there'. I figure these questions may be pretty standard, and helpful to others too.

Info: I have been getting B12 injections and taking Iron Pills for months now. My B12 has improved, but my Ferritin Levels seem to be stuck in the 7-8's, and my Hemoglobin won't break above 10.1 (hovers in the 9's).

Questions:

If you took Iron Infusions, how long until your levels rose?

Do you feel that this improved your quality of life (energy/endurance/healing etc.)?

What was the frequency of your infusions to get your levels up?

Were you on immune-suppressants/Are you still on them (like 6mp etc.)?

What was the protocol to maintain your levels once they improved?

Trying to understand what my Hematologist is looking to do. I will update with how it goes for me. Thank You

J

 

[Jennifer]

I never had Iron infusions but did have to take iron pills as a child because I was borderline anemic. Generally you feel tired and unwell when your iron is low so the infusions will help if the pills are not working. We tend to have a hard time absorbing anything really. I've been really tired myself and may have my doc check my levels to see if I need infusions for that too (I recently started getting the B12 injections). I imagine that it would take a little time for you to notice the effects (I hardly notice the effects of the B12) but you should start to feel better when your numbers get back up into the normal range (my guess is it would take a couple months to get into the normal range but your numbers should go up per infusion).

Edit: And welcome to the forum!

 

[Manimation]

I was on iron as a kid.

I probably should be on it now.

It's just another chemical your body needs to function at peak efficiency. That's about all I have to say. Welcome to the forum!

 

[Lulu]

I am having my first iron infusion tomorrow. I also take iron tablets and have been having B12 injections for about 6 months.
My GI didnt say anything about whether I will need infusions on an ongoing basis like the B12 or whether it will only be until the levels are back up to normal.
I dont feel any different after having the B12 injections so will be interesting to see if I do after the infusion.
Will let you know what I find out

 

[Nytefyre]

I had my second infusion of 2011 yesterday. I use Venofer because I went into anaphylactic shock with the Dexferrum (iron dextran). If you use dexferrum, they will give you a small amount as a test. If you will have a reaction, it will be in the first minute or so (for me it was 30 seconds, then I thought I was going to explode! An epi pen saved my life).

The infusion process is pretty easy and takes about 2.5 hours for me, including check in and phlebotomy. I get my numbers at each treatment so I have my own record.

If you took Iron Infusions, how long until your levels rose?
I started iron infusions in 2010. I had one a week for 5 weeks, then on to montly maintenance doses. I stopped going and had to start again. I will have one infusion a week for the next two months, then maintenance dosing again. I am feeling better already(had my second infusion yesterday)! I am not as dizzy, blah, blah. My levels haven't really risen all that much yet, so it may be a trick of my mind, but with another infusion around the corner, it's only a matter of time!

Do you feel that this improved your quality of life (energy/endurance/healing etc.)?
YES!!!!! Give it time. You will feel loads better! At least I did!

What was the frequency of your infusions to get your levels up?
Once a week for two months, then check with my hematologist. If everything is looking good(levels, etc) then its on to maintenance doses, which I am actually going to maintain this time!

Were you on immune-suppressants/Are you still on them (like 6mp etc.)?
I have taken 6mp in the past. Not on it or any other immunosuppressants currently.

What was the protocol to maintain your levels once they improved?
Maintenance dosing once a month, although I didn't maintain! Now, I have to start all over with the once a week thing.

Trying to understand what my Hematologist is looking to do. I will update with how it goes for me. Thank You

Good luck! Other than the issue I had with dexferrum(very, very scary!), iv iron has helped sooo much! I go in and all the nurses know me. I feel comfortable there. They have extremely comfortable chairs and big tvs and candy and juice boxes. They have warm blankets (the infusions might make you cold. also, a lot of cancer patients) and comfy pillows. The phlebotomy techs are wonderful and patient and funny and kind! I've had a great experience all around! I hope your experience is just as good or better!

 

[Naddie4589]

Hey!
I have been taking iron infusions for awhile now, they are great because my doctor told me i could no longer take the pills to get my levels up. They worked almost instantly i felt the difference. The kind i used were called venofer, which they mixed with the solution and had it run over 3 hours or so. Let me know if you have anymore questons

 

[littlemissh]

I am having my second course of venofer at the moment. Mine take 1-2 hours to run and I have 3 infusions over a 3-5 day period. On both occasions I have also had a blood transfusion just before as my hb dropped very quickly.

It takes about 1-2 weeks to increase hb by 10 (uk units) so fro 90 to 100 for example.
Thats if you have no ongoing bleeding. The first course didn't raise my hb at all because I had active bleeding still (and my husband punched me accidentally in the nose causing BIG nose bleed which didn't help!)
It does not make your hb rise any faster than oral iron...if you are absorbing the oral iron which I don't seem to. Once the small bowel is less inflamed oral iron may be effective again.

Cosmofer is given as a longer single infusion at my local hospital. Takes all day.
They like to keep you on what you have had before if no reaction ie they don't swap and change between cosmofer and venofer due to the allergy risks.
I have had no ill effects from the 4 infusions I have had so far. 2 more to go this week and hopefully won't need any more if new drugs get working.

 

[spingirl]

I had venofer for a period of...hmmm...over a year's time maybe a year and a half...but it started out monthly and then less frequently. I wasn't too crazy about going but once I got there I was ok. I just timed it so they served me lunch and a snack!!! That broke it up. The needle wasn't so bad...I had a great nurse and you get to be friendly with them. I just felt a little bad for myself since I was in where they did the chemo too...and it was depressing...but then I was also thinking...thank GOD I"m not getting chemo. There wasn't usually anyone to talk to there. They spaced us apart and it wasn't crowded at lunch time. Sometimes I would bring my son or my father for company but I was fine alone too. It took a few treatments before I noticed a change but I did, finally. I would walk up a flight of stairs and have to stop in the middle while old ladies would sprint past me! I was only in my late 30's at the time. Now when I am tired I think of anemia right away but they alwasy say no...but my B12 and D are very low. I think the anemia was heavy periods. I was peri-menopausal every early and because of my age and my UC - they just blamed it all on the UC. Otherwise, now that i have a flare...and blood in my stool...but no periods...I am not anemic? Oh well...I guess I needed it one way or another and its not important but...I recall my hematologist teaching me how to look at my hands to see the red...the palms and the lines have to have color in them. He also said it took a while because the tissues in my organs were deprived of oxygen and it takes time to get everything back and healthy again...its not like its just going into your blood and that's it. You can only absorb so much at a time too. That is why he spaced me out. I know one time they dripped it too fast and I had a bit of a reaction. I got all itchy. They gave me something after that with it. Not sure if I helped at all but I can say it didn't hurt and I would not bat an eye at going again (except that I would be bummed I needed it in the first place). You will feel better after a few treatments. For that matter...the doctor said I had a better blood count than he did when I finished up!!! Good luck!!!

 

[ameslouise]

I just started on Venofer 3 weeks ago - I get a five minute push into an IV! It's great and supposedly a lot less change of side effects/reaction than the drip.

Too early to tell yet if it's helping, though I got a b12 shot along with it last week and this week is the best I have felt in a couple months.

-Amy

 

[Pirate]

I have had a lot of infusions of Venofer over the years. This is the only way I can take iron. I get so cramped up any other way. Also, it helped when my hemoglobin count wasn't come back up to normal. I really do notice the differance right away. My energy level seems to sky rocket. I have learned to tell when my iron level is down so I call my GI and we get things rolling again. Piece of cake.

 

[Lulu]

Had my iron infusion last Thursday. Took 5 hours but the staff at the hospital were great. They didnt have touble putting the needle in and provided dvd's, books and plenty of yummy food.
I dont feel any different but felt ok before also. It was only before I was diagnosed that I felt awful, tired all the time & lacked energy.
Not sure how often I will need infusions, specialist just said he will keep an eye on my levels and will take it from there.

 

[GothamGirl]

I have been receiving Iron IV treatment since I was diagnosed with Crohns almost 13 years ago. The most recent is Venofer. I go weekly for about 15-20 min and it has helped tremendously. However my hemoglobin has never been above 10 (lowest was below 5) since I was diagnosed. Have had several blood tranfusions in the past. When I started iron tranfusions I was using Infed (sp?) and it would be every 6 months at 4-5 hour sessions.
Glad to hear your drs office has great staff, it helps the long boring process.

 

[Nethan86]

I have hand venifer infusions in the past. It took 3-4 infusions before my levels started rising

I do feel like they improved my quality of life greatly! I can walk up a flight of stairs with out needing a breather halfway up. I dont nap 24-7 and im not freezing all of the time

My doc gave me an option i needed 6 infusions i could do them weekly or every other week. then i would have about 4 weeks off and i would start the cycle agai

I wasnt on any immune suppressants at the time of treatment

The protocol to maintain my levels once they improved was routine blood work to monitor my levels

I was mildly allergic to the venifer(sp) so they would give me iv benadryl beforehand

 

[Mitzi]

Venefer did the trick for me two years ago. Think it may need another sometime.

 

[JJOM]

Thank you all for adding your story/info.; very helpful to myself, and hopefully others.


I finally got my first Venefer infusion today.

The infusion went well, and I was done in about an hour and half from when they called me in.

I am scheduled to get treatment weekly (for about a month) and then I guess the hematologist will then devise a plan to maintain.

I am hopeful this will bring me energy (and maybe even some healing).

 

[Mitzi]

It really helped me and I was in my 70's! You will feel much brighter and have more energy. I have had blood tests to make sure all is well every three months from my hospital ever since and so far so good. All the very best.

 

[rygon]

I nearly had an iron infusion today, but after3-5mins of it going in I had a really hot flush, felt dizzy and sick. They thought i might be allergic to it so stopped and ive got some liquid solution to take now

 

[Mitzi]

I did land up with a bit of phlebitis in that arm but it soon went.
Hope the liquid is okay for you and it sounds more pleasant then having a needle in your arm and having to sit around.

 

[fromthegut]

I had infusions about 5 years ago. They helped tremendously. I know they ahve been going down but my GP would not send me back. I needed a referal. Becaue of thsi I am switching to a new clinic. I hope they will lsiten to me. My old Gp also kept telling em to up my anti depressants. I really think it has been my iron slowly getting worse. He did tell me about 1 1/2 years ago to take a mutli vitamin. I totally rolled my eyes. I am tired of dealing wtih Dr's who think they know it all. it has cost me way to many years of bad health. He is far too worried about illergic reactions as I get sicker.

 

[Mitzi]

Surely they will let you have another blood test as this would definitely tell you the answer. Mine are down marginally after about three years but they keep an eye on them and say they are not worried. I trust my doctors because they are so very good, listen to you and presume you know your body probably better than they do. Hope you feel better soon. Keep on pluggin' away as you know your own body. All the best.

 

[Texas]

I've been anemic (iron and b12 deficient) for as long as I can remember. My doctor has never suggested an infusion. Once while hospitalized during a flare they recommended a blood transfusion (which I declined) but no comments since then. Is this something that I should be asking about or were ya'll told to do this by your dr?

 

[Mitzi]

Well the specialist I see every year at the moment (I'm in remission) told me to have it so I did. He now regularly sends a form for me to take to my doctors every three months just to check that everything in the blood department is still okay. All the best

 

[littlemissh]

Texas-Oral iron is as effective as iv IF you absorb it. You only need iv iron if your iron stores are very low and not picking up with oral iron. So if you are anaemic the next step would be to have your iron levels(ferritin levels) checked as there are several different causes of anaemia and it's not always iron deficiency. Then a trial of oral iron to see if you tolerate it and you absorb it.
Most people absorb it well, less likely if your Crohn's is in the small bowel.

 

[Mitzi]

Sorry about the number of meds. you have to take. I too am a senior member but I found I couldn't tolerate any drugs so came off them all about 10 years ago. I do have asthma too and can tolerate the inhalers which is lucky as I find breathing absolutely essential! At least I don't have the side effects from the Crohn's medication but I am in remission at the moment which does help!

 

[JJOM]

Had my second infusion this week. Still no miraculous feelings, but my general Crohn's health has slightly improved.

Hoping that after my third I start feeling better (better as in using my muscles without getting exhausted).

I do notice that I am pretty tired for about a day after the infusion. Doing some internet searching has lead me to believe that this may be common; any suggestions?



Texas: I too have been anemic (and vitamin) deficient for years and just now 'they' are doing something about it. I am confused as to why my GI doc would wait for years to get me to a hematologist.

I had to tell/ask the Hematologist to do my Vitamin levels... Well wouldn't you know, this Irishman ale: had/has very low Vit. D.

Now that I have decided to learn more about my problem and treatments, I am upset that it has taken so long to do this. I'm no doctor, but if your anemic, ask to do something about it. "littlemissh's" treatment plan is the usual protocol. You will only do the IV iron if you can't absorb/handle the pill.

Good Luck (Glad you found this thread, you are its' intended target) :thumleft:

 

[littlemissh]

In the UK you don't need to see a haematologist, my gastro consultant arranges it all which is very convenient.

 

[Mitzi]

Well you mustn't expect miracles as they take a little longer but I did find that after I had had them all I did feel much better in myself! Not 21 again but better than before I started them!

 

[trebor-HI]

I can see this is an old thread but wanted to chime in. I'm 61 years old and a lifelong runner. My running pace improved dramatically after an iron infusion. I've had two sets of iron infusions. One set in 2015 another set in 2017.
The 2015 set consisted of three infusions of Venofer. The insurance contract charge was $2,245 total for the three infusions.
The 2017 set consisted of two infusions of Injectafer. The insurance contract charge was $3,760
I end up owing 20% of the contract charge. So, expensive for both me and the insurance company.
Blood-work improves considerably but then eventually decays. The root cause is the crohn's so until the crohn's goes in remission one can expect the decay.
Would like to take regularly, like maybe 3 times a year, but the cost...
Until I had the iron infusions, I had no idea how much impact the anemia was having on my running. I just assumed it was age and shift work.