Iron infusions for 4 years
This is my first time ever posting/reading a forum about anemia, I just found it while googling anemia problems.
If anyone wants to read and perhaps give an opinion, that would be very appreciated!
History... I've had MS for 10 years with some bad relapses and great remissions. I am currently in a remission but it is sometimes hard to differentiate MS symptoms from anemia symptoms.
Anyway, I was referred to a hematologist 4 years ago when my Hgb was 8.0 and no detectable iron stores. I took Rx iron for a couple months and no change so he started iron infusions, once a week for a few months. After my Hgb was up to 10, he said I could go every 2 weeks and then I got it to every 4 weeks while maintaining a 10. Ferritin is generally between 0 and 20.
I get my levels checked every time I go for an infusion.
So here I am, 4 years later, still getting infusions. Last week he added B12 shot. I'm feeling frustrated because I'm so tired and out of breath and my Hgb last week was 8.7 and ferritin was 4.
Whenever I skip iron for more than 2-3 weeks, my counts drop dramatically and I feel incredibly crappy.
The last time I was at a Hgb of 11 it was awesome! That was earlier this year, I think about June.
I am a runner and weight lifter between MS relapses and it gets so hard to exercise when my counts are low because my chest hurts and it is hard to breathe.
I have had so many infusions that I really don't know the total. Just that it is about an average of once every 3 weeks for the past 4 years because I am supposed to go every week and I sometimes skip it and stretch it out.
I'm very sick of IV's and feeling crappy and weight gain for a few days every time. If I go once a week like he wants me to, I only have a few days of the week that I feel good before I go and start it all over again.
So, anyone have this kind of experience?
I don't have very heavy menstrual cycles, have had 2 colonoscopies, one endoscopy and a capsule test. All ok except for a couple tiny things, nothing that indicates a reason for anemia.
I have to go tomorrow morning, ugh.
Thanks for reading