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
Yeah, they did a biopsy when I had the endoscopy and he said that was normal. I just feel like we are missing some kind of easy thing that would make this go away!
The gastroenterologist who did those tests questioned how many infusions I have had and said there are side effects that are long term like antibodies or something. But when I asked my hematologist, he said I am on the type of iron that is not known for that and that there is no choice but to do it. He said he has given me enough iron to build a skyscraper, lol, and he has tested for everything he can think of so I have to just keep going in order to keep my counts up.
I just read on here that people are talking about infusion side effects. Does anyone have a reference I can look at? I really haven't found anything. I'm on Venifer but I forget how much. Some weeks he has done 2 bags and a lot of times I have a giant bag of multivitamins to try to help with absorption.
I hate complaining, I really do. You know how it is at infusions, mostly everyone else is getting chemo and how can you not feel grateful that you don't have cancer?
I'm just dreading today again because my favorite nurse,(the ONLY one I will let do my IV!), told me we have to look for a new vein because there is too much scar tissue on my favorite good one. So I know it will suck.
Well, I had the infusion and it was not so bad! The nurse ordered the little baby needles, lol and it didn't hurt!
However, the Hgb only went up to 8.8 after the infusion last week.
The other thing is that my hematologist came to talk to me and said he wants to do a bone marrow biopsy next week and another infusion after I told the PA how bad I've been feeling the past couple weeks because it seemed worse than the other times I had Hgb that was in the 8's and they looked at my bloodwork for the past month and found that my white count is too low also and some other values are too low, I don't remember what, and he said that contributes to fatigue. I felt so tired yesterday morning that I couldn't even get a shower or do my hair.
I'm kind of upset because I think they should have noticed it before yesterday but it seems like the PA only looks at the ferritin and Hgb since that's what my usual problems are. Once she told the doc he reviewed the bloodwork and found this.
So, anyone had a bone marrow biopsy? I'm afraid of it because I read that it hurts a lot and he said he only does a local numbing of the area. I'd prefer complete knock out! I think I just have a needle phobia now after so many IV's. It never used to bother me but now I'm a big baby about it.