How long between your Infed infusions? (if you get them) Plus reactions

I just had my 3rd iron infusion yesterday since last summer. The last 2 were long, slow Infed.  I was there for 7 hours yesterday.  Even after Benadryl and Pepcid I had an allergic reaction and then had to have a cortisteroid so it took extra long. Last time the roof of my mouth and throat felt itchy this time the same thing happened but I also got instantly congested and my hearing was getting muffled. Scared me for a little bit but it went away after the steroid. Then I just had to deal with being flushed and feeling hot! Couldn't have asked for a better nurse though, I'm a hard stick and she got the IV in so easily with no pain...loved that!
Anyone else have a reaction like this?
I'm also wondering how long you typically can go between infusions. My last one was in late November so I didn't even make it 6 months. I've been so tired lately, no energy and needing to take lots of naps.  I'm so glad I've found a hematologist that understands...if I could only find a good PCP now.
I'm concerned about the short intervals. Our insurance leaves a big chunk for us to pay each time and I also get anxious about going so wish I could at least make it a year inbetween.

No nap so far today and I got some cleaning done so I think it is already kicking in. Can't wait for the full effect!   :-)

Not sure how old you are and if you still have periods. If you do - that will contribute to more rapid blood loss and you may need the infusions more often.
I had RNY but after 3 years I needed infusion.  My ferritin increased from 9 to 93 after 3 sessions.   Since I most likely do not absorb any iron from food or supplements, and they cause me a great deal of pain and discomfort - my hematologist and I decided that we need to watch and see how my body maintains the iron storage.  In 5 months my ferritin dropped only 4 points (to 89).  But that is how much iron the body is using.  I do not have periods - I had endomertial ablation done, and last  couple of year - menopause too care of the rest.
If you still have periods - but do not plan to get prego - you may consider getting the ablation. If the periods wont stop completely - at least they will get very light - so you will not be losing a lot of blood every month and you can go longer time between infusions.

BTW: my feritin dropped from 100 before RNY to 10 in 2 years due to multiple surgeries I had.  Even with heavy supplementations of iron for over 2 years - I was not able to get my iron up.  

Sorry I'm late in thanking you for your reply.
I am still menstruating but always light.
Wow, your infusion sure made a difference in your numbers!  I am just disappointed that I can't go longer inbetween infusions but I'm glad there is an alternative to taking supplements because they just don't do anything for me. My infusion kicked in an I feel so much better this week!
Thanks again

I've had an infusion once every 11-13 months, on average, since my surgery in 2006.  However, I've had life-long issues with iron deficiency.  I was told it was due to a double whammy . . . it's a common side effect of premature birth, plus can be inherited and my mom had lifelong issues as well.  The severity of it was discovered during my pre-op bloodwork and after several months on high oral doses of iron with absolutely no improvement, I had to have two infusions within a month's time to get me up to the normal range.

My hematologist has worked with me and we've tried several different iron's out there (standard, the Proferrin, Integra, etc.) and I still end up having to have an infusion about once per year.  It appears my body just does not absorb it from food/supplements now.  The exception to that is I had my regular infusion last August and had to have another one in November.  They attributed it to how much my body had been through during that time (potassium depletion due to water pill my doc put me on, the dreaded anal fissure and the DVT/Pulmonary Embolus episode I had at the end of July.  My last quarterly check was fine and I'm doing much better and have my next quarterly check on next Monday.  We'll see what the numbers say.

In regards to reaction, I only had one my first time because the vein blew during the benedryl drip and it didn't get into my system.  I experienced some frightening tightness and congestion (like a severe, severe asthma attack) for over an hour until about 20 minutes before the infusion finished.  Haven't experienced that since.  Now that I'm on coumadin due to the blood clots, I do have extended bruising from the infusion, even when the stick is good.  But if a vein blows, for months it looks like I beat the crap out of somebody . . . at least, that's what I tell people.

Hope this information helps.

Thanks Jojo. Sounds like you've have a rough time with it.
My hematologist has sent me for some tests and had to do an icky stool sample thing to rule out other reasons I could be needing it so often.
That reaction feeling isn't fun, is it?  Sounds like mine wasn't as bad but it was bad enough that I was getting nervous.
Thanks for your reply!