Previous comments from original website copied and pasted below:
Ilana Fiorillo wrote:
Thanks for going thru this effort to help the rest of us. I have word that I'll need to start doing this and it's scary,, thanks
Wed, July 31, 2013 @ 5:25 PM
Thanks for all the info on this website & you tube video. I just finshed 2nd transfusion out of 15. I was very nervous, so the info really helped. I will you updated on progress. Thanks
Thu, October 23, 2014 @ 2:29 PM
Thank you so much! I am about to go to my first iron infusion tomorrow and I am so nervous. I hope all goes smoothly for me as well. Thanks so much
Thu, December 4, 2014 @ 8:49 PM
Your video was SO helpful...thank you. Headed for 1st treatment of 5 tomorrow. I feel more prepared. I haven't been in a hospital setting for about 6 years..since retiring from labor and delivery nursing and then donating a kidney! Thinkin positive.
Sun, October 25, 2015 @ 9:29 PM
Sarah f. wrote:
your guide is so helpful! Just like you, my ferritin level is -1. I'm scared to go in for my first infusion next week, but your guide lets me know what to expect, which is comforting:)
Wed, October 28, 2015 @ 10:32 AM
My ferritin levels were 9 and I had 5 iron infusions. That ended a month ago and I'm supposed to be re-tested on Monday. However, during the past week (three weeks from when my iron infusions ended) I developed horrible fatigue and joint stiffness/pain. Now I'm afraid that I have actually developed iron overload from the infusions(!!). Anyone else have this happen?
Fri, December 18, 2015 @ 11:18 PM
I have beta thalassemia and I get iron infusions on a regular. I have had this since I was a child but only found out 6 years ago.I still see the hemotologist every 3 months..does anyone else have this ???
Wed, June 1, 2016 @ 1:07 PM
Great idea for iron infusion. I have been with problems with anemia since 2000
Periods heavy that in 1 week my CT dropped from 16 to 8. I also became "allergy queen:
Has my daughter called me. 8 food allergies +
Seasonal. Level 9 -10. I had 5 trips to emergency room swollen tongue couldn't breathe
Fever saliva coming up.
The iron pills pain in stomach and unable to poop. Tried liquid iron from store helped but still up and down levels
Since the iron infusion my immune system only
1 food allergy just stomach pain so I avoid.
I was give Tylenol for possible fever,
Blood pressure constantly checked, steroids for allergic reaction. Recliner with blanket
I fell asleep it took 2 hrs
Sun, August 7, 2016 @ 1:33 PM
Hi. This is all foreign to me. Just finding out of low iron/anemia issues. I feel horrible & have slowly gotten worse over past 6 months I was in hospital in Dec. w/kidney stones & sepsis. There became aware iron low. Given iron pills to which I did. In short felt bass went Dr. Blood count 7.8. Go to hematologist. Got first iron infusion last Thursday. & oh boy I feel worse than before treatment. I hurt all over. Just horrible. Like couldn't go to work bad. Was to go today for second treatment. Thinking to myself to myself am I gonna feel worse than I do now. Called Dr yesterday. Telling nurse my concerns. Dr said more than likely have same reaction so will b getting a different kind of iron @ hospital 2 days in a row. Getting to my question to anyone that could/would like to comment. Are these normal symptoms? Is there something I can do or take to help me w/the pain & just horrible sickness I am feeling?
Appreciate any insight. Thank you
Thu, September 29, 2016 @ 3:05 PM
jackie hiaring wrote:
Thu, November 3, 2016 @ 2:45 AM
I am starting a series of weekly infusions for 7 weeks.(my level is 3. I had no idea what to expect, so this information was so helpful. Thanks very much !
Wed, November 30, 2016 @ 3:23 PM
Jeannie. Katt wrote:
9897638379 I ve had low hemoglobin with anemia extreme fatigue for over 3 years. Treating with diet and iron supplements. How do u get a dr. To listen I can't work , my last Dr.just wants to put me on antidepressants . when I stress my fatigue ,heart pounding out of my chest ,pica, waking up all note long, not enough oxygen , loss of appetite , but to tired to even fix something to eat,is there a light at the end of the tunnel. I've done all the right things , the dr I saw 3days ago said we will see what lab work shows ,labs not back yet. Thank u for this site I know I'm not alone, I had no idea how many suffer from this. Bless u for taking the time to do this .J.K
Wed, December 14, 2016 @ 3:06 PM
Debbie Durham wrote:
I have just completed two iron infusions and so far I feel fine. I admit I was scared before because like a lot of people needles make me very nervous. I was impressed with the center's personnel and their ability to make me feel comfortable. No big side effects yet. Thanks for the girlfriend's guide to iron infusions.
Fri, January 13, 2017 @ 12:33 PM
Sabirah Haseenah wrote:
Thank you so much! I have my first treatment tomorrow and I'm so nervous. My children are scared to death so we watched this together and it has helped ease their minds tremendously.
Wed, January 25, 2017 @ 6:58 PM
Christina Tattoed wrote:
Thank you for your video. I have an infusion tomorrow and didn't know what to expect. You have helped tremendously. I will be packing a tote.
Wed, February 1, 2017 @ 4:20 PM
Mary Moren wrote:
Tomorrow is my first infusion.... I am not looking forward to it. Have had Iron Deficient Anemia for three years now - I finally felt so bad I realized I had to have the infusion... Thank you for answering some questions I had and I too like everyone else dislike needles and will try to be calm and positive! Who knew there were so many people with anemia!
Thu, February 16, 2017 @ 8:01 PM
Yesterday was my first infusion. I have 7 more. I was scared but your video helped- Thank you. Don't laugh - but I am looking forward to the next treatment- Its about 2 hours long and I really appreciate the nap.LOL
Today -after the infusion -I do not feel any better- but the kind nurse told me the treatment is slow to build my strength. That is ok- I have been so tired for so long I have forgotten how it feels to have energy anyway.
Your video not only helped me get ready for the infusion it also helped me to really believe finally that all they symptoms are not leading the doctors to find something else worse wrong with me. I am always out of breathe and my heart seems to race and sometimes skip beats- ---Stairs are the killer and I use to have no issue with stairs- now I dread them. Trying to be Thinking Positive!!and praying -not only for myself but all who have IDA find a quick recovery. GOOD LUCK GIRLFRIENDS - hopefully we will be out shopping again very soon.
Fri, February 17, 2017 @ 3:39 PM
Mary Moren wrote:
Three days after my first post and two days after my Iron Infusion I have to say all through my fear of the "unknown" I am relieved that the process was painless and I had no side effects. The center was great! The nurses were awesome! I was told every time what was to happen so I knew what to expect. I was given Tylenol by mouth then Benadryl in an IV. They took vitals then like in the video I was given a "test dose" of iron that took about 15 minutes. After they took vitals every 15 minutes for one hour looking for any side effects/reactions. Once they determined I was good to go.. they ordered the Iron. I had a liter bag of Dextran (big gun as the nurses said). This was a 4 hour IV. Dextran is best received when administered slowly so the body can adapt. After the 4 hours then a 30 minute saline flush was done. After 7 1/2 hours in the chair I was informed I did exceptionally well! I felt no side effects at all! I was able to eat and drink the entire time during the process. You can go to the restroom easily. I just wanted to let you all know yes its scary! Yes the fear is real! Yes you feel like crap! Yes others don't understand what you are going through! Yes you might need more Iron in the future - but after putting my infusion off for a long while... I can kick myself for NOT getting it sooner! I was told it would take about 10 days to "feel better" (I am guessing I might be aware my energy level might have improve?). For those reading this site and wondering what to expect with your first iron infusion - embrace it and just do it!! Good luck! God Bless!
Sun, February 19, 2017 @ 2:08 PM
I'm back last post was 12-14-16 , since then I've seen a cardiologist, hematologist who is a specialist in infectious disease, natural path (PA) works under a M. D. ,integrated practioner who specialize s in hormone replacement therapy this is a MD she was concerned about the fatigue and heart palpatations wanted me to get a cardiac work up,went back to my primary care Dr ordered chest x-ray, c t scan, eco cardiogram,bolted moniter for 48 hr., results came back primary Dr sent me to cardiologist EKG, nuclear treadmill,trans esophagelial ecocardiogram , sleep study orders, while waiting to go back to cardiologist heart rate staying at 130,chest pain ,short of breath lasting all day I was scared of a heart attack or stroke friend came by who is para medic insisted I go to ER so went to ER in another town so not to be embarrassed when Dr would tell there's nothing wrong with u , and that's what happened, he did say maybe I need a bata blocker from from primary Dr, he said I want to run some labs to be sure ,labs came back hemoglobin 8 ferritin 10 , that could be your problem and sent me home , CO pay was $150.00 before they would discharge me. I had copies sent to both my primary and my cardiologist . Cardio Dr mad that primary hadnot done anything for me. Primary called me to have labs repeated to make sure it wasn't a FLUKE I assured them it wasn't asked for iron infusion since I've been dealing with this for almost 4 years, primary wants me to see hematologist I have a lot April 28_,2017, today I got call primary wants colonoscopy and upper GI repeated ,I had these tests in June 2014 and July 2016 they were good my low hemoglobin started way before these tests. No help until I jump the hoops. At this time my fatigue is thru the roof , heart palpatations are all the time even when sitting more severe when I get up ,if I take a shower my heart beats so rapid I hope live thru it. I will not go back to a ER to be embarrassed again. This is long but wanted u to know hang in there no one wants to listen to your symptoms. Also I completely changed my diet no gluten , sugarcaffiene, diary, only organic meat ,organic fruits vegetables, everything I can get my hands on to boost iron ,protein drinks ,green drinks, got rid of all house hold products and replaced with as close to organic. If not organic .wear organic make up when I do wear it ,no nai polish anything I felt was chemically bad for me is gone.Hope this helps u to know keep searching for a Dr to help . I forgot to mention some of the Dr just want to push antidepressants which I refused.Good Luck thx for giving me a place to vent!!!!!
Tue, March 21, 2017 @ 3:38 PM
Lorraine Jones wrote:
Your video was great and well done. I'm struggling with the issue of low iron that was discovered to be the source of Sleep Apnea.
I have been exhausted for what it seems like, "forever" and it was suggested that I have a sleep test done and "sure enough", I had the disorder.
But here what was interesting.
I had "Restless Leg Syndrome" that was causing my sleep to be interrupted quite often. More so than stopping breathing.
And oh by the way, I weigh 138 lbs and I'm not overweight.
The low iron level ( I think I was/is at 4 % on the iron scale), was causing the Restless Leg issues, which could manifest as nothing more than your big toe twitching.
I'm doing supplements these last few months and the last iron test indicated I was up a wee amount....not much.
I am waiting on the latest results from a test last week, but I'm beginning to wonder if I shouldn't simply move ahead and do the iron infusions.
My Pulmonary doctor mentioned to me months ago when I had the results from my sleep test, that they might be an option for me.
I'm still tired and getting too many colds and I want my energy back.
Thank you for sharing your experience. it was great.
Sun, March 26, 2017 @ 1:20 PM
Hello! I hope there's somebody out there. I just had seven hours of infusion yesterday.
Currently experiencing very wild side effects that from what I read or normal and will subside. Headache, muscle/joint aches...occasional rapid heartbeat not unlike my anemia symptoms...but I feel the heart rate is elevated even in a resting state. Before panicking I was just wondering if it is OK to take pain meds and maybe a light sleep aid like aleeve pm or 800mg of ibuprofen. How long should I wait to seek medical attention? Thanks in advance for anyone who can give a reply
Thu, April 6, 2017 @ 8:39 PM
I have suffered hair loss and discovered that my ferritin was very low. We tried iron supplements and they didn't work very effectively. Got two IV iron treatments and my ferritin is now 600+. Have just seen on the Internet that some people have experienced hair loss BECAUSE of the IV iron treatments (at least they think it's because). I'm very worried. Anyone have any thoughts on this? The doctors don't seem to think it's a problem, but the internet stories are telling me otherwise. Thought it was supposed to help.
Fri, April 21, 2017 @ 11:57 AM
This video was so helpful. Thank you!
Thu, April 27, 2017 @ 1:03 AM
Thank you so much for the video. I passed on the infusions because I just didn't know enough about them, so even though my iron was very low I opted for the liquid every day. It's been a few weeks, and now I think I may need the infusions, but I'll wait for my 6 week follow-up. This was very helpful in letting me know how the experience will be.
Mon, May 1, 2017 @ 8:17 PM
Karen Bate wrote:
The video helped! Still a bit worried about the infusion. My Doc ordered it for relief of restless leg because my ferritin level is 32 which sounds high compared to others. Ordered plant based liquid iron today. Was hoping that would help however sounds like that should be something I should take after the infusions!
I also have Parkinson's commonly associated with Restless Legs Syndrome.
Hey do many of you have a sore tongue? I now know it is related to IDA. I asked 3 drs. of they had any ideas as far as cause for this. All were clueless. Another thank you for the video!
Mon, May 1, 2017 @ 11:06 PM
Thank you SOO much for this video. I know this was a while ago, I hope you are feeling much better now. I am going for my first treatment today. I need 4 to start 2 weeks apart.
Tue, May 2, 2017 @ 9:11 AM
My mother-in-law had her first infusion today and she lost consciousness and had a seizure just a few moments into the procedure.
Is this normal? She also has MS and we are unsure if this could be why.
The doctor did not send her home with any special instructions or request any further tests or monitoring information.
Are seizures normal during infusions? Is there more we should know?
Tue, May 2, 2017 @ 9:29 PM
Ronnetta Griffin wrote:
Elissa, I've never heard of anyone having a seizure, but I know that reactions during iron infusions are possible. I do not hear of them often though. Prayers for your mother-in-law!
Wed, May 3, 2017 @ 12:07 AM
Jennifer Lynn Janssen wrote:
You said ferritin should be between 11 and 18 in your video. Was that a mistake? I thought ferritin should be much higher?
I'm hoping my doctor will prescribe infusions. I can not handle pills and do not want to wait 6 months for my numbers to rise. I missing out on time with my 3 young boys because all I look forward to is bedtime. I go at the end of the month. Praying she approves because I just can't go on like this anymore. I just discovered it a month ago but believe it has been years.
Thank you for this video!
Sat, May 13, 2017 @ 7:45 AM
I have been going through iron infusions since my late 20's, I'm now 41..and I see an oncologist/hematologist and I have to go once a week for 4 weeks then they recheck and see if I need more , if not they see me in 3 months on a regular basis to test me and definitely after 3 months my iron always goes down to a 1 or 2...and it's not bad at all, but I'm also not scared of needles because I have other problems so I'm always getting blood work and other stuff consistently and sometimes they can not find a vein so I have been stuck more than 5 times in one app...in my dr's office they have the lab for iron treatments and chemo and it is kinda great because the nurses are so nice..and where I go they have all recliners, they give you pillows and blankets....each person in there has their own tv...and they give you whatever you want to drink like coffee, tea, apple juice, water or ginger ale...and they even provide snacks like crackers and cookies and things like that...of course the first time I was scared..but there was really nothing to be scared about...and a lot of times now they give you benadryl just in case you would have an allergic reaction...I never take it because I have done it so many times so I know I'm not allergic to it..but each time I get it done it takes an hour to an hour in a half total...but for me I still feel weak and tired even after getting it most of the time...so that is why I go so often...I guess it's just another thing in life you have to deal w/...but as for my experience with it ...it is always good overall!
Thu, May 18, 2017 @ 6:51 AM
Mary Moren wrote:
It's now three months after my first initial iron infusion. I feel great, my eyelashes are growing back and I look like I am alive instead of pale and sickly. My 3 month labs came back with Ferritin level at 23 from a low of 2.... yes another iron infusion was ordered and I will happily get it done next week! Since my initial infusion three months ago, I too (like others here) have been the cardiologist and GI and had every test imaginable and they all came back normal. I have been told all symptoms (heart palpations, left arm numb, gut problems, restless leg and leg cramps + more!) I had been experiencing the past three years must have been a result of the extremely low iron Anemia! In the past three months after my iron infusion I sleep better, have more energy and getting back to living! However, I am curious as to how many more iron infusions I may need to be at to be "normal"... ?
For those who are still waiting or scared or thinking your levels will get better on their own... consider making that appointment as you will be healthier for it!
Mon, May 29, 2017 @ 3:00 PM
I had an iron infusion and WOW, within a couple of hours after it ended, my energy level went wayyyyy up and I was weed-eating my yard like mad! It feels like having your blood drawn, no big deal at all. I wish I had had it sooner since iron pills didn't really work, weren't absorbed through my gut. I'll get a blood iron test in 60 days to see my iron level and decide if and when to do another infusion. Nothing to be afraid of, that's for sure and you get your life back!
Mon, May 29, 2017 @ 3:20 PM
Gloria M. Segura wrote:
Well Starting Tomorrow,June 1st I'm About To Do My First Iron Infusion... I'm A Little Scared!!! Hopefully Everything Works Out For Me 😉💉😏💉
Thu, June 1, 2017 @ 2:10 AM
Thank you so much for taking the time to deliver your video to us who suffer from IDA. I too had iron infusions November 2016, due to IDA.
I have a great Hematologist and the team of nurses were wonderful at UCLA in Los Angeles. I also developed Pica on the my journey, before my anemia really peaked, I could not get enough Ice to chew on!! I not only ate ice constantly but I cracked two teeth and required some dental work in the end.
My levels were a 4.5 and the Hematologist was shocked that I "walked" into his office. But he got me immediately on the iron infusions and I feel so much better !!! now I watch my blood levels very carefully and go back to doctor every 8 weeks for test draws. So far so good.
Thanks for the website to share and learn about our IDA together.
Sun, June 25, 2017 @ 9:56 PM
I received iron infusions at the beginning of the year and was feeling good--until I got my bill. I went to a hospital-based infusion center and now have to pay my entire deductible. I'm just wondering if anyone knows whether it's cheaper to get treatment in a freestanding infusion clinic? I have a friend who gets infusions (not for iron, however) and she pays a copay for each visit.
It's my own fault for not looking into the cost before treatment (though I felt like a zombie so I'm not sure I had it in me to even look into it), but boy I wasn't prepared for this bill.
Thanks for the video-- it was really helpful for me!
Tue, June 27, 2017 @ 1:07 PM
I'm two days post first iron infusion. Like most people here have said it was much less stressful than I was expecting. I am however used to needles because I have another condition that requires blood tests every six months.
Prior to infusion my iron level was 2. I've been "severely anaemic" for over 6 months now however I've been overseas so had to delay treatment. My doctors are still looking for a mysterious source of blood loss. The day before my infusion I swallowed a PillCam to check my small intestine for blood loss. results back in a few weeks. I've also had gastro/colon stops which were clear. I don't think I'm bleeding but they still have to check I guess.
Anyhow I'm feeling pretty ordinary today. Mouth feels like it's been rubbed out with sandpaper but that's consistent with some side effect I've read:
"iron can be highly irritant to the mucosal membranes"
My guts are also rumbly with a few weird twinges but who knows that could have been the PillCam's fault!
My left arm feels achey and I've had a hot water bottle on it.
Hopefully I'll feel better in a week or two as nurse said this is how long it might take.
I won't mind going back for another infusion if I had to. It really wasn't that bad and apparently the side effects can diminish with subsequent infusions.
Fri, July 7, 2017 @ 6:26 AM
Karen L wrote:
I was given one very large Iron Infusion about 2 months ago. I was told to take two gentle iron pills a day with vitamin C. I have since developed ringing in my ears and I don't feel really good. I am afraid that I am over infused or should at least stop taking the iron pills. I'm also taking B12$4,000mcg a day. I'm thinking the B12 has accelerated the iron. Any thoughts?
Fri, July 7, 2017 @ 9:26 PM
Karen L wrote:
I had a ferritin level of 12. So I was given one very large Iron Infusion about 2 months ago. I was told to take two gentle iron pills (28mg each) a day with vitamin C. A few weeks into this I developed ringing in my ears and I don't feel good although my mood is much better. I am afraid that I am over infused or should at least stop taking the iron pills. I'm also b12 deficient and taking 4,000mcg a day of sublingual B12. I'm thinking the B12 has accelerated the iron. Any thoughts?
Fri, July 7, 2017 @ 9:47 PM
Hi! I got test results that my ferritin was a 5 and my hemoglobin was 10.2. I struggled to take several iron supplimemts for 3 weeks and it really tore up my stomach and made me horribly nauseated. 5 days ago I recieved my first iron infusion. Worst part was I had to sit there for 3 hrs. I didn't even get a bruise at the injection site. Zero side effects YAY! But 5 days out, I'm not perkier... I have same exhaustion, I started breathing easier while on the iron pills and that has continued. On day 6 of iron pills I did not want ice at all, which shocked me, after eating way more than my share for a long time. Lol I still have no interest. My only issue, is I'm scared I will not feel different, no energy, no ability to do anything. I can't even stay awake all day. My Dr. is highly questionable and wants to wait a month to test and see if I need a second infusion, which seems to go against all I've read about people getting multiple infusions and having better numbers than i. Does anyone know when I'm going to feel different? Thanks for the site, made me less afraid.
Sat, July 8, 2017 @ 6:15 PM
I have been fighting anemia for 16 years due to having my small intestine removed. 3 years ago they did a hysterectomy and gave me my first 10 weeks of Fusion treatments. I'm getting ready to start back up again and they are no less scarier than the 1st set. They do work miracles on your body. They give me more energy and I feel like a "human" again but the thought of going through the misery and pain of having the fusions again is horrible. The pain up the arm and at the IV site is terrible, mixed with the upset stomach and severe migraines, muscle pain, plus all of the mental and emotional toll it takes on you all adds up to a few miserable months.
But I had waited so long the 1st time to give in and get the treatments that I developed a heart murmur, low BP, lost my 3rd son at birth, permanent kidney and liver damage, I lost my hair, my nails were peeling off, short term memory loss from lack of oxygen to the brain and several other small complications that I have no choice but to get the Fusions when they tell me I need them.
As scary and painful as the Fusions are, it is scarier to face dying before I even have grandchildren. Good luck with yours
Mon, July 10, 2017 @ 2:13 PM
I've had anemia for years, can't take iron orally as I get very bad stomach aches so they did 2 infusions. I have to have my blood checked in about 2 weeks to see what my numbers are. It's been 2 weeks since my second infusion and I am exhausted! I don't know if this means I will need more? The doctor made it sound like 2 was the norm then I wouldn't have to come again for like a year. He said I would have to have them till I no longer have periods. How many is the "norm" for people to have? I'm kind of bummed the exhaustion has come back already, I was feeling great!
Sun, July 23, 2017 @ 10:15 PM
I'm sitting here with the IV in getting my infusion reading through this. I'm fortunate that I've had no side effects and this is my third round. It's been two years since I last had them. In our area,the norm is 5 infusions over a few weeks.
It's very sad that more doctors don't understand what IDA can do to someone. I try to always tell any primary or nurse about what I've experienced over the last 4 years so that they then have that for maybe a future patient
I'm a big believer in the infusions, if you can tolerate them. No more heart palpitations, incontrollable anxiety and depression, leg pains, and the weirdest issue by far, pica. Those are my symptoms and I can almost tell you what my hemoglobin number is by which symptoms I have and the severity of them. The hematologist was great and I would ask for a referral to one of your doctor doesn't really get what's going on. My dad also had been progressing through increasingly severe symptoms as he becomes anemic (cancer patient) and a lot of his doctors don't really get it either.
Wed, July 26, 2017 @ 9:52 AM
Stephanie T. wrote:
I had my first infusion yesterday. They did not do a test dose on me, just plugged me up and went. My first vein blew after about 20 minutes, so they spent another 30 minutes finding a second spot to go. Finally got plugged in again, then it took 4 hours to finish.
I can say that you will need your supplies to get through it! I had tv, but i was bored to tears! I was also starving by the time i left. I had an 11 am appointment and didn't eat before.....big mistake.
The only side effect i had was on my way home, my feet and hands felt like they were on fire, they swelled up and i ended up having to take my shoes and socks off. It was quite scary until i got home and could prop my feet up.
I believe that the swelling was from the fluid they used to flush all the iron the rest of the way through the tubes at the end, because until that point, I had no issues. I go back in 2 weeks for another round, so we will see if there is anything that they can do other than use the flush, or at least not push it so quickly. It felt like my arm was going to explode!
Sat, July 29, 2017 @ 9:16 AM
I had a 4 level and was scheuled for three iron infusions, spaced out by a week each. The procedure was very easy, but I am used to IV's and needles as I also have Parkinson's and other issues, necessitating lots of bloodwork and testing.
Be sure to bring a book or smartphone or ipad, as well as snacks and drinks. My infusion each time lasted almost 4 hours, but it appears that depends on your doctor's order. The lady next to me only took an hour. I don't mind the time, it gets me out of the house and I get to read or play games or watch a movie during the time.
I had no ill effects from the infusions other than a slight bit of diarrhea shortly after. However, my ice pica remains and my energy level is still at zero. I see my GP on Thursday for followup and bloodwork. I don't think I am through with my infusion journey.
It appears many people have many more sets, like 5 to 10 infusions. I wonder how the number of infusions is determined. Just curious!
Tue, August 22, 2017 @ 10:54 AM
You all should read up on IV iron as new forms of the iron solution have less risk and are more effective. From the National Institute of Health (NIH):
I had a mystery IV iron treatment in the hospital in 2005 while waiting for something else to be diagnosed. It alleviated the shortness of breath and helped my energy. I had low hemoglobin/hematocrit and chronic anemia, presumably from the heavy periods I was having due to massive uterine fibroids. (I need to try to pull my records to figure out what was done then, b/c it was the ONLY treatment that ever worked).
A few months later, after it wore off, a hematologist sent me for four weekly IV iron infusions. I assumed I was getting the same stuff, but felt no effect and the iron seemed to disappear! We repeated it a few months later, with even less effect.
I think he gave me Dextran, which I now read has higher risks (anaphylactic shock and more) and lower efficacy than the newer options. (And that was known in 2006!)
Reading this article I learned that one of the risks of IV iron is infection--it seems bacteria love it. Several months later, after developing a mystery condition that included months of night sweats, low grade fevers, unbearable nausea leading to a large weight loss as I slowly starved to death from not eating...emergency surgery "discovered" a massive infection in a dying fibroid tumor. Several LITERS of fluid and pus had filled my uterus...emergency antibiotics of every type had to be given in multiple IVs simultaneously. I was told I was lucky to be alive, between the malnourishment and the undiagnosed (over and over) sepsis and then the surgery that released the mess into my abdomen.
They were puzzled at how the bacteria grew so well so far inside the tumor...now I wonder if it was all those IV iron infusions!
Be cautious. Make sure your doctor is up on the latest info on the risks and the better iron formulations. Educate yourselves. Read multiple websites--especially .gov and .edu ones for the most expert and reliable info.
Best wishes and good health to all.
Thu, September 21, 2017 @ 7:32 AM
I am scheduled for my first infusion tomorrow and I am soooooo NERVOUS for the risk of infection and gastrointestinal side effects. I'm SEVERELY emetophobic and also have a rather severe anxiety/panic disorder on top of that, so I'm really, really worried, but I can't keep living like this. To top it all off, I am living in a foreign country (Austria) where I don't speak the language that well. I'm afraid I'm going to throw up, I'm afraid those around me will throw up, and I'm afraid I'm going to get a massive infection. I'm planning on taking the entire day off tomorrow and not go to class so I can be home in case anything happens. I might need to ask for a script for some reglan and valium since I'm running low. I've got my immodium, ibuprofen and gas pills. I just really hope I don't have any nausea or infection!
Tue, October 10, 2017 @ 11:27 AM