News:

Just a reminder: if you haven't signed in for six months or more, please do so if you wish to remain active...no need to post, just sign in so we know you're still interested.

Main Menu

Had first iron infusion today.

Started by irish, February 21, 2017, 11:00:35 PM

Previous topic - Next topic
Print
Go Down Pages1
User actions

irish

February 21, 2017, 11:00:35 PM
I have to tell you I was a little hyper over having an iron infusion. Over the years I have read things about the infusion that made me think I never wanted to have one. Well, I have dealt with my anemia off and on for about 12 years. I did have anemia in nurses training with hemg of 10 something. It could be that I had some autoimmune going on then without knowing it as things reved up when I was about twenty on. Also the anemia during pregnancy etc.

The years since 2005 or so were anemia that responded to oral iron meds. The past 2 years or so I have been fighting the battle with the low hemg and I would get it up to high 11's or 12 something and then it would go back down. Finally the past 6 months or so have been little response. In fact, the past 2 months with oral iron I have gone from 11.3 to 10.1 and my ferritin went from 20 to 17. Back in 2005 my ferritin was 6 so that was really low.

Saw hematologist yesterday and had the IV iron this afternoon. I was given 250 ml's of Injectafer. It was to be given in 15 minutes but I talked to doc about doing 30 minutes as I have had to extend my regular IVIG from 5 1/2 hours to 6 1/2 hours because of side effects. I am older and cant take the influx of fluid. I have seen cardio and regular doc and had testing and the chest pain and shortness of breath I experienced have decreased or stopped with the slower infusion rate with IVIG plus adding 20 mgm Lasix at the end of my infusion.

Anyway, I had just a tad of a headache plus the weird smell. Nurse never told me---just waited to see if I got it.lol  I was sitting there reading and I started to smell this strange smell that was vaguely familiar. Finally asked and she said it was from the infusion. I could smell a musky smokey odor plus what seemed like the smell that occurred when hubby and sons were welding. The nurse said it was the smell of the iron. I soon had a taste in my mouth that came and went in about a minute.

It went well and I was exhausted when it was over as in like body fatigue and stress from the treatment. Sat in my car a bit before I drove home just to get my land legs back. I am to get one more infusion next week--7 days apart and then it takes up to 4 weeks to get the hemg up and be feeling better. The good thing is I don't have to take iron tabs anymore. Will probably end up doing this again.

My hemg has been down and my TSH was 8.6 or so I have felt like a truck hit me with fatigue. Also had to have a HBT or Hydrogen breath test yesterday to check for infection in my small bowel. I was put on oral Flagyl tabs for 10 days. Also have more testing to check for  Exocrine pancreatic insufficiency as they think the pancreas isn't putting out enough enzymes and I an having some malabsorption issues in colon that is keeping me from absorpting the iron. Sooo, hopefully life will improve around here soon. Haven't done much for months and can't believe how much I went downhill since October. Take care all. Irish

Maria3667

#1
February 22, 2017, 12:55:56 AM
Good luck to you Irish! Hope the injections give you your life back... TSH of 8.6, think I'd be dead by then...  :o
54. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02) - changed to Sicca ('20), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18), Pilocarpine, thyroid meds, 12.5mg quetiapine. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Liz D.

#2
February 22, 2017, 06:30:58 AM
Irish,

I sure hope these infusions work for you.  I am seeing a hematologist on Monday as well because my anemia is back again but with much lower numbers.  Im unable to take iron supplements because for some reason they raise my liver enzymes. 

I'm anxious to see if I need iron infusions as well.   I'm just so sick of being tired and short of breath! I climb a flight of stairs in my home and have to catch my breath before going on.  I'm getting nothing done!

Please keep us posted as to if you start getting your strength back.

Liz D.
60 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 200 mg; Levoxyl 100mcg; Evoxac, Symbicort, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., vitamins, calcium, flaxseed/cod liver oil, L- lysine, iron

Joe S.

#3
February 22, 2017, 07:30:13 AM
Good luck with the infusions.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

LisaInMidwest

#4
February 22, 2017, 08:17:11 AM
Glad it went well for you, Irish! Hope you perk up soon.

Lisa

wendyoh

#5
February 22, 2017, 09:50:13 AM
hey Irish thanks for sharing, you are a warrior driving home after etc Sending you godspeed for improvements :)
sjogrens, cervical stenosis, bulging cervical discs 4 level, DDS, DJD, emerging vertigo, cfs, fms, gerd, plantar fascitis, corneal erosion, some other stuff :)
not trained in medical field so just share my experience and opinions as a consumer and lay researcher trying to get more well-ness

Sharon

#6
February 22, 2017, 11:32:16 AM
Glad you found something that may help you irish!
Can't believe you drove yourself home after an infusion...wow!

Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

irish

#7
February 22, 2017, 03:55:57 PM
I drive 2 hours up to my son's house and stay overnight and the next morning I leave at 7AM and drive 25 miles to my infusion center in the cities. My IVIG takes 6 1/2 hours and then I drive back to my son's house and stay over night for a night or two and then drive 2 hours home. I am pooped after all that but it gets me out of the house and I get to see the grandkids.

I have an infusion center about 25 minutes from my house in so. mn and I will eventually take my IVIG down then when the drive is too much for me. I have my small infusions at this place and I getting to know it. My place in the cities is like family as I am going into my 11th year of IVIG up there and see the doctor there also. Take care all. Irish

anita

#8
February 22, 2017, 08:48:50 PM
I have received IV iron for a number of years since my gastroparesis makes absorbing nutrients difficult and my anemia wasn't well controlled.  I get Ferrlicet.  I'm actually getting the second of 4 infusions on Friday before my IVIG.

I hope it makes you feel better.  It is far more effective than oral...if you have any stomach issues.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carebear

#9
February 22, 2017, 10:39:53 PM
I too hope you feel better after these infusions, Irish.  I'm not the least bit surprised you drove yourself home afterwards.  Not one little bit!

Your description of the strange smell you experienced rang a big old bell for me.  Not at all related I'm sure, but when I am feeling particularly unwell, that is exactly what I smell all the time.  In fact it's been following my nose for the last four days.

Here's hoping you can get that red room painted this summer, with all your new pep!

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

susanep

#10
February 22, 2017, 11:11:00 PM
Irish, I hope and pray this helps you feel better. What a wonderful blessing that would be. I am glad all went well.  :)

hugs
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

katie1111

#11
February 23, 2017, 06:01:21 AM
Thanks for sharing.  I have had issues with anemia to.  At one point my hemoglobin was in the low 9 range.  Luckily I have been able to tolerate oral iron and my hemoglobin has been in the 11 range.  But just a few weeks ago it dropped to 10.7.  I was starting to worry about what happens if the pills don't work any more.  Your post was reassuring.

Katie1111

SjoGirl

#12
February 23, 2017, 04:57:52 PM
Irish, I have a family member who is receiving infusions and having had issues with anemia myself am glad to know it's an option.

Here's hoping that the iron does its job and that you feel better soon, you deserves a break!
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.
Print
Go Up Pages1
User actions