I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: justagirl2325 on July 06, 2016, 11:21:56 AM

Title: Iron deficiency - turns into iron allergy
Post by: justagirl2325 on July 06, 2016, 11:21:56 AM
Our home hemo in Ontario requires him to go to the hospital once every 8 weeks for dialysis there to assess him.  The last time, all his numbers sucked and they increased his Aranesp to weekly, advised him to do more dialysis, and gave him IV-Iron during dialysis there.  They had him come back today (after four weeks) to get more IV-Iron during dialysis.  I remember at the time the two nurses discussed rather than having to come back that maybe they could give us the IV-Iron and we could do it at home.  One over ruled the other and they didn't give it to us...not that we pushed.

Well today, during dialysis at the hospital he developed an allergy to the iron like the one described here "Severe/life-threatening HSR (anaphylaxis): an anaphylactic reaction may be of sudden onset, or occur as a rapid worsening of the features of a moderate HSR. There will be increasing wheeze, due to bronchospasm, sometimes with stridor associated with laryngeal edema. Increasing tiredness and distress will occur, and periorbital edema may develop. Increasing hypoxia leads to confusion. If the HSR worsens, pallor, clamminess, cyanosis and loss of consciousness progress quickly to cardiac and respiratory arrest. During this time, the pulse accelerates and the blood pressure and oxygen saturation fall." 

He describes it as confusion, BP drops, passing out and he received shots to wake him up (adrenaline ?? I wasn't there). 

Ya, that would have been a lot of fun at home.  I really hate dialysis.
Title: Re: Iron deficiency - turns into iron allergy
Post by: kickingandscreaming on July 06, 2016, 12:50:24 PM
That sounds really scary.  Glad you were somewhere where it could be handled.  I had no idea someone could be allergic to iron since it is part of our bodies.  Probably not from the iron itself, but from some carrier or adjuvant.  Regardless, I'm happy it turned out OK.
Title: Re: Iron deficiency - turns into iron allergy
Post by: cassandra on July 07, 2016, 01:15:08 PM
What an awful thing to happen, is he okay now?

Love, Cas
Title: Re: Iron deficiency - turns into iron allergy
Post by: Charlie B53 on July 08, 2016, 06:39:40 AM

I get IV Iron a few times a year.   Every time the Nurse puts a small amount in my line for a test and waits to see if there is any reactions.  Only after she is convinced I am still fine does she start the Iron IV flow.

I am surprised to hear your Husband developed this adverse reaction but from seeing how cautious my Nurse is it indicates this is not an unknown problem and one they are cautious about.  Very glad they countered his reaction timely and he is now OK.

This just proves how cautious we need to be with everything we inject into us.   Especially at home without the well trained support staff immediately at hand.

Title: Re: Iron deficiency - turns into iron allergy
Post by: justagirl2325 on July 08, 2016, 11:29:16 AM
Charlie sounds like you have a very smart nurse. 

He is ok now (I think...he's been working out of town the last two days - nothing seems to slow him down).
Title: Re: Iron deficiency - turns into iron allergy
Post by: Fabkiwi06 on August 04, 2016, 10:05:16 PM
That must be what all the signs posted in our clinic rooms for how to treat an allergic reaction are for. Very scary! I'm glad he's doing well and that he was somewhere where he could get the immediate treatment to take care of it.
Title: Re: Iron deficiency - turns into iron allergy
Post by: PrimeTimer on August 05, 2016, 07:19:41 PM
Yikes! Sorry to hear about, what an ordeal! Thanks for sharing this. I told my husband about it. He always says he has no trouble with his IV Iron treatments but I shared your experience with him and made him promise to be cautious. Apparently acquiring an allergy to a medication or even to food is not uncommon. I use to take Gabapentin with no problems. I started feeling better so stopped taking it. About a year passed by and I felt I needed it again except that time, my eyes swelled up. Looked like I had golf balls under my eyelids. Doc said it was an allergic reaction. Another example is that all my life I have loved seafood until a few years ago I had an eggroll with tiny bits of shrimp in it. Ended up in the hospital. Had an extremely violent reaction. Apparently I've acquired an allergy to seafood or shell fish. Anyways, as your husband has discovered, a person can develop an allergy to something they otherwise weren't allergic to and reactions can be verrrrry serious. Hope you both are feeling better and relaxing now. Whew! As if life isn't hard enough...





sp mod Cas
Title: Re: Iron deficiency - turns into iron allergy
Post by: Fabkiwi06 on August 06, 2016, 03:33:33 AM
I've heard a sort of old wives tale about something like you can develop new allergies or outgrow an allergy every 7 years. That's probably not completely true. I do know that I used to get super itchy around cats when I was younger, and I don't anymore. Also, dairy never used to make me nauseous. So I do think there is a little bit of truth to the whole "changing as you do" aspect. The human body is strange like that.
Title: Re: Iron deficiency - turns into iron allergy
Post by: kickingandscreaming on August 06, 2016, 06:30:00 AM
Allergic reactions are very flaky.  You can develop a tolerance for things that used to send you to the hospital.  And the other side of it is that you can "out of the blue" develop an allergic reaction to something you've safely encountered all your life.

I once went on diet and was eating a lot of shrimp cocktail as a snack (the kind that comes in a small glass jar with a tomato sauce).  All was well until one night I treated myself to some fresh shrimp from a local fish monger.  As I was peeling and deveining the shrimp, I noticed that my hands were itching.  But I kept going.  After I ate them I immediately started going into anaphylactic shock.  Fortunately I had my wits about me and had some strong antihistamine in my house.  So I averted a full blown attack.  At the time, I had no idea what danger I was in.  I stopped eating any shellfish after that.
Title: Re: Iron deficiency - turns into iron allergy
Post by: PrimeTimer on August 06, 2016, 09:50:04 AM
Our home hemo in Ontario requires him to go to the hospital once every 8 weeks for dialysis there to assess him.  The last time, all his numbers sucked and they increased his Aranesp to weekly, advised him to do more dialysis, and gave him IV-Iron during dialysis there.  They had him come back today (after four weeks) to get more IV-Iron during dialysis.  I remember at the time the two nurses discussed rather than having to come back that maybe they could give us the IV-Iron and we could do it at home.  One over ruled the other and they didn't give it to us...not that we pushed.

Well today, during dialysis at the hospital he developed an allergy to the iron like the one described here "Severe/life-threatening HSR (anaphylaxis): an anaphylactic reaction may be of sudden onset, or occur as a rapid worsening of the features of a moderate HSR. There will be increasing wheeze, due to bronchospasm, sometimes with stridor associated with laryngeal edema. Increasing tiredness and distress will occur, and periorbital edema may develop. Increasing hypoxia leads to confusion. If the HSR worsens, pallor, clamminess, cyanosis and loss of consciousness progress quickly to cardiac and respiratory arrest. During this time, the pulse accelerates and the blood pressure and oxygen saturation fall." 

He describes it as confusion, BP drops, passing out and he received shots to wake him up (adrenaline ?? I wasn't there). 

Ya, that would have been a lot of fun at home.  I really hate dialysis.

Did they say they will substitute the IV Iron with something else since he's allergic to it? Am just curious what they can give a person who needs iron but is allergic to it, or maybe there are different kinds ???
Title: Re: Iron deficiency - turns into iron allergy
Post by: justagirl2325 on August 08, 2016, 08:28:46 AM
Nothing as of yet, he doesn't go back now until September 29....just staying on the increased does of aranesp so far.  Good news though is that he's off the warafin (blood thinners) so I can feed him spinach daily again.  Just like popeye he'll get his iron  :)
Title: Re: Iron deficiency - turns into iron allergy
Post by: Whamo on March 04, 2018, 03:48:52 PM
I hate anemia.  I get it once in awhile.  My wife is a nurse that gives me my shots every two weeks.  It's such a drag.  I get into my writing, and then BAM!  I sink into the chair and I can't get up.  I've really been struggling with my two big screenplays.  I study the craft, and it's taking me years.  I wrote a screenplay that got past the reader on my first try.   Then I wrote three ones that fizzled out.  I let it go for awhile.  I published a book about Disneyland and got my confidence back.  But now I'm struggling with my two pet projects.
Title: Re: Iron deficiency - turns into iron allergy
Post by: Paul on March 04, 2018, 04:44:31 PM
Nowhere near as serious as his allergy, but while in hospital I discovered that spending a couple of decades or so avoiding products with added glucose (I'm diabetic) had left me with a glucose allergy. Not in itself life threatening, all I do is vomit it up (weirdly I even vomit if given it intravenously).
Title: Re: Iron deficiency - turns into iron allergy
Post by: Charlie B53 on March 04, 2018, 06:02:54 PM

Shellfish.  Partner and I used to commercial shrimp every year.  This has been 20 odd years ago, I was a bit younger.  Wife could NOT eat the fresh shrimp without breaking out.  Somehow I figured out she was allergic to the iodine in the fresh shrimp so I would 'soak' them in a pan of ice water.  The water would leach out iodine staining the water black.  Change out the water, again and again, until no more color.  She could eat it just fine.

It may be that some of the 'processed' shellfish in canned or bottles may have enough iodine leach out during processing.

Stay careful.

And I still really miss living on the coast and spending so much time out on the boat.  Can't eat like that here in the mid-West.
Title: Re: Iron deficiency - turns into iron allergy
Post by: cassandra on March 04, 2018, 11:58:56 PM
In the last 12 months I've had 2 different types of iron infusions. InterFer and MonoFer. The first dose of InterFer kept my Ferritin nice and high for 7 months. The second dose for 2 months.
So they tried MonoFer which is like 10% of the price of InterFer. I turned out to react not very well to MonoFer. Got peritonitis like symptoms about 4 hours after receiving the first dose. After calling the clinic I'm allowed to go back to Venofer which is about 10% of the price of MonoFer.


I've had Venofer for 20 years without any probs! Also at home. But it's very cheap and money has to be made. I still have to get it in clinic, which is okay now. Anything is okay, just stop experimenting please.