Author Topic: IVIG at home for first infusion? Is this ok? I'm scared....  (Read 1538 times)

littleone

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IVIG at home for first infusion? Is this ok? I'm scared....
« on: March 30, 2014, 08:49:47 PM »
Hi guys-

My dr just submitted for IVIG for a few months. I have a cluster of AI issues. 

My question is this: is it ok to do at home the first time??

I am so afraid and want to be at infusion center for the first time (then if ok, home seems much better) but I think that home is all my insurance will cover.

Should I fight to be in the clinical setting for the 1st 2 infusions or am I making a mountain? I just wonder how my body is going to tolerate it and we don't live near a good hosp. It's an hr drive. 

Thanks so much for any feedback.
Littleone

Helene

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #1 on: March 30, 2014, 11:04:00 PM »
I've always gotten mine at home. A nurse administers it and she always makes sure there are epi pens in case of anaphylaxis. It's much nicer at home. I can lie on my bed, listen to music, read and talk to my friends on the phone. I have never had a negative reaction to IVIG and  I've had it 4 times now. I think you are lucky not to have to go to the infusion center.
73, Sjogrens, hypothyroid, multiple allergies, osteoarthritis,, cvid. Plaquinil, Synthroid, Zyrtec, Naproxen, Prozac, Cymbalta, Ambien, Vit D, B12, C, Fish Oil, Pancreatin; prn Tramadol.

anita

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #2 on: March 31, 2014, 04:22:13 AM »
For 9 years starting back in 1997, I received my IVIG at home...for the very reason you mentioned.  The cost is significantly less doing it at home, vs an infusion center...by a couple thousand dollars per dose.

The nurse is specially trained to do these types of infusions and therefore prepared for any possible reaction.  I'm sure she will start out very slow and only increase gradually IF you are doing ok.  Actually the care you'll receive (one on one--with no other patients to care for) means you'll have her undivided attention.

You'll be fine...and you'll enjoy doing so in the comfort of your own home.

I am doing my IVIG in an infusion center now (per insurance), but it sure would be nice to go back to home infusions at some point.  However, I'd probably miss the visiting aspect with other patients (usually they're receiving chemo and there all day too).

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

anita

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #3 on: March 31, 2014, 04:28:38 AM »
I should have added:  Most reactions to IVIG don't actually occur DURING the infusion.  They happen within a few days afterward.

Reactions that do happen during the infusion are almost always rate related and simply slowing the infusion down will ease any symptoms.

Just pay attention to how you're feeling afterward and report to your doctor if anything is bothersome.

Good luck and keep us posted.
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

Carolina

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #4 on: March 31, 2014, 05:44:29 AM »
Dear little one,

IVIG  Welcome.  I have IVIG infusions.  I started at home with subcutaneous infusions.  A nurse came to train me, and I was on my own after about three weeks. 

HOME INFUSIONS I really liked doing the home infusions.  It was quick and easy (about 2 hours max) and painless.

EMERGENCY PREPAREDNESS.  A severe reaction is unlikely, and would probably occur after the first IgG infusions.  That is why there is a nurse with you at the beginning.

I was given two Epi Pens and bottles of liquid Benadryl with hypodermic needles to have on hand in case of a reaction.  I didn't have to use them, but if I had, I would have used them and called an ambulance.

In the infusion community subcutaneous infusions are called SubQ.  (In England, Subcut).

Everything Anita said is true, and I will add that I think you're actually safer at home.  Strangers aren't touching you and you are not around other patients!

Because I was having a reaction like a 'flare' about 48 hours after the home infusions (not scary just miserable) my Immunologist switched me to monthly IVIG at an infusion center.  That way I only have to deal with a reaction once a month, rather than weekly.

IVIG is done inter-venously and you get 4X what you get weekly with SubQ.

Right now I'm also taking Medrol (a form of Prednisone) to suppress the 'flare' like reaction even after the IVIG at the infusion center.

Since I started IgG infusions I have not had ONE infection.  That is key.  My health is much better.

My Immunologist hopes that after a while my Immune System will 'calm down' and stop having 'flares' in response to the IgG.   Since the IgG is keeping me so healthy, I certainly hope this will be the case.

Please share your questions and concerns, Nellie.

Hugs, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

LucyD

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #5 on: March 31, 2014, 06:08:08 AM »
Littleone, keeping you in thoughts and prayers. I don't have any experience with IVIG, but I can sure understand your concern. Glad others with experience have given you good feedback.
Hugs.
LucyD
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
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quietdynamics

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #6 on: March 31, 2014, 07:24:43 AM »

littleone.. just lending you support.

Don't get scared of an Epi pen, people with reactions to bee stings, etc. need to carry them (DH being one.)

Folks do what they need to do.

Wishing you well.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

littleone

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #7 on: March 31, 2014, 07:41:09 AM »
Thank you all so much for both the advice as well as the support. It means so much. I'm scared to have it but even more frightened to keep on as is (which is essentially not living bc too sick).

You have provided much need confidence.  I'm taking deep breaths and repeating my new favorite quote, " Courage is resistance to fear, mastery of fear, not absence of fear" --Mark Twain

Hugs of gratitude,
Littleone

irish

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #8 on: April 01, 2014, 11:14:23 AM »
Stay calm, embrace it, learn what you can about it and do not fear it. I have done this monthly for 7 years and it is part of who I am. The more you fear something the more apt you are to have some weird reaction or at least conjure up what you think is a reaction. I was a worrier when I was young, but when we get sick and needs things to keep us up and running we just learn to go with the flow. There is no need to shake and quake. They have been doing these infusion for well over 20 hers and they know a whole lot about them.

Drink plenty of fluids a couple of days prior to infusion and couple of days after infusion. Take tylenol for the achy-flu like feelings that you might have. People can tell you all kinds of horror stories and chances are you will never experience that yourself. I have had a severe allergice reaction to my IVIG in the infusion center for which I was medicated and later sent home. They switched me to a different product the next time. IVIG is high complex---preparing the product is the buggy--- and once we are sitting and getting the IV read magazines, talk to the people next to you. Our infusion center is more or less a social time for most of us. Drink coffee and visit with one another plus take naps. Relax and don't make a big deal out of it. There are many other medical procedures that are much, much worse. If you have a laptop take it with you cause you will want something to do. It takes me 6 hours as I get 80 grams monthly. Time to read, etc. Good luck. Irish

SjoDry

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #9 on: April 01, 2014, 01:17:31 PM »
Littleone,

I had your same fears (we probably all did at the beginning of our IVIG/Sub-Q journeys). Do you know how sometimes you build up this big fear over something...and then after you do it, you say, "Oh wow...why did I get so wound up"? 

That's what my first infusion was like. I went to the infusion center, took my tablet computer and also had a TV while I sat in one of those leather, reclining lounge chairs. I had heard that about the most likely negative reaction, is when the meds are put in too quickly. I think that is what happened to me...I lost my cookies. While it wasn't pleasant, it was no big deal.

I decided that I definitely wanted to give myself the Sub-Q infusions. The first two infusions, I had a nurse at my home. She told me that she would come as many times as I felt that I needed her to. As I mentioned in another post, I wrote very specific directions down for myself & even took pictures with my cell phone camera. I was ready after the 2nd time that the nurse had come to my house.

I was a little nervous by myself at first...but I was successful. I don't find the sub-q needles too uncomfortable. In fact, finding a vein in my arm for an IV is ridiculous & I am always stabbed 2 or 3 times minimum. So I was definitely motivated for my Sub-Q.

I bet you'll be surprised at how easy it goes  ;)

But I will be doing a Sjoggie Cheer for you!
SjoDry
« Last Edit: April 01, 2014, 02:14:27 PM by SjoDry »
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

littleone

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Re: IVIG at home for first infusion? Is this ok? I'm scared....
« Reply #10 on: April 01, 2014, 05:25:29 PM »
Thank u so much and especially for the cheer! This community s does wonders for quelling my fears as well as being a great resource!  ;)