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Yikes! I start IVIG infusions next Thurs. what questions should I ask??

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Unread 06-29-2007, 08:02 PM   #1
Roxie2007
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Default Yikes! I start IVIG infusions next Thurs. what questions should I ask??

HI!!
I know some of you are receiveing the IVIG infusions for your neuropathy, and I'd love to pick your brains....so to speak
My insurance turned us down flat last week but today decided that I do need the infusion treatments. So I start them next Thurs. The insurance O.K.'d the infusions for once a week for 3 months and each infusion will be 4 hrs. long. Does this sound right? I thought some people were doing them once every 2 weeks for 2 hrs? Anyway.......please if you have info or things I should be asking Critical Care Infusions before they start....I'd love to hear.....also what side effects have you had or can I expect to have?? Thanks all! Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Unread 06-29-2007, 09:20 PM   #2
dahlek
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Default Roxie, I SURE hope

you get some relief from it. I know I would not be walking at all were it not for IVIG.
Here's a link to a site put out by the Immune Deficiency Foundation for nurses..It should help give you some of the basics.
http://www.primaryimmune.org/pubs/nurse_guide_igiv.pdf
This might be helpful as well:
http://www.resourcenurse.com/feature_ivig.html

Be sure first, that you have NOT had a flu shot in the last 6 months. Tell your prescribing doctor ASAP if you have had one.

Next, to be safe and have an easier time of getting the needle into you for the infusion, the day before you start, drink lots of extra water. If you are starting infusions in a hospital, don't worry about pre-medications. If you are starting infusions at home, have a bottle of Tylenol and of Benedryl handy for pre-treating. These will help you not get either a rash [very itchy] or a headache [real bad ones] due to the infusion....these are common reactions.

IF anything doesn't seem/feel right, do not hesitate to bring it to the nurse's attention right away. If you are at home, be sure to set you and the nurse down comfortably in front of the TV to kill time. It's interesting the first few times, after that it's a necessary boring time spent.

Hope this helps! - j
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Unread 06-29-2007, 09:28 PM   #3
Roxie2007
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HI! Thanks so much for the quick response and the websites!
Are the infusions in any way taylored to the individual patient?
I will have the infusion at an infusion center. How do you get them done at home? That would be much more comfortable when they have to be for 4 hrs!
Are your infusions for 4 hrs? Are they once a week?
I'm really scared about having this done. Did you get the headaches? Do you still have side effects? Thanks for all the info!!! Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Unread 06-29-2007, 09:56 PM   #4
dahlek
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Default Dose is usually measured out

by body weight only...to the very last drop! So this is a kind of time you can not lie about it.

My first infusions were at very low doses of 4-6 hours a day for four days. That's to see what sort of bad or good reactions you mite get. You are watched pretty closely for BP, temperature, skin flushing, problems breathing, diahrea, headaches and nausea. After the first couple of 'rounds' [months] the rate that it's infused may be sped up as long as you don't have any reactions.

INfusions at first should be done in a hospital or doctor's office [some doc's have 'infusion suites'. This is done for safety's sake, if you do get a reaction right away you are in the best place to have it taken care of. If someone could drive you, drop you off and pick you up for the first time or two...I'd recommend it highly. Once it's found that you don't get any bad reactions [for me, my usual has been a bad migraine-like headache if the infusion is done too fast] you can talk to your doctor about having it done at home - but it may depend on your insurance's terms and conditions as well.

Not all folks get relief right away. I did so within the first hour of infusing. For some people it can take 3-6 months to feel good effects. I felt much less burning and 'muscle tightness' that is ever-present in the feet and legs for me. I reserve 2 days each month for my infusions [doctors come second to this!]. They last about 3 hours from start to finish and I usually take a 2 hour nap afterwards [I'm infused at home now] because I have to take 3 Benedryls to avoid side effects - napping after also sort of lets the stuff go to work.

Another good source about IVIG is the following: http://www.igliving.com/
This is a magazine published by many of the IG makers and you can read many of the back issues to learn more about how it's made, who uses it, and for what medical conditions....You are going to be a member of one very special, select group of folks who find IVIG a life saving treatment. I do hope that you get good results! We both will be getting infused next Thursday!

To read up a bit more here, use the 'search' feature on the top dark blue bar -click it and in the space -just type in IVIG and read away on other posts about it...Melody went thru a similar Q& A last Jan/Feb - I think, and you can read all those posts.

Wishing you really good results! - j
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Unread 06-29-2007, 10:00 PM   #5
MelodyL
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Roxie.

The reason you are having this at an infusion center is that initially, they will monitor you to see how you tolerate the infusion.

Alan went in the hospital for 5 days for his first 5 infusions. He tolerated them very well. He then began home infusions (you might also, don't know if your insurance will want you to always go to the infusion center).

When you do home infusions, you get a package in the mail with all the meds (you put the meds in the fridge). This will arrive a day or two ahead of the infusion. You will get pre-meds. Benedryl and Tylenol. Follow instructions.

And make sure they infuse at the rate prescribed. If it says 4 hours. THEN YOU GET 4 HOURS. not 3. Don't let anyone rush you, you might get a headache (that's why the tylenol).

Alan got a fever after one of his infusions. But for all the others, all he got was a slight headache. Everyone is different.

Some people get infused twice a month, some get it once a week. Depends on what your doctor prescribes.

Just recently Alan got reduced from two times a month (they called it a double load), to once a month. He also just got the pump.

So ask all your questions and don't worry. Alan's balance actually got better. So for him, this IVIG thing is a good thing.

Wishing you well.

Love, Melody
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Unread 06-29-2007, 10:31 PM   #6
Roxie2007
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HI Mel & Dahlek,
It's SO great to know that I have you two as close as the keyboard when I have more questions...which I'm sure I will! I'm scared and worried about taking this step but feel it's a necessity for my recovery. I SO hope I don't have any bad reaction to the infusions. I've never had good luck with anything (kinda like the ol'saying about "if it weren't for bad luck......") well that's me! LOL So please cross your fingers, ring the chimes and burn the incense for me!!
I hope eventually the insurance co will let my infusions be done at home. Roxie
__________________

.


Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Unread 06-29-2007, 10:48 PM   #7
shiney sue
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This time you will, Alan and dahlek know what there talking about,just
relax and suck up the energy. Why you should of seen the pictures
of Alan. and be glad your insurance is paying for it. I thought you
might of been on the roof with all the rain. Sue
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Unread 06-29-2007, 11:10 PM   #8
Roxie2007
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HI Shiney Sue!
We are lucky here. We haven't had the heavy rain here that Marbles Falls, TX. has gotten. It looks like it's going to be a very wet weekend though.
I'm SO glad the insurance came through for the IVIG...we really thought we were going to have to go for the appeal. Now I hope all goes well! Roxie
__________________

.


Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Unread 06-30-2007, 02:28 AM   #9
BEGLET
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Default Hi Roxie

Another IVIG'er here too - and hoping it helps you! The sources that Dahlek has listed are excellent resources, read up as much as you before you start - somtimes you know more then the nurses...

When I first starting IVIg 1 1/2 years ago, they did five rounds in the hospital as a day patient (again med and amount and rate picked by my doctor for my specific needs).... but since I can no longer drive its much easier to me to have them at home, so then did that.... I was getting infusions once a week most of last year, we took a break because of some other health issues etc. - but am starting up again once every two weeks... I'm going to try a different medicine that we may be able to infuse faster (the former one took 4 1/2 hours)... this one we'll start at four but see in a while if we can go down.... I do get side affects - but they seemed to get better as time went on... always really tired day of infusion, due lots to the meds and I real woozy afterward - usually by noon of the next day I'm starting to feel better (just plan on sleep).....

They waited many years to start this treatment on me (six) - so I have lost my sensory nerves, thus balance and have to use assistance to get around.... however, the IVIG did add stength, and the doc feels that he sees an improvement in my arms.. also, without the IVIG the tingling and numbness is much worse in my legs. As said above, some see dramatic improvement, others not as much, but I think lots depends on how severely you are already affected.

I hope its a good experince for you
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Unread 06-30-2007, 06:16 AM   #10
daniella
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I have nothing to add info wise but can understand your fears but if your docs think it can help it may be a good thing. You will be in my thoughts and I hope in your real life your getting lots of support and comforting.
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