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Update on IVIG Infusions


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#1 mollie

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Posted 31 December 2010 - 12:37 AM

Well, my last infusion did not go as well as the previous ones. I had a very bad headache for over a week and really got scared that I was not going to feel as great as I had during the past couple of months with the infusion. After a not so good week, I started feeling so much better and my level of energy is way up again (that's good) but was disappointed. Going to check on the manufacturer of the infusion drug and ask them to slow down my January infusion. Still very optimistic because my energy level is still better than it has been for several years.

Thank you for listening.

Mollie


#2 Joelf

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Posted 31 December 2010 - 06:05 AM

Hi Mollie

Sorry to hear that you didn't get such a good response to your last IVIG infusion.

At least you've been feeling a little better now and it sounds as if it's still helping you despite a slight blip in the treatment.

Do let us know how your January infusion works out and may the New Year bring all good things to you. :)

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#3 janey

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Posted 31 December 2010 - 06:17 AM

Mollie,
WOW! A week of headache! That's not good. That did happen to me once and it was because the nurse thought he knew better than the protocol and that I could take a faster flow rate than called for. He ramped me up every 10 to 15 minutes rather than the protocol of every 30 minutes and was able to cut 2 hours off the total infusion time. I felt horrible for a week, just like you. Please make sure that the proper protocol is being used. Each manufacturer has a different protocol because the solution percentages differ. The one I'm doing now starts me at a very low flow rate and ramps up every 30 minutes. It takes about 3 hours to get me to maximum flow rate at which point it goes pretty fast. Please ask to read the manufacturer's protocol and talk to the infusion nurse to make sure you both agree. I have a copy of the protocol in my records and study each time before I go in. Let me know what you find out. Happy New Year Darlin!
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#4 Amanda Thorpe

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Posted 31 December 2010 - 06:19 AM

Hello Mollie

Sorry about the headache, having had migraines previously I don't underestimate the impact an ongoing headache can have. I'm glad that your energy levels are up and hope they stay that way!

Take care and keep posting.
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#5 debonair susie

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Posted 31 December 2010 - 06:49 AM

Hi Mollie,

You are very wise and janey confirmed that with her post with her experiences with infusions. I like your awareness and the fact that you will be asking about the protocol of the particular drug they are using, in your case. Obviously, the person doing the infusion, has no idea of how this can affect a person or they would be more conscientious about how they infuse. :crying:

Already you are demostrating your advocational abilities, Mollie! Good JOB!!! I have every confidence, in that you will do great on this front!
Please let us know how your next infusion goes.

(I'm also glad that you are feeling better after your week of having to deal with the headache). Though I've never had an infusion, I HAVE had migraines that lasted for DAYS and it was miserable! (It turned out I found out the culprit...I am allergic to Aspertame).
Special Hugs,

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#6 Dorothy

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Posted 31 December 2010 - 01:14 PM

Hi - sorry you're going through that. Hope it goes better next time.

Did the nurses tell you what brand name the pharmacy sent down? It may take a call from your doctor to get the pharmacy to send down a different brand if the problem continues. They should have records. I keep that information so my doctor doesn't have to look it up... Saves time.

And we've gone slower than the package insert whenever my blood pressure was too low or high - usually a sign it wasn't sitting well that day. Though I never bothered to record that info. It's in their notes.

And an aside... Some IVIG brands have high sugar content. Just something to be aware of in case you are diabetic. That was never an issue for me.

If you type IVIG comparison in google, you should find the names of different brands on the market, which are high sugar, and whether they should use saline or dextrose to flush the line at the end of the infusion.

Do you get infusions at home or as out/in patient?

Good luck with the next round - don't give up trying to find the right fit.

Dorothy

#7 mollie

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Posted 01 January 2011 - 11:30 PM

Thank you all for your responses.

I am going to ask my nurse to slow down the infusion next time as my husband and I both thought it went faster than usual. Also, as the nurse comes to my house for the infusion, the supplies arrive 2 days before and I'm really going to watch the brands. This time around my blood pressure seemed to be lower than it has in the past, so will check on that as well.

I also have a call into the pharmacy that send my monthly supplies and will ask them if they have sent the same brand every time (that should narrow it a little). I'm also going to load up on the tylenol as you have suggested as I really don't want to go through last month's saga again. Will keep you posted.

Again, thank you for your responses and suggestions...I'm very grateful and appreciative. Mollie

#8 Dorothy

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Posted 02 January 2011 - 01:55 AM

One last thought - Mollie.

IVIG is wonderful when it works! But if it gets too hard to tolerate, there are other medications to try. There's always a Plan B.

Don't give up. Keep moving forward.

Dorothy.

#9 mollie

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Posted 17 January 2011 - 12:23 PM

Hi Everyone,

Well, the pharmacist stopped my infusion this month because of the headaches I had been experiencing since my last infusion. She called my rheumatologist and told him that I should have a lumbar puncture to determine if I have meningitis (a possible side effect from IVIG infusions). My rheumatologist does not believe that I have Meningitis (do not have the classic symptoms) and I of course do not want to have an invasive procedure. I have made an appointment with my neurologist for next Monday and I'm still in a wait pattern for my IVIG infusion and had to have steroid injections last week because of significant joint pain that I have not had since the IVIG infusions started. I do seem to have something going on in my neck again (C5 and C6) and had neck surgery in the past for a ruptured disk and my doctor believes that this could be causing the pain and discomfort in the base of my neck. I still believe that the plasma was given to me cold and faster than normal and that was the cause of my headaches this past month. I'm very frustrated that a pharmacist could stop my infusion if my doctor says it's okay to move forward...how does that happen? I will see my neurologist on Monday and see what he has to say. Somewhat discouraged.

Thank you for listening.

Mollie


#10 Cheryle

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Posted 19 January 2011 - 12:31 PM

Before I let the nurses attach the IVIG bag to the IV line, I always check the label on the bag to make sure it is the correct brand and amount.This saved me from a big, big mistake last week.

The nurse had read an old order in my record and ordered Rituxan rather than IVIG from the Pharmacy. I let them know I had already had my two infusions of Rituxan and this was supposed to be IVIG. They then found the new orders and ordered the IVIG. It was a very costly mistake to them to have the Rituxan mixed and wasted, but who knows what that would have done to me medically.
The nurse blamed the nurse from last time because the old order wasn't pulled from my chart, but to me, she was just as guilty because she didn't read the dates on the order. This was Wednesday and I know she was overworked, had been there since Sunday with the ice storm here in Atlanta, but something's are too important. DO NOT let anyone inject you or give you medication without knowing what it is.

#11 debonair susie

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Posted 22 January 2011 - 07:20 PM

Hi Cheryle,

SO glad that you make this a habit and is very worth noting for all who have infusions, such as yourself!

Thank you so much for posting this experience of yours and I'm so happy you are conscientious!
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#12 mollie

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Posted 25 January 2011 - 07:50 AM

Hi Everyone...saw my neurologist yesterday and he felt that I do not have aseptic meningitis from the IVIG infusions although there are no guarantees. Since I have no symptoms at this time, if he were to do a lumbar puncture, nothing would probably show up. We decided (or actually I have under his care) that the risk is worth the benefits that I feel with the infusion. I'm going to have one more infusion to see if I react the way I did in December (although there were a couple of things different with my infusion last month such as faster flow, colder product) and if so will not continue with the infusions. They are going to treat me like an MS patient as MS patients seem to have a sensitivity to the product. I will be having a 30 minute IV hydration prior to my infusion and then I will be infused at a slower pace to try to eliminate the headaches. I did confirm that there has not been a change in the product, however, changing the product would be an option as well. My rheumatologist found something going on in my neck between my C5 and C6 area and gave me steroid shots when seems to have relieved the headaches. Scheduling the infusion sometime over the next two weeks and will keep you posted. Thank you for listening and your advice. Mollie

#13 Shelley Ensz

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Posted 25 January 2011 - 12:37 PM

Hi Mollie,

You have certainly put forth the effort to get things back on track with your IVIG infusions. I really hope it pays off in successful infusions in the future, with less side effects.

Thank you for setting a good example for all of us on using self-advocacy for treatments.

:thank-you:
Warm Hugs,

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