IVIG HELP

[Kyranbigeyes]

I have low IGG so I have IVIG every other month. I have to take it with a 25 drip or I get bad side effects It takes 8 hours for the infusion I’m given Tylenol and Benadryl before the infusion

It takes me about 6 days to recover from the infusion I experience fevers, headaches, and my eyes are sensitive to light Does anyone have any suggestions or tips on how I can avoid these side effects? I read about sub contaneous (spelling) Infusions I’m wondering if I should try this I’m taking a good brand so I don’t think that’s the problem I have tried another brand and had the same results Any suggestions would be appreciated

[Meic13]

hi, I had IVIG regularly last year and over time the infusion sped up to just 4hrs. I found going home to sleep immediately and then plenty of fluids the next day really did help, its all about looking after yourself. TLC

[MsChief]

Hello - are you in the U.S.? I have been on Monthly IVIG infusions for at least 2 years. The hospital changes the brand when their contracts change in order to get the lowest price. Sometimes it is in a bottle, sometimes it is delivered in a bag. I have done well from a symptom perspective - feel jittery (hard to describe) for a day or two after infusion - never get a good night’s sleep - did a sleep seminar online from Dana Farber - 30 day Step Program presented by Christopher Recklitis, PhD, MPH. Very helpful. They follow up with people and make individual recommendations after 30 days. I am also trying - rather unsuccessfully - to get better into meditation and reduce ANTS in my life. Has your oncologist discussed the brand of IVIG you are given - whether it would make a difference? What about changing the pre-infusion medications? I too am given 2 Tylenol 500mg and one Benedryl about 20 minutes to 1/2 hour prior. Stay in touch with this great site. All best to you going forward.😇

[Kyranbigeyes in reply to MsChief]

Yes I’m from the USA. Thanks for your reply. I go to Stanford and I get Gammagard. It’s supposed to be one of the best brands. Yes I have discussed all of this with my doctor. He did mention once giving me a steroid before the infusion but changed his mind because it weakens the immune system.

[AussieNeil Partner Administrator in reply to Kyranbigeyes]

I think it's more about whether or not a brand agrees with you, rather than how 'good' a brand is. Some find that switching brands resolves problems they have. Some can find the premeds are the cause of their side effects. Premeds aren't given in Australia unless needed and I never had them in the year I was on IVIG before switching to subcutaneous IgG, which I've posted about here:

healthunlocked.com/cllsuppo...

Neil

[lankisterguy Volunteer]

Hi Kyranbigeyes,

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There have been several discussions here about Subcutaneous IVIG- you can follow this link to read them

healthunlocked.com/cllsuppo...

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Several people like AussieNeil seem to prefer the weekly sub q method vs. monthly infusions, but in the USA and especially with Medicare there may be complications with insurance payments.

(Medicare pays through Part B for drugs administered by a medical professional but uses Part D for drugs self administered).

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Len

[Kyranbigeyes in reply to lankisterguy]

Thanks Len. I appreciate the information.

[Middlebay in reply to lankisterguy]

Hi Len and Kyranbigeyes,

I am on weekly SQ Gammagaurd Liquid and have no side effects .My premeds are Tylenol and drinking lots of water. I have Medicare, and Part B and my supplement Harvard Pilgrim, pick up the entire tab. It was explained to me that Part B pays because it is administered through a pump which is covered under B. I did have to go to an immunologist who diagnosed me with CVID so I became eligible for the at home SQ treatment. Many CLLers also have CVID and that was diagnosed by blood work and vaccine challenges. I use Acreedo Pharmacy and they are wonderful with support and delivery. A nurse comes to your home to show you the procedure the first time, but it is very easy. I find that taking the infusions in my thighs is much more comfortable I infuse 6 grams and it take about 2 hours. I watch a movie. So much nicer than going to the infusion center especially during Covid. Best of luck!

[lankisterguy Volunteer in reply to Middlebay]

Thanks for following up with those details- so glad you can get it with no copay, the fine print that qualifies under Part B is quite interesting.

Len

[SERVrider]

I have been on replacement IgG for two and a half years now by sub-cutaneous infusion. I am on pretty much the maximum dose of 100ml /20g of 20% solution. This involves a 4 needle infusion set and an electric syringe driver. With a weekly administration, it takes about an hour and a half at a rate of 70ml/hr. Once trained, I self-administer. Our hospital insists on a yearly check administration so I go to the hospital and do an infusion under supervision to get my "licence" renewed for another year. The deliveries come every three months. I have had Cuvitru (Shire Pharmaceuticals/Takeda) and latterly Hizentra (CSL Behring) and both result in no adverse effects. The great advantage is that with weekly infusions the IgG level remains fairly constant rather than peaks and troughs common with monthly IV infusions and I only have to go to the hospital annually.

[Kyranbigeyes in reply to SERVrider]

That’s wonderful. I’m hoping I’ll be able to make that switch to sub cantoneous

[Splashes]

I have ivig every 6 weeks for the past 4 years. My experience is fabulous. Usually, feel slightly sluggish and low at end of 6 weeks. Feel fabulous the day after infusion. Full of energy! I sleep the whole day of infusion. Call it my day at the cancer spa because I leave hospital feeling relaxed, refreshed, and rejuvenated.

[Kyranbigeyes in reply to Splashes]

I’m happy for you. I wish I had the same experience.

[Splashes in reply to Kyranbigeyes]

I wish you did too. Sad for you. I commented so some may be encouraged that not everyone has side effects from IVIG. My prayers for us all to be healed and pain free!

[Kyranbigeyes in reply to Splashes]

Thank you. I’m happy for you and wish you all the best.

[MsLockYourPosts Passed Volunteer]

Switching brands usually solves reaction problems, though you may have to do it more than once. Which brands have you tried? Privigen is said to have fewer reactions, though I have none with Gammunex C. I know some people whose premeds include a steroid. One thing to ask about. AussieNeil could comment on the sub cutaneous option.

Edit - your post showed up without comments until after I posted????? Don’t know what that is about. Gammagard was one of the rotation of brands I received my first several years of IVIG. It is the one I later reacted to and no longer get. A few years ago I found that infusions were making me spacy. Turned out that it was the Benedryl (tablet), not the IVIG. I now take Claritin and Tylenol.

[Kyranbigeyes in reply to MsLockYourPosts]

Thanks for the information. I have tried Provigen. I was given that in the hospital when Stanford ran out of Gammagard. I had the same reaction. I may ask my doctor for a steroid for a pre med.

[MsLockYourPosts Passed Volunteer in reply to Kyranbigeyes]

Also, are you getting IV Benedryl or tablets. Some friends need IV Benedryl because if reactions.

[Kyranbigeyes in reply to MsLockYourPosts]

I’m getting a tablet of Benadryl and 2 Tylenol’s plus a tablet of Ativan.