For ANY and ALL getting IVIG

[anita]

HI all,

I have an wonderful experience to share that may help others receiving IVIG. 

Just a little background.  I began receiving IVIG in 1997 for CVID continuously for 9 years, until 2006.  Then  brief stop due to insurance appeal.  When  I restarted in 2007 (with high dosing for neuropathy) I had a horrific reaction of aseptic meningitis that put me in the hospital for a week and another 30 days at home before I could walk around normally.  I did not receive IVIG again until almost a year ago.

The point is about my pre-meds (which we ALL take in some form).  At first (1997-2006) I took Tylenol, Benadryl and IV steroids (40mg Solu-medrol).  In 2007, it was the same.  This latest dosing (June 2013) was Tylenol, Benadryl, and 5 mg IV dexamethasone.  Due to some reactions (swelling/redness/itching of the lips, and horrible laryngeal/pharyngeal pain deep in the throat, headaches, weakness, etc. We did a couple months trial of 10 mg Dexamethasone.  There was no change, so we dropped it back down to 5 mg last month.

I had spoken with the doctor and nurse about dropping the dexamethasone, and they both felt this was appropriate, but also encouraged me to try Zyrtec even though I already use Benadryl.  Both are antihistamine, but Zyrtec works longer and does NOT have to extreme sedation or drying effect of Benadryl.  So I gave it a try.

My infusion was on Friday (yesterday).  I am now into day 2 which is when my normal reactions begin.  I am reporting with much enthusiasm that not only was my infusion itself PERFECT (I usually don't have much of a problem, but I couldn't even tell when rates increased, etc---which I normally can), BUT my post infusion has been as close to perfect as I would have ever imagined.  I had a very minor headache for a while, but NO swelling/burning/red lips, NO throat pain so far, and although a little weak, it is SO much better then before.

I attribute this ALL to the Zyrtec as it's the only change.  I have never heard anyone here (or anywhere else) say they use this for a pre-med.  I'm telling you, it's worth a try.  It's OTC, lasts 24 hours, no sedation effect, no extreme dryness (Benadryl can cause permanent damage to the salivary glands) and I feel better then I have ever felt after an IVIG infusion.

The doctor and nurse told me to take one Zrytec the day before infusion, day of, and for 2-3 days after (which I will do, of course).

So far I am more then pleased and ENCOURAGE all of you getting IVIG to give it a try.  Talk to your doctors, as this truly is worth it.  It works better, longer without all the side-effects.

Even if just ONE of you try this and have less reactions or a better infusion experience, this thread was worth it.  After hearing what most of your experience each infusion, you all would benefit.

Anita

[Carolina]

Thanks Anita,

I will try Zyrtec next time.  I took two Benadryl on Tuesday before the infusion which started around 9:30 and I was done by 12.  But was wiped out all afternoon from the Benadryl.

Out to get Zyrtec for next time.

Thanks!  Elaine

[anita]

I am so impressed, Elaine, that I will take the Zrytec again next month and if I have the same result, I may try to reduce the steroids (as they may not be needed, as I see it).  Less steroids is ALWAYS a good thing.  I just broke my foot (stress fracture)...from simply walking across the yard to the garden.  Certainly thanks to long term steroids use and osteoporosis.  If I can do this without steroids, that would be great for me.  I know you get some added benefit (in feeling better) from your low dose...which I honestly don't think would hurt you in the long run.

[littleone]

This is so helpful! Thank you.

I'm slated for my first infusion not this wk but the next.  My dr ordered no steroids bc she said
a)the less the better (I too have major feet issues post long term pred)
b) it's will give us a better data point re the success of IVIG - if it works we will know its that vs the steroid.

So to reiterate u have canned the Benadryl all together and are only doing the Zyrtec?

Thank u so much!!! Feel well 

[anita]

This time they just added the Zyrtec, and reduced dose of Benadryl (25mg).  Next time a want to eliminate the Benadryl and just do Zyrtec.  If I still have great results, then I want to reduce steroids even further or eliminate it completely the following infusion.  So this could take a few fusions to work out.  But I'm soooo excited already, that a few months to iron out details is nothing.

I have Cushings from 18 years of steroid use (in one form or another), so ANY reduction in steroids is best.

I hope others that try this (you & Elaine so far), come back and report whether it was helpful.  I have no idea why this is not more widely used.  Maybe Irish will pipe in and give us her view on this.

[littleone]

I will most certainly keep u posted.

So far neuro ordered 50mg Benadryl and not sure how myuhc Tylenol. Ill tell her ab the Zyrtec.  I'm feeling so insanely sick/non functioning that I just want to get this party started and see if it works. 
There was a delay (long story) even thou I was approved over a month ago.

Ill let u know!
Littleone

[anita]

Andrea,

I asked my GP last Friday if we could discuss Cushing's, and he said, "what's to discuss, of course you have Cushing's"...LOL  He noted ALL my symptoms.  He said I will likely always require 'some' steroids at this point, but the goal is to reduce as much as possible.  So he is on board with me tapering my Flornef/fludrocortisone and hopefully stopping it all together.  If the Zyrtec continues to work this well, I will also be trying to stop the IV dexamethasone before my IVIG.  We've already cut it in half from 10-5mg.

[irish]

Good to hear that this works.  I don't suffer from the issues that you have, but my immunologist did order Xyzal for me after I had the severe allergic reaction to the GAmmagard. I occasionally will start to itch on my back and arms and if it doesn't cease within 10 minutes or so I know that I could get in trouble. I take this drug and it works great. Second cousin to Benedryl and doesn't cause sedation or increase the dryness that I can tell.

This drug needs a prescription and is more expensive, but I just mentioned it here in case others need an alternative to the Zyrtec. Irish

[anita]

Hi all,

I'm sorry the topic slid off the track for a bit.  Back to the point of the thread:  I am STILL enjoying a much better experience on day 3 post IVIG.  I have some minor throat pain/swelling (laryngeal & pharyngeal), but I must report at least 50% less discomfort, so still a very positive experience overall.

I did a little research into why this Zyrtec might be the golden pill here...after all it is just another Histamine 1 receptor antagonist...same as Benadryl.  Zyrtec is second generation, but still works in basically the same way, but with no sedation effect and less drying effect.

But what if it's just a matter of tolerance.  Most of us have been using Benadryl for years...because it had become protocol.  Antibiotics must be changed due to infections becoming immune to some antibiotics, so why can't antihistamines lose their effect on allergies over time...especially if Benadryl had been used on them over and over again.

I honestly don't know WHY the Zyrtec worked so well for me, but MAYBE it was as simple as that it had never been used before.

Any thoughts on this?  I'm not even sure if I'm articulating my thoughts correctly.  If you get what I'm trying to say, then please pass along your thoughts as well.

Penny for your thoughts???  LOL

[SjoDry]

Thanks Anita.

My next infusion is on Friday, so I will try it with Zyrtec.

SjoDry

[Ripvanann]

The off track was my fault,  sorry!

My allergist told me that antihistamines do in fact lose their effectiveness over time and perhaps this is what it is. I'm certain that the chemical compound used in Zyrtech is also much different than Benadryl because Zyrtec was the # 1 allergy med for quite some time. However,  Benadryl is still #1 for severe reacions to things we can avoid in the future.

Whatever it is in Benadryl must work quickly and effectively on fast, rather severe, short term allergic reactions  much better than a long acting Zyrtec. When we use benadryl it's because we have hives, swelling etc. from something that can  hopefully be avoided in the future.  Zyrtec seems to work better on stable and consistent, systemic allergens that we can't avoid and are not as tough on the system.  Perhaps since the IVIG is in our bodies for 3-4 wks, this is why? It's almost giving us a systemic "permanent" allergy that we can't avoid, just like seasonal allergies, mold etc. Am I making sense?

[anita]

Brief update:

Unfortunately, the throat reaction I get continued to progress a little more.  The reaction is called laryngopharyngeal pain and causes inflammation (swelling and irritation) of the Larynx and pharynx area of the throat.  It is quite uncomfortable with EVERY swallow.

The reaction has always started at the end of the second day after the IVIG (as this is when the IV steroids begin to wear off).   I did notice a little less discomfort this time, but as each day goes by, the discomfort is getting right back to the level of previous infusions.  

Therefore, I must conclude that this particular reaction is solely inflammatory since it related directly to the steroids and begins when they end.  All the 'allergic' type reactions seem to be greatly improved or completely gone with the Zyrtec. 

I am still VERY PLEASED (thrilled actually) with the Zyrtec and will use it next infusion as well to confirm this is the reason for improvement in allergic reactions.

I hope anyone else trying it has as good of a response as I did.