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Old 08-22-2010, 01:45 PM   #1
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New - IVIG - Reaction - Mucous Membranes very dry?

First post. Very sick. Have suffered severe dry eyes/mouth etc four years.
Recent Dx of hypogammaglobulinemia - CVID. Had first IVIG infusion 2 weeks ago which went well with no premeds. Day after infusion had reaction when blowing my nose with toilet paper. Felt like I had toxic reaction. Days following noticed much increased dryness of eyes, mouth, nose etc. Unbearably so and now I am so scared. Doctor's office says no relation the IVIG and much worsening dryness. Has this happened to anyone else? If, yes, did this reaction resolve? Any explanation why this happened? Ramped up my immune system for further attack? IGA reaction?

My Sjogren's and associated tests neg. I can cry emotional tears but seem to have very little oil from glands. Very sensitive to light/glare.
Lyme and Bartonella tests indicate probable infection.

My labs before infusion:
IGG
Total 576 (700-1600)
Sub 1 349 (422-1292)
Sub 3 26 (41-129)

IGA
Total 91 (70-400)
Sub 1 49.6 (58.2-263.5)

I was told that since I am low in IGA I was supposed to receive low IGA IVIG ie Gammagard SD. Instead I was given Carimune which past days research seem to indicate Carimune is very high in IGA. Could this account for my reactions? Doctor has stopped orders for further IVIG. I am devastated about this. I know the IVIG did something to make my dryness 50 pct worse. I had not expected to be hit in the areas where I already suffer.
Had hoped IVIG would act as expected as immune moderator. (?).
Please, any help appreciated.

 
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Old 08-23-2010, 06:04 AM   #2
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Please be sure to hydrate well before and especially after. I used to keep Gatorade on hand as well as drink smart water. I've had reactions but none like you have described. Good luck! Oh and I switched to Privigen for a month (low or no IgA) and now on Gamunex. I have ZERO reactions on Gamunex. He can test your IgA sensitivity or something (sorry can't remember the name of it) by a simple blood test. Also make sure you do the premeds as well as do NOT let them go too fast on the IV. My max is 100 ml/hr ((hugs))

 
Old 08-23-2010, 03:31 PM   #3
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Tks. I got Carimune NF. Unable to verify the IGA content. It is either very low (trace?) or very high. Don't know if that would play into my increase in dryness. It has been 2 weeks since infusion and still bad.
There has got to be an explanation for this but I cannot get answers.
I am beyond miserable and so scared this result will remain.

 
Old 08-23-2010, 04:06 PM   #4
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Carimune has a high IgA content. That doesn't necessarily mean you will have a bad reaction because of it. My IgA levels are <25 and I was on Carimune. I just didn't like the side effects period. Now, I personally don't think this is a reaction to your IVIG. Typically (and you shoud read all of the other posts on here about IVIG), reactions resolve in a few days, even the most severe reactions. Now what COULD be happening is your body is trying to "fight" whatever it is that is causing the dryness, therefore making it worse.

I had IVIG explained like this: the second it is introduced to our system it starts fighting all of the yuckies that haven't even made us sick yet. Which is why we get so tired and sick after them. Well thats one way I've had it explained anyways lol. Good luck! Sorry, I don't know that I was much help ~>:-/

 
Old 09-25-2010, 06:32 PM   #5
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

I had same issues, I tested positive for sjorgrens one year ago, You prbably are developing autoimmune issues. This is common with cvid as it progresses but most md's won't tell you this.

 
Old 09-26-2010, 01:24 PM   #6
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Buck - you had IVIG with no premeds (ie drying Benadryl) and felt that after the infusion your eyes/mouth were more dry than before the infusion?

 
Old 09-27-2010, 11:51 AM   #7
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Yes, I am on vivaglobin now. I had horrible side effects like you on the ivig. I still have side effects on vivaglobin but not as bad. If you are over 40 you may also have a problem with tear production that is age related. You lose the ability to produce the oily component of your tears. Have you seen a rheumatologist?

 
Old 09-28-2010, 04:15 PM   #8
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Buck, you felt more dry after IVIG? Dryness not from anything else/other drugs associated with IVIG? Did dryness issues resolve to pre-IVIG levels?
My doctor and others I have consulted say not possible for IVIG to cause more/dryness. (but premeds that are normally taken do cause dryness).
Did you not premed (like me) due to drying effects of Benadryl for example?
Doctor and all have explained that IVIG is immune modulator - ie calming down where needed and boosted where needed. Should not cause Sjogren's to be worse. For sure I have CVID - am very dry - but Sjogren's neg. CVID in and of itself does not cause dryness, right. Dryness is from something else - but what - if not Sjogren's? Three rheumies say I don't have Sjogren's.

 
Old 09-29-2010, 04:36 PM   #9
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Hizentra is the new IGIV sq that will be replacing Viva......Gamunex is always a great choice. It is the only IGIV that St Jude's in Memphis uses.

Sometimes the IGIV is not infused properly, premeds are not done properly, also your body may react to what is added to an IGIV like Sucrose, Maltose and so on. You have to find one that agrees with you.

You can get an IVIG comparsion chart online somewhere. Just make sure it is up to date. Octagam has been recalled so it is completely off the market. Do not get too used to Carimune as Privigen liquid is replacing it.

Any chart should have Gamunex, Carimune, Privigen, Gammagard liquid and Gammagard powder, Flebogamma 5%, Octagam OFF THE MARKET as of this week, Hizentra and Vivo, also a new one called Gamaplex on it. Too soon to have an up to date chart that has Octagam off and Gammaplex on it.

Remember Gammagard powder has a low Ig but needs to mixed and infused properly.... Read up on all the IGIV's.... Be your own advocate.

Good luck. Oleander

 
Old 09-29-2010, 05:52 PM   #10
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

My dryness was there pre ivig. I use hydroxyzine as a premed, along with zofran and hydrocodone, I have severe joint and back pain from ivig. Let me correct, my pain is increased during infusions. I want to tell you that you can have an autoimmune disease like sjogrens and not test positive. I have seen experts at Mayo Clinic, Vanderbilt ans Barnes-Washington university. With CVID or other Primary Immune disorders you cannot rely on blood tests for diagnosis. You could always talk to your doc about trying sjorgrens meds to treat the symptoms. Really, there is no cure, it is just symptom management. I spent 4 years looking for a cure because I could not accept that symptom management was my only option. Now I have less anxiety since I have accepted that my body has changed.
I wish you well. Hope this helped.

 
Old 09-29-2010, 06:34 PM   #11
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Tks replies. Does Gamunex come in liquid?

Buck - I am sounding like a broken record. Forgive me for asking - you felt more dry after IVIG? "Blamed" the extra dryness on the IVIG?

IVIG is supposed to be immune system modulator. Why is it not written that IVIG could help against Sjogren's ie dryness etc? One would think IVIG would calm down the attacking of the glands, but I have not read that anywhere. Reasons one way or another. Praying it could not possibly make things worse. Did it with me and maybe you? I make antibodies to various things tested for. ie Lyme, EBV, HHV6, etc. But nothing in four years in regards to Sjogren's. AB tests neg., RF and ANA neg. Will repeat (?) that I read where Sjogren's patients usually have high immunoglobulins and low WBC count - and I am the opposite there. I am trying to set up another IVIG infusion because I feel sure CVID is large part of my fatigue, pain etc problems. Where the dryness comes from I don't know and I don't want that to worsen. So very concerned.

 
Old 09-29-2010, 07:11 PM   #12
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Your dryness could be from Sjorgen sp? or Lupus........

I am being worked up for Lupus as we speak. I am praying it is not..

You can have a negative ANA and have any AutoImmune disease.

Yes Gamunex is liquid.

I hear Plaquenil works well so I am looking into that.

I wish you the best.......Oleander

 
Old 09-29-2010, 10:32 PM   #13
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Must pop in and agree. I had horrible side effects from IVIG and due to recommendations on here, went thru 4, yes four different brands I ended with Gamunex no faster than 100 ml/hr. Too fast on your infusion can increase pain already there (much worse). Gamunex was awesome, zero side effects, only one where I was not bedridden with migraines. Privigen was very good as well. I have one of those charts. I think it was from the...oh shoot I don't want to get moderated. You can PM me and I can maybe find a link to give you where to get the brands. But try Gamunex and slow down your infusion Good luck.

 
Old 09-30-2010, 07:09 AM   #14
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Re: New - IVIG - Reaction - Mucous Membranes very dry?

Yes slow infusion and frankly Gamunex has an excellent history. Your provider looks at reimbursement and each one has a different rate.....Take a look at a chart if you can. Also a liquid is already mixed properly ( less room for error), has the nurse to slow the infusion way way down. Good luck......O

 
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