Author Topic: IVIG and Sjogren's??  (Read 18779 times)

bark

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Re: IVIG and Sjogren's??
« Reply #45 on: November 15, 2010, 05:51:17 PM »
After having Sjogren's diagnosed for 6 yrs, I developed hypogammaglobuilinemia and low IgG- thus CVID.  I started on the IVIG- gammaguard  in march 2010 and had worse reactions with each infusion: fevers, headaches, then also developed higher fevers and nausea with infusions, and red streaks on my arm for days.  I stopped the monthly IV infusions and switched to weekly subQ infusions, I am now taking hizentra.  It works great.  I was really afraid of it at first.  A visiting nurse teaches you and you eventually do it on your own.  I have not had any abnormal reactions with the sub Q.  Some do not even premedicate with benedryl, I do premedicate with 25mg orally, but it is nothing like the dryness I had with IV benedryl premedicating with the IVIgG.  Hope this helps.

Linda196

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Re: IVIG and Sjogren's??
« Reply #46 on: November 16, 2010, 03:54:17 AM »
Hello Bark, welcome to Sjogren's World. Thanks for sharing your experience with SubQ IG. It seems we had a question about it a while ago, maybe if you use the search feature at the upper left, you can find the thread and the members who were curious about it.

Please feel free to browse the topics, and when you are comfortable with us, maybe you can start a topic about yourself as an introduction.
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gurs

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Re: IVIG and Sjogren's??
« Reply #47 on: November 16, 2010, 04:07:17 AM »
Bark,

Glad you wrote in. I had a few gammagard IVIG infusions, and like you, had worse reactions everytime I got them. Did you have the powder or Liquid?
I was supposed to have one last weekend because my doc said that the powder would be better for me, but I chickend out and Im glad I did.
Going to research this more...

gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

inga

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Re: IVIG and Sjogren's??
« Reply #48 on: November 16, 2010, 05:27:46 AM »
I think the IVIG solution must be a personal fit.  I use Gammagard 10% and do fine....maybe ask to try other kinds.   I would not mind trying the 'new' one that is out.

Streaks on your arms is pretty odd.....makes me wonder if they caused an infection when doing the IV.

I had one fairly mild 'allergic' reaction, which was kind of scarey.  I had a few headaches which landed me in the ER (full blown migraine like things.)  Other than that, so far so good....

It is not an easy decision.

I did not have any miraculous type cure.  I can feel areas that at one time were far more numb, but the response to IVIG can take a long, long time and be less than impressive in neuropathy.  In MG, it is usually very quick, but in PN it takes a long time from what I read.

Sometimes progress is not getting worse.

irish

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Re: IVIG and Sjogren's??
« Reply #49 on: November 16, 2010, 01:38:35 PM »
I just wanted to mention something that I learned in the past couple of months. One day I didn't take my zoloft in the morning prior to my IVIG and IV benedryl. I did not fall asleep that day. Makes me wonder if some of you with the bad dryness issues are on a med that might be a bad mix with the benedryl. Might need to do a lot of research to figure that one out. I just lucked onto this and know not to take it anymore. IRish