Author Topic: Finally getting IVIG-any advice?  (Read 310 times)

ktfabian

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Finally getting IVIG-any advice?
« on: July 15, 2018, 07:15:37 PM »
Hi all,

I know I don't post very often but I still lurk. Five or 6 years after our first request and appeal, my insurance recently approved IVIG after I didn't create any antibodies to the vaccines the doctor used to test my reaction. I'm IgM and IgG Subclass Deficient and have had so many infections over the past year and a half since my Sjogren's dr. stopped my Rituxan that I've lost count.

My first infusion is this Thursday. I've been doing some reading on it but wondered if anyone here had some first hand advice they could offer for preparing for my first infusion?

Thanks.
Tracy
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

mollie carey

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Re: Finally getting IVIG-any advice?
« Reply #1 on: July 15, 2018, 07:58:30 PM »
I received by IVIG for 12 years it helped me greatly but then I began having pretty severe flulike reactions. I would have meningitis type of headache and be down days so now I do subcutaneous gammaglobulin each week. When I received my IVIG they always told me to be sure I was well hydrated, and I always had to premed with benadryl and prednisone because of a serum sickness reaction I had happened after one IVIG treatment. I have CVID so I was deficient of IGG and I'd had chronic infections for years and on antibiotics 10 years. The IVIG helped a lot with my lupus and Sjogren's, I don't feel like the subcutaneous has the same effect as getting the infusion all at once. It is more immune modulating to get a large dose ~that is to say it suppresses your immune system, hence that is why they use it for lupus that is attacking the kidneys or other more severe issues.

If you have any kind of reaction they can always change brands because some brands affect people differently I use Gammunex now, and had reactions to other kinds. During the IVIG you are in a hospital setting so there're always nurses to handle an emergency, or any reaction, I do think most people have some sort of achy tired reaction/headache after but I'm sure there's some people who don't. I would call mine reaction like the flu type reaction that lasted 2 to 5 days which you hear most about when researching IVIG side effects.

IVIG immediately helped with my infections I was able to go off all antibiotics and then I would feel good until my next infusion and then I would run out about three just five days before and not feel well again. Good luck with your infusions I hope they bring you new energy and put at end to your infections.

irish

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Re: Finally getting IVIG-any advice?
« Reply #2 on: July 15, 2018, 11:30:33 PM »
I am in my 12th yr of IVIG. The most important thing to do is to make sure to drink plenty the day before. Do not flounder yourself but just a goodly amount. The IVIG products are "heavy" cause they contain a lot of antibodies and protein plus the amount of fluid you will get may vary....I always gain a couple of pounds and it takes a few days to get rid of the fluid. Have to remember to drink enough the next couple of days also. I am to take Tylenol for any flu like symptoms or headache I may have. I never have a bad headache but feel fluey and sometimes lousy and lay around a lot

My doc uses Tylenol, benedryl and hydrocortisone IV prior to starting the IVIG. I usually am there about 7 hours as I get 800 ml of Octagam over 6-61/2 hours. I am getting older so have slowed my infusion down some. I usually read magazines, books, play with my phone, read the paper, talk with staff or other patients and beforeo I know it I need a nap. I can sleep so good during my infusion and usually sleep 2-3 hours in the morning.

I bring a little lunch with me. They provide carb water and juice and some granola bars and patients will sometimes bring in donuts or rolls to go with the coffee that is provided. We have a water cooler, microwave also. We wear our street clothes and sit is nice electric recliners all around the very big comfy room. We can walk around and there is a big round table that people will play games or cards at. Very informal and cozy.

The immunologists office is just below us on the ground floor and they are up there in the blink of an eye if someone has any problems. In all the years I have been going there I have only seen about 3 people have any reaction. The nurses watch you close and if you have any itchiness or anything you wonder about be sure to tell them. The big treat is the blanket warmer they got a couple of years ago. It is just wonderful to fall asleep under one of those warm blankets.

I am all gun ho about the good naps during infusions. Think about it.....it is about the only time in ones life that you can lay around with nothing to do and no where to go cause you are captive for a certain number of hours and it really relieves stress. Good luck. It takes time to see changes. I had severely low t-cells and IgG levels and I had many infections the first years and slowly they decreased. My infusion is mainly for my myasthenia but also helps my immune deficiency and my skin disease called bullous pemphigoid. Irish

Carolina

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Re: Finally getting IVIG-any advice?
« Reply #3 on: July 16, 2018, 05:53:37 PM »
Hi Tracy,

I've been having IVIG every four weeks for 5 years.  I stopped having infections as soon as I started IVIG.  Before that I was sick all the time, in the winter months.

I suggest checking in the the Immune Deficiency Foundation, and their patient forum (like this for Sjogren's, but for Immune Deficiencies).

https://idffriends.org

There you will get lots of support.  I actually found most help when I was going through the process of testing and finding out I actually have an Immune Deficiency.  I SO MUCH DID NOT want to have to deal with yet another 'condition' and one that required treatment every four weeks, for the rest of my life, and the treatment isn't simple (now it seems simple) and it is so costly.

Now five years later it is just part of my life.  My insurance pays for everything (I'm lucky) and the last four infusions have been at my house!  A nurse comes every four weeks and I have the IVIG in the comfort of my own home.

Try the IDF, but many here have IVIG, and know all about it.

Hugs and Best Wishes,

Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

irish

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Re: Finally getting IVIG-any advice?
« Reply #4 on: July 16, 2018, 07:23:09 PM »
Heaves, Tracy, I posted that long post and just now checked it over and noticed that it was you. Heavens, you have been through so much and you will do fine. Sorry I did not recognize you.....keep on keeping on. Irish

ktfabian

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Re: Finally getting IVIG-any advice?
« Reply #5 on: August 02, 2018, 06:22:59 PM »
Sorry it's taken me so long to write back and thank you all for sharing your experiences and advice. My husband had a total knee replacement in June and had severe pain the night he came home. Turns out he had a hematoma between the stitches in his skin and the layer of stitches inside. He ended up going to rehab and came home right before my  IVIG.

We were in Philadelphia to see my Sjogren's specialist the day before my IVIG, so I probably didn't drink as much as I should have. I felt kind of lousy for several days after. They did give me tylenol, benedryl and steroids, and my doctor had them do a 45 min. flush with saline afterwards to help ward off the headache.

My next dose is Aug. 19 and our lives should be a bit more settled then and I can plan a little better. I go to our largest local hospital's cancer center and they have it nicely set up in pods do you don't really see any one else getting treatment unless you get up to walk around. They have small cafeteria area where you can help yourself to a snack of crackers, fresh fruit, sandwiches,drinks, and someone comes around occasionally and offers to get you something. I slept the whole time. I was probably my first real sleep since my husband came home.

One week after my first dose, I had another sinus infection. Oh well, at least it wasn't one of the stomach/intestine infections that had me down the first 5 month of this year.

Thanks again for all of your posts,
Tracy



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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

anita

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Re: Finally getting IVIG-any advice?
« Reply #6 on: August 06, 2018, 06:33:12 PM »
I started receiving IVIG back in 1996.  I get 700mg of Octagam every 28 days, as they are not just treating my CVID, but also neuropathy.  All the suggestions are great, hydration, pre-meds, etc.  I'm not surprised about your sinus infection.  Chances are it was already developing before you received your IVIG.  Sinus infections are very difficult to treat and they can start a long time before you see the symptoms.  I bet you have better results after your next infusion.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran