Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I will finally get my first IVIG infusion Wednesday!
I spoke with the nurse at the infusion center where I will get it, and he said they do not give saline. He said the doctor did not order it. I am going to call the doctor's office Monday, because we did discuss doing saline also (thanks to those who suggested it).
I am a bit nervous about the risks for IgA deficicient people, but I know others here have this deficiency and have had no problems. I am also a little nervous about how bad the side effects will be for me. I guess I will know soon enough!
Thanks to everyone who has helped me to get to this point. The information you have provided has been very helpful.
Posts: 4681 | Registered: Oct 2000
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I looked into IVIG for DD. There are brands that are better for those who have low IgA (sorry that I can't recall the details). Are you aware of this?
If the doc discussed saline with you and the nurse at the infusion center told you they didn't give saline, that's a problem, which you obviously are aware of. I hope you get some answers on Monday.
Did the nurse tell what they use instead of saline? Ringers? Dextrose? I didn't get why the immunologist we consulted with used dextrose instead of normal saline.
Good luck with the IVIG!
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
beaches, thank you for your reply and well-wishes.
My local immunologist knows about the low IgA, and we discussed it. So hopefully he prescribed the best brand for this. I thought he said GammaGard which others here said they use, but I cannot find it in my notes.
It sounds to me like the center does not infuse anything other than the IVIG, but I am not sure. I am so new to this, I don't really understand it all yet.
In another post someone said using a sugar solution can help with side effects. Maybe that is dextrose?
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hydrate, hydrate, hydrate 2 days before and after... Benadryl and ibuprofen right after to help stave off headache
(my daughter has had 2 IVIG's)
PV's---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Thanks surprise. How is your daughter doing with her infusions?
Do you know what I could take instead of Benadryl? It makes me very jittery. When is the best time to take the premeds?
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
;-). Sorry, PV's--are Positive Thoughts.
My daughter had 2 high dose IVIG's for PANDAS, not immune deficientcies. Higher dose believed to modulate the immune system, re-set antibodies, decrease inflammation.
They were each done over 2 days. She was given saline, but we were still advised to REALLY push liquids before and after.
We did not know about Lyme and co., they also included a low dose steroid with the IVIG's.
Benadryl was not calming for her either, we found out, but for some, it is.
The side affects afterwards (not sure if for you, your dose) was bad headache, perhaps vomit.
We gave ibuprofen afterwards.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Yay Sammi! I'm happy you're finally going to start your IVIG treatments. This is going to help.
Now your immune system will have a fighting chance, you may actually beat these infections!!!
Most people don't require IV hydration with IVIG. So the nurse you talked to may not have to give it often. If you are prone to migraines it will definitely help prevent that side effect. It's worth asking your doctor about.
No matter how much water I drank in the days before and during my infusions, it did not help. The IV hydration with NS helps.
Some people may use dextrose instead of normal saline IVs because certain brands of IVIG are incompatible with NS. Your pharmacist will alert your infusion nurses if you are ever prescribed anything incompatible. Your nurses will also be aware of this. They will be familiar with all types of IVIG given in the clinic.
You may want to talk with your doctor about the recommended premeds. Most physicians seem to prefer Benadryl + Tylenol or Advil. Some docs recommend low dose steroids instead.
I take my premeds (Benadryl + Advil) about 20-30min before the infusion starts. You are also supposed to repeat them afterwards but I usually forget since the pharmacy does not send that extra dose any longer.
Most of the time I have no side effects from the IVIG. I get Gammagard brand every 2wks, immune deficiency low dose, not the high dose for neuropathy (all though I have neuropathy and I would probably benefit from high dose).
Also, I have the super low IgA. My levels run in the single digits, far from normal range. If I do get a side effect it will be a headache/migraine the next day and general fluey feeling, that rarely happens now. Often, I just feel tired afterwards and that's it.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
surprise, thanks for the "PVs!"
For some reason, I was not able to get on the board and reply before.
I am sorry about your daughter's side effects. I hope the IVIG helped her. I am concerned about getting a bad headache because I get them a lot anyway. I called the pharmacist, and he suggested I try Zyrtec instead of Benadryl.
Thanks for your reply.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Thanks sammy! I really appreciate your positive comments.
I did call the immunologist's office and the doctor said to try it without fluids. I believe he said it could make things complicated. That makes no sense to me because the NY immunologist was going to give saline. I guess I will just go with the flow and see what happens.
I cannot take Benadryl, so I think I will try Zyrtec. As all Lymies know, we have enough "regular" symptoms, we don't need others added to the list. I will take Advil and Zyrtec thirty minutes before as you suggest.
So do you drink water during the infusion also? I am so glad you rarely get side effects other than being tired.
Now I can't wait for it to be over with so I know what to expect!
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This may be too late, but maybe not... I haven't been able to access medical for a couple days, sorry.
Hopefully you won't need the extra saline IV's. Most people don't. It would make your infusion take a couple hours longer. If you don't need it, I'm sure you'd rather go home and sleep after the IVIG is finished.
I do drink lots of fluids during my infusion. It makes me extra thirsty and the extra hydration helps prevent the migraines. So do bring some drinks you like from home.
Also bring some snacks and maybe plan to have a friend or family member bring you some food if you are going to be there during a meal time.
IVIG infusions can be long and boring so bring some reading and entertainment stuff. If you're lucky and your nurse leaves you alone long enough you can take a nap for awhile.
I've been told that Zyrtec is the best alternative to Benadryl. Good idea to take that if you tolerate it well.
Take care friend, I'll be thinking of you and praying for you today Posts: 5237 | From here | Registered: Nov 2007
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