susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I received 20 grams yesterday and today have the worst headache.
I receive GammaGard Liquid 10%.
New nurse and increased dose from 15 to 20. I asked for it to be run very slowly. Only premeds Tylenol. I sleep during the infusion -so am not monitoring the rate.
I am trying to figure out how many ml/hour I received. Generally how long do the pre and post saline flush drips run?
Infusion started about 1:00. The bottle was almost empty by about 3:30. So perhaps the rate was about 100 ml/hour as average? I don't know the max ml/minute rate.
Would it be ridiculous of me to ask for it to be run slower? ie top out at a max ml drip rate? Like what? TIA.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
My IVIG infusion rate is prescribed. The nurse is not allowed to adjust it. My pump is preprogramed and locked by the pharmacy (weird right?). When my doctor changes the dose, the pharmacy sends me a different pump with the new settings.
The infusion starts out slowly, first 15ml rate is 30ml/hr (30min). Next 30ml the rate increases to 60ml/hr. Next is 45ml at 90ml/hr. Next 260ml at 120ml/hr. Total dose 350ml.
I do 500 ml NS pre and post infusions to prevent migraines. I usually run them by gravity, wide open (as fast as possible!). It only takes about an hour if I'm sitting down.
You could ask your doctor about changing your premeds. Maybe benadryl or ibuprofen might help you more than the Tylenol? That is what I take. Some people need a small dose of steroids, not ideal but I'm just throwing the idea out there.
Make sure that you are drinking lots of water day before, during, and after the infusion. You need to be well hydrated to prevent the headaches. Keep your blood sugar up too.
You could also ask your nurse to run the next infusion more slowly. Tell them that you had a horrible migraine with this one. They should be willing to work with you and your doctor to figure out a way to give you your IVIG without side effects.
PS: I can't believe you are able to sleep during your infusions! I have mine at home and my nurse is constantly talking to me and checking vitals. There's no way I could get a nap in even though I've desperately wanted one so many times.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks so much Sammy. My head is splitting so cannot think/calculate clearly.
The total time for your 350 ml is how long?
My "box top" says 20 grams = 200 ml.
My past infusions the "beeping machine" was not used. Previous nurse said she had to "eyeball" it. Same thing yesterday. Ugh. Now I realize there has been no way to know exactly how fast my drips have been. With the previous nurse and lower dose and no headaches I was not concerned.
I get my infusions at an oncology office. Apparently there is a shortage of nurses that can mix/infuse chemo. Whatever nurse - permanent or interim always has her hands full - it is just the one nurse and sometimes a pharmacist to help her with several people being infused at once.
I am grateful that I can be treated there. But Sammy I think you have the better deal. A pre-programmed pump (?) and a private nurse?!
I am guessing that yesterday my rate went over 100 ml/hour. Perhaps I can ask not to go over 75? I cannot take Benadryl because of my dryness issues.
Sammy - know that I think of you often and hope you are doing better with your fractures and all. You are nightly in my prayers.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Susan,
First of all, if you still have a really bad migraine, and it continues long, check to see how your neck is: can you move it ok or not much? I'm asking, because it's possible to get aseptic meningitis from IVIG. And if it were to happen, it is most likely to happen when you start out in treatment. If you suspect it (horrific headache that persists and stiff neck, sometimes fever, etc.), then you should call your doctor and go to the ER.
If it's not as bad as that, definitely your infusion should be slower. Like 60 ML per hour. After the next time as that slow rate, you can try different rates. Ask your doctor to rx it that way, so the nurse has to give it to you that way.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
susank - my 19 yr.old son has been receiving IVIG for nine months now (every two months, 2 days each) and, thank God, he is slowly getting better!
Sorry, I don't know the infusion rate, but my son experienced bad headaches and heart palpitations the first couple of times until the infusion was tweaked and slowed down.The infusions start in the morning (about 8:30 a.m. and last until 3-4 p.m.) for two days.
Migraine headaches are one of the side-effects from this treatment. He takes 400mg of Ibuprofen and 50mg of Benadryl before the infusion starts (it is done in the IV clinic which is next to his doctor's office).
Then the nurses give him these meds every six hours while he is in the clinic. I give him the Ibuprofen and Benadryl (six hours from the last dose) when we get back to the hotel if he hasn't fallen asleep.The Immunologist also prescribed Floricef (generic? Butalb) as needed for the migraines (2 tabs every 6 hours with a maximum of 6 tablets daily) if they are really bad.
I would definitely tell your doctor and the nurses about your situation and ask them to slow down your infusions.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
posted
I get 40 grams mixed into 800 ml's of liquid. I used to get it at 75 ml's per hour and it took about 8 hours. Now I can escalate up to 250 per hour. I've been getting it for several years and am now getting it 3x/mo. I do best when a saline drip is running at a pretty fast rate.
Pre-meds are Tylenol and Benadryl. My BP usually goes up for the next few days afterwards and I have a hard time controlling it.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I get premeds of Tylenol and Benadryl and take them post as well and up to a day after the infusion. I recently slowed down the infusion rate to 60 ml. You have to ask them to slow it down. I have gotten more sensitive, and still feel flu like for a few days but it is not so bad. The bad headaches are not coming every time now, and if they do they are shorter lived. I've had aseptic meningitis from it so many times...when you can't move your head and you are in excruciating pain, fever, neck hurts, even spine, you have meningitis.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic