IVIg starts next week, feedback on dosing needed!
AnonymousMarch 16, 2011 at 2:34 pm
Get my first dosages next wed.
500mg of Privigen for 4 hours wed and then again 4 hours Thursday.
Same dose monthly after that but with it happening in one day per month for 8 hours verses two half days.
I know it is different for all of us but does this sound right?
My dr’s office does this in the office, they have a special room they do it in so I am hoping that translates to experienced and knowledgable.
Also they mentioned I would not be able to work either Wed or Thursday next week and may need Friday off b/c I may get flu like symptoms. What have those of you who have had IVIg treatments experience been with side effects? Do they usually get better with each treatment?
AnonymousMarch 16, 2011 at 4:06 pm
I receive Gamunex infusions, 60 grams every two weeks. I am not familiar with Privigen, so perhaps someone else here can address that specific brand of IVIG. I will tell you that when I started IVIG I received a “loading dose” over four straight days. By the morning of the last day I was pretty sick, feeling like I had a really bad flu. Unfortunately, I also developed aseptic meningitis, and really felt bad for a couple of weeks. Luckily, after that, I experienced nothing more than short-lived and fairly mild reactions to the Gamunex. I usually get a mild headache, a mild backache, and some fatigue. It all usually passes within 24 hours. Often I have no side effects to speak of. If there are side effects, they can often be reduced (or even eliminated) by slowing down the infusion rate.
Everyone is different when it comes to reactions to medications. You may have no reactions at all. Or you may progress like me, from a pretty severe initial reaction to very mild reactions at worst. The doctor is probably playing it safe by telling you to stay off work — just in case.
IVIG treatment at the beginning is very hit-or-miss. My neurologist has tried different dosages, rates of infusion, and frequencies of infusions, until we go onto a schedule that is optimal.
One thing you likely will have to deal with will be vein issues. IVIG can be very hard on the veins. I hydrate like crazy on days I am going to receive an infusion. Just prior to the infusion I run water as hot as I can tolerate over the vein area. The hydrating also helps with other side effects. I also hydrate while I am being infused. I also pre-medicate with Tylenol before my infusion to help keep side effects at bay, and will take Tylenol or ibuprofen afterwards, again, to help with any potential side-effects.
AnonymousMarch 16, 2011 at 7:07 pm
Nope, it doesn’t sound right.
But, double check with your doctor. Consider Goodney’s dose of 60g where g = grams.
Now compare that with what you put in your post- “500mg.” 500mg = .5g
As noted on this site on many occasions a so-called standard loading, or first time ‘bolus’ dose of IVIG is usually .4g/kg/day for 5 days.
Figure it out? Well 1 kilogram = 2.20462262 lbs. In nice round numbers, if you weighed 176, or so, pounds you would be 80 kg.
.4g times 80 = 32g. 32g per day for 5 days would be a total of 160g. Now that’s for the IVIG ONLY.
Some IVIG products such as Gammunex and Gammagard come in 10% solutions. As it turns out, so does Privigen. Therefore, the total volume of liquid is times ten.
The Privigen website is not a lot of help. Probably because IVIG is not FDA approved for Privigen to advertise as ‘on-label’ use. Privegen does however, recommend a starting infusion rate of .5mg/kg/min for both of their ‘on-label’ approvals.
Again, if you weigh 80 kg, then .5mg/kg*80kg = 40 mg. Even at this rate your dose of 500 mg would take only 13 minutes! I guess your dose is probably higher.
It is often recommended to pre-dose up to one hour before with Benadryl and Tylenol. Again, check with the doctor. And, as Goodney said, drinking lots of water the day before, during and the day after infusion are critical.
AnonymousMarch 16, 2011 at 10:55 pm
Benedryl and/or Tylenol? You save $$ by bringing your own, and the key is to take it IN FRONT of the nurse or infusion staffers. I’ve been on 3 Tylenol and 4 Benedryl at times, but am now just on two Benedryl…for with the rest of the day is a lost-leader getting a Benedryl hangover. [For want of a better description]
Flu-Like symptoms? Usually not bad for some… Loose bowels often in the middle of it all. Eat light, fruit salads and salads at home and take a small 10oz+/- bottle of Gatorade the day before to be sure you are hydrated.. Then avoid caffeine and drink water until you feel like a leaky boat. Afterwards? You, mite like me…get a really big appetite right after. After the nap, once I get home that is…
As for getting the IV line into you? Most IV nurses are very experienced and do it all the time! I had the direct line catheters for five years before I’d opted for a port catheter, as I was getting harder to ‘stick’ and I wasn’t too easy a one to begin with. I’ve had IVIG for 6 years and only have had one of those bad ‘aseptic meningitis’ episodes – I believe it was due to either a bad batch or bad mixing. Soo, finding an infusion rate that doesn’t give you headaches [plus the Tylenol and Benedryl] and balancing it all is key to how well you can work it into your life. Bring a snack for yourself to nibble on as well? IF they don’t have a TV? Bring a good book or I-pod and zone out…Most likely you’ll nap for parts of it.
One more thing? IF ANYTHING at all, feels weird or strange or good? Tell the nurse[s]! Last of all – and most IMPORTANT! Do not ever lie about your weight!!!!! Since your dosages are adjusted according to body weight? You could be shortchanging yourself in the long run if you skimp on your true heft.
It’ll be ‘interesting’ sort of at first? Then it likely will get boring and repetitive. Just be sure the nurse[es] check your vital signs often and consitently. Good news, and LUCK! And please let us know if you have more questions – if we can answer them? We will. And let us know how you feel afterwards! Hopefully after a couple of days? MUCH BETTER! That’s my hope.
AnonymousMarch 16, 2011 at 11:07 pm
I have only been receiving IVIG for a year, and like you, I was not an easy stick to begin with. My arm veins are terrible, and most of them blew within the first few months. We then moved to the veins in my hands, which were much better, and which held up very well until recently, when they began to scar. My IVIG nurse is excellent and a great stick. She says we can continue to move further up into my wrists and arms past the scarring, but I think at some point I am going to have to consider a port. I may need to seek your advice about the port option.
AnonymousMarch 16, 2011 at 11:17 pm
Hubby takes Privigen. He gets 100 G. every 3 weeks. He gets that over two days i.e. 50 G per day. He likes Privigen because it can be run through faster than other products. His 50 G. dose is run through in just under 3 hours. Hubby is usually tired for two days after, but drinking lots of water before, during, and after treatment seems to make a huge difference on whether you get headaches and muscle aches.
AnonymousMarch 17, 2011 at 8:41 am
Hmmm… My approval form says I am approved for 1404 units of IVIG Privigen 500mg for this year so I was assuming 500mg was per time I went but maybe it is more since it says 1404 units? Not sure but I will have to ask. I weigh 120 but they didn’t ask me this until after I was approved for the dosing. I am dissappointed that when I asked if I needed to do anything in preparation they said no and did not mention water or tylenol. I will definetly drink tons of water and ask if I should take anything medicine wise prior. Thank goodness for you all and your insight. I would not even know what questions to ask if not for you all and all your help!
AnonymousMarch 17, 2011 at 10:54 am
Jgl, They never mentioned water to my husband either. He learned that from other people getting IVIG in the day care at the hospital. In the beginning, he would take an Aleve and a Benydryl before going in to the hospital on the advice of other IVIG takers. He found as the months went by that the drinking of the water did the trick for him and he didn’t need to pre-medicate. On occasion he will ask the nurse to slow down the infusion if he starts to get a headache–that helps too.
AnonymousMarch 17, 2011 at 11:07 am
I had IVIG for years. After about 6 months getting a good stick was getting difficult and frustrating. I opted for the port line in the neck. The whole idea was kinda spooky but once it was in I had zero problems and the IVIG rate and infusion went much smoother.
AnonymousMarch 17, 2011 at 5:11 pm
I get Privigen 10% 25 grams every 10 days. Have been getting IVIG for the past 16 months. I was getting it every week for 6 months. When I was changed to every 2 weeks, I became weak and had to restart every 10 days again.
The rate is adjusted according to side effects. They start me out on 30 ml/hr for 1/2 half hour, then 60 ml/hr for 1/2 hour, then 90 and 100 ml/hr for the remainder of the infusion. I take my own Benadryl 25 mg and Tylenol 500 mg by mouth. I’ve stopped taking Benadryl because it made me sleepy during the infusion and for the rest of the day.
I get CBC and complete metabolic panel drawn every month. CMP tells how your kidneys are functioning. Also, it includes electrolytes, glucose, liver enzymes.
Hope this helps. Good luck.
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