Newbie here... So many questions! Can I pick your brains a little?
about 3 weeks ago I had my first IVIG treatment for my CVID - 500 mg of Privigen. I am newly diagnosed (about 2 months). The allergist told me the infusion would last 5 to 6 hours. There is just one nurse in my health center that does the IVIG and she will only make appts for 9:20 am. Being a night owl this is really not my preference, but nothing to be done. She is the queen Bee. She said the treatment only needed to be 3 hours long. She came in and checked my vitals at regular intervals and said I was doing well. I napped some during the treatment. I was pre treated with Tylenol and Ceterizine. Maybe Benedryl would work better??? So I had 500 mg of Privigen in 3 hours.
I felt fine for about 12 hours after finishing the infusion. Drank lots of water before and during the treatment. After 12 hours I developed a severe migraine and low grade fever - about 100 to 101. I tried vicodin for 2 days and it made me sea sick so I switched to just excedrin. Nothing really touched the headache, but the vicodin at least let me sleep. On the 4th day after treatment I finally remembered where I had stashed my old Maxalt and was pleased to see it was still in date. That worked for me in about 20 minutes. The fever and a remnant of the headache ebbed and waned for the next few days.
I have had migraines since I was 16 - but they have been mostly absent for the past few years thanks to some prophylactic meds and menapause. From what have read it looks like with my history I may be predisposed to a migraine reaction to the IVIG.
So - my question is does the rate of infusion really make a difference in the intensity of side effects? Who do I take it up with - the doctor or the nurse?
I emailed the doctor and described my symptoms and he said "thanks for letting me know and take the Maxalt sooner next time".
Since the treatment I have had low grade fevers (about 99.5 to 100) and am producing some thick sticky greenish mucus in the lungs. I am keeping things under control with daily nebulizer and inhalers. (long history of allergies). Maybe I caught some bug during the treatment? It is given in the urgent care area of the clinic which seems an odd choice to me.
For the past several months I have making the rounds of various specialists during the quest to figure out why I get ill so often and am so anemic. At this point am not sure which doctor to call for what.
The allergist? My primary care doc? The hemotologist?
Many thanks for reading this long post - I really appreciate your insights.
Thanks so much for responding!! So sorry you not only had a reaction, but get the nasty headaches too. Were you a migraine sufferer before you got diagnosed? I have had migraines since I turned 16 (now 57). From what I've read, folks with migraines are more apt to get them with IVIG.Some fun!
I have now had 3 infusions. The second one was also 3 hours. I still got migraines about half a day later, but I took my Maxalt plus Excedrin and it actually took away the pain. The migraines returned over the next 4 days, but each time the Maxalt/Excedrin combo worked. No fever this time. So a definite improvement.
I started having respiratory issues (bad coughing, asthma, etc) the day before that treatment. I thought I was just having allergy symptoms and tried to ignore it, but finally I went to my Dr. and found I had both bronchitis and sinus infection. She put me on prednisone and antibiotics and I was still on those during my 3rd infusion.
The third infusion was the same 3 hours. Afterwards I rushed to get all sorts of stuff done before the migraines set in. They didn't come! The next day I saw my immunologist and asked him why this one was so much easier for me. He said either my body is getting used to the treatments or else the prednisone made it better. Made me wonder if 1 dose of prednisone as a pre-med would ward off the migraines. Too bad it messes up my blood sugar so much - Still it might be worth the trade off.
I will be curious to see how I react to infusion #4, without any prednisone in my system.
Infusion speed makes a HUGE difference if you are having side effects. Some people are 'speed demons" and can go 400ml/hr with zero side effects. If you are experincing what I call a "spinal" migraine that nothing would work on than your infusion was WAY too fast. Everyone has their own speed, mine was 100ml/hr. Pick a speed and tell the nurse you do not want to go over it because last time you were gravely ill because of it. You can always go faster the next time
I get 80 grams of Gamunex in less than 3 hours, with a top speed of 400. Than again, I've had over 350 infusions, dating back to 1980.
My advise is try not to establish a protocol with a lot of premeds. The less the better. Many patients have more problems with the premeds than they do with the IG drug. Sometimes a bag of saline before the infusion to increase hydration will solve the problem without drugs. There are several other things to try before you think you need heavy duty premeds forever.
Thanks for all the replies folks! I think things are going fairly well in infusion land. I had my 5th infusion yesterday. It went pretty well. A new nurse is giving them now. She went even faster - 30 grams in 2 1/2 hours. We almost stopped an hour in because I got very itchy and heavy feeling in my chest. After using my albuterol I felt better - still annoying itchiness, but better breathing. I felt my brains were scrambled though and it was a challenge to get my words out in the right order for a bit. Freaky! In retrospect I wish she had taken my vitals then. At the end of the session I was foggy and SO tired. I even felt unsure about driving home. I stopped at the coffee shop in the clinic for a mocha and looking at the food there made me realize my blood sugar was plummeting fast. A mocha and sweet treat later I felt more human again. but still felt foggy and unable to make any decisions. With a migraine I sometimes get this foggy brain feeling, but I had no aura or pain with this. Still a bit mystified. I went home to sleep for hours and feel more like myself.
So I am wondering - at what point will I see some positive results of the infusions besides lab results. I keep hoping for some more energy and fewer illnesses. I finally got over a 3 month bout of bronchitis. Is it too soon to see some improvement?
Thanks for all the replies folks! I think things are going fairly well in infusion land. I had my 5th infusion yesterday. It went pretty well. A new nurse is giving them now. She went even faster - 30 grams in 2 1/2 hours. We almost stopped an hour in because I got very itchy and heavy feeling in my chest. After using my albuterol I felt better - still annoying itchiness, but better breathing. I felt my brains were scrambled though and it was a challenge to get my words out in the right order for a bit. Freaky! In retrospect I wish she had taken my vitals then. At the end of the session I was foggy and SO tired. I even felt unsure about driving home. I stopped at the coffee shop in the clinic for a mocha and looking at the food there made me realize my blood sugar was plummeting fast. A mocha and sweet treat later I felt more human again. but still felt foggy and unable to make any decisions. With a migraine I sometimes get this foggy brain feeling, but I had no aura or pain with this. Still a bit mystified. I went home to sleep for hours and feel more like myself.
So I am wondering - at what point will I see some positive results of the infusions besides lab results. I keep hoping for some more energy and fewer illnesses. I finally got over a 3 month bout of bronchitis. Is it too soon to see some improvement?
Usually takes 6 months to a year
The Following 2 Users Say Thank You to cvidmama For This Useful Post: cleareye (09-08-2012), ricenoodles (12-02-2011)
Newbie here... So many questions! Can I pick your brains a little?
about 3 weeks ago I had my first IVIG treatment for my CVID - 500 mg of Privigen. I am newly diagnosed (about 2 months). The allergist told me the infusion would last 5 to 6 hours. There is just one nurse in my health center that does the IVIG and she will only make appts for 9:20 am. Being a night owl this is really not my preference, but nothing to be done. She is the queen Bee. She said the treatment only needed to be 3 hours long. She came in and checked my vitals at regular intervals and said I was doing well. I napped some during the treatment. I was pre treated with Tylenol and Ceterizine. Maybe Benedryl would work better??? So I had 500 mg of Privigen in 3 hours.
I felt fine for about 12 hours after finishing the infusion. Drank lots of water before and during the treatment. After 12 hours I developed a severe migraine and low grade fever - about 100 to 101. I tried vicodin for 2 days and it made me sea sick so I switched to just excedrin. Nothing really touched the headache, but the vicodin at least let me sleep. On the 4th day after treatment I finally remembered where I had stashed my old Maxalt and was pleased to see it was still in date. That worked for me in about 20 minutes. The fever and a remnant of the headache ebbed and waned for the next few days.
I have had migraines since I was 16 - but they have been mostly absent for the past few years thanks to some prophylactic meds and menapause. From what have read it looks like with my history I may be predisposed to a migraine reaction to the IVIG.
So - my question is does the rate of infusion really make a difference in the intensity of side effects? Who do I take it up with - the doctor or the nurse?
I emailed the doctor and described my symptoms and he said "thanks for letting me know and take the Maxalt sooner next time".
Since the treatment I have had low grade fevers (about 99.5 to 100) and am producing some thick sticky greenish mucus in the lungs. I am keeping things under control with daily nebulizer and inhalers. (long history of allergies). Maybe I caught some bug during the treatment? It is given in the urgent care area of the clinic which seems an odd choice to me.
For the past several months I have making the rounds of various specialists during the quest to figure out why I get ill so often and am so anemic. At this point am not sure which doctor to call for what.
The allergist? My primary care doc? The hemotologist?
Many thanks for reading this long post - I really appreciate your insights.
Yes!! the rate of the infusion makes a difference. First of all allow me to encourage you to do your homework on what ever you are being given. I am very well informed on what I am given and the side effects. Those infusion nurse will rush that medication in you, just to get you out of there. You must be very aware of the risks and the side effects which can cause greater problems. Yes, the infusions do take 5 to 6 hours, but please don't let them rush it in you..There is someone over her and don't allow her to intimidate you, because you do have rights as a patients. Take Care! Ladymgk
The Following User Says Thank You to Lady Mgk For This Useful Post: ricenoodles (02-16-2012)
The rate of infusion is EXTREMELY important and makes a huge difference on how you feel during and after. IMO an infusion should last at least 5 hours. For me personally, I get infused at a rate of 120ml per hour. Another important thing to remeber is that the Immune Globulin NEEDS to be at room temperature before infusing. If the product is cold, it will cause migraines and nausea. I am on Gammaguard so I would check the manufacturer information for Privigen. I DO recommend Benadryl as a pre-treatment. Have you considered going over to subQ? The side effects are nearly zero and you being that the product is stored in the fat cells, you dont have that "crashing" feeling around week 3 or 4 after IVIG.
Infusion speed is VERY individual. If you did it in 3 hours with NO ill effects after, then 3 hours is fine for you. Personally, it took me all day, I could never get over about 100-125 ml/hr and it was about a 6 hour day. If I went any faster I ended up sick as a dog, spinal migraine etc. I know others, I call them speed demons, who are in & out in a couple of hours and back at work. If you are sick after, then I would recommend going uber slow the next time. Maybe 100 ml/hr next time. If you feel great the next day then the next month push it up. Here's the thing, you can always go faster BUT you can never take it away once the speed was TOO fast. Hope that made sense
I get IVIG infusions every month, two days in a row. I get a huge dose and it takes about 2 1/2 hours (starting rate 24-max rate 240). I have 2 reactions each day no matter how fast or how slow we go-severe chills that can only be stopped with 50 mg of demerol. The nurses stop the infusion for a few minutes to let the demerol take effect and as soon as the chills stop they start it back up.
My situation is a little different-I have an IgG deficiency and an autoimmune blood disorder so the infusion is treating both conditions.
I have been getting the infusions for about a year and have seen a significant difference in my infection rate (was hospitalized 5 times last year and only twice this year).
When I first started getting the infusions I used to feel like I had the flu for 2-3 days and always got a migraine afterwards. Now I feel pretty good after, except occasionally I can feel a migraine coming on and I immediately take a Maxalt which usually takes care of it.
We tried the sub-q injections for a while but my doctor didn't feel that I was able to get a high enough dose (I am taking a higher dose than most people do) and I was getting abdominal abscesses at the injection sights.
I dread going each month for my infusions because of the reactions but do feel that they are helping me.
Newbie here... So many questions! Can I pick your brains a little?
Re: First IVIG treatment - is 3 hours too fast? 
So sorry you not only had a reaction, but get the nasty headaches too. Were you a migraine sufferer before you got diagnosed? I have had migraines since I turned 16 (now 57). From what I've read, folks with migraines are more apt to get them with IVIG.Some fun!
