MemberDecember 15, 2023 at 9:45 am
i have been on IVIG for 5 years during which i have never had a crisis. at first it was done at the hospital. for the last 3 years i do it myself at home sub-cutaneously. No need to go into the veins. The infusion of Cuvitru takes about 4 hours once weekly. it has become a normal part of my life.
MemberDecember 15, 2023 at 9:58 am
All I can offer, is try not to be anxious or nervous. Both will cause muscular reactions which won’t be helpful.
MemberDecember 15, 2023 at 2:22 pm
From my experience, go in well hydrated. I’ve also found, at least for me, that it’s easier for the nurse to find a good vein on the back of my hands. Doing this also prevents most occlusions compared to when I have them tap into the crook of my arm. Invariably, when I would get up to use the restroom, I’d set off the alarm on the IV pump. Of course, this wouldn’t happen if I asked to be disconnected before heading to the restroom, dragging the IV pole along with me. (I’m also on a couple diuretics and can never make it through the 3 1/2 hours 😉
MemberDecember 15, 2023 at 3:18 pm
Hi anne –
I too have been getting IVIGs for over 4 years.
Having Needle Anxiety does not help but I have learned over time to relax and stay well hydrated both the day before the infusion and the day of. I try to drink 5 sips of water where I would only take one. Fill up.
I go to the Infusion Lab, at my VA Hospital, every 4 weeks as the VA will not allow the medicine using the home subcutaneous method. I usually get plugged in by 9 AM and am on my way home about 1:30 PM. The drip is increased during the infusion to not overload your system.
The nurses are great and hit a different arm each infusion to try to save the veins. The back of the hand does not work for me and depending on the day, a variety of veins in my arms get used. Sometimes they can not find a vein so a Pick Team comes with an Ultrasound device that allows the Technician to see the veins and hits the vein. I have had the Pick Team a number of times but most times the Nurse does quite well. I also need the restroom during the infusions, due to the amount of water I drink. Having been getting IVIGs for some time, It seems I am now given the new Nurses to try to get the needle set in place. Some times that bothers me, but, they too need need experience with some one like me – needle anxiety.
I have not had a Crisis while undergoing IVIG treatment. At first I would notify the Nurse of my bathroom needs and they would unplug the power from the pump, detach the arm Blood Pressure cuff and I would drag the IVIG tree into the rest room. Now I detach the cuff and pull the power cord to the pump and make my way to the restroom. The Nurses watch us very carefully and are always ready to assist.
This might be helpful:
The IVIG is not a cure for me, and some times I cannot tell the difference after the Infusion. However, I can tell that I am due for another treatment 3 to 5 days before my next infusion as my fatigue increases, swallowing gets harder and my speech starts to deteriorate.
Good luck with your infusions – They do help.
MemberJanuary 1, 2024 at 7:19 pm
I’ve been on Soliris for almost 5 years now and recently after having a CT scan and then an MRI both with contrast and then it seemed impossible to get my line in. On December 20th it took four nurses and eleven sticks before they got it. To make matters worse the nurse mixed my meds before she put the line in. The ER wouldn’t let me bring them meds to them to do the line because they were already mixed. I was lucky enough to find a friend who got it in before the 24 hours was up on the medication. This was almost a $26,000 mistake. On 12/28/23 they put a chest port in me, so I no longer have a problem.
MemberDecember 15, 2023 at 3:29 pm
When I was first diagnosed with MG the IVIG was ordered by my neurologist of course the jr varsity medical center I was in did not have any
When it arrived a couple of days later I was in the ICU they hooked me up for a dose a day for 5 days
I was having trouble breathing talking and swallowing The difference was like Day and night I was much better
By the 5th day I was chomping at the bit to get out of there
That was back in February
Fast forward to October I had some tightness in my back jaws little swallowing issues also major leg pain
Went to the hospital
Seeing my chart and MG history I was checked in right away
Put on IVIG for three days cleared the breathing and swallowing issue right away
Doctors could not figure out my leg issues until a rheumatologist noticed earlier in the week I had what was going to be the first set of vaccines for meningitis a prerequisite to get into the Ultomiris infusion program.
My body had a very bad reaction to the vaccine. They are now looking at blood tests taken at the time I was in the hospital and since which certain markers are off the graph, like my Sed rate
Needless to say I am not going to get the second vaccine and now looking at the Vyvgart program
Hope this information helps
MemberDecember 15, 2023 at 4:50 pm
Thank you! I’m going to give it a go!
MemberDecember 15, 2023 at 7:46 pm
I was half way through my first, and only, IVIG, when my blood pressure rose and back hurt. I ended up in the hospital where doctors fought to save my kidneys from a nephrotoxc reaction. No more iVIG for me…
MemberDecember 16, 2023 at 8:24 pm
I had my first (5 day) infusion about three weeks ago. My veins are challenging so it took a bunch of sticks to get things going. The expert IV nurses used the outside of my forearm, which I never would have thought would work. I drank an extra 64 oz of water the two days prior to the IV, the day of, and 2 days after. My only side effects were fatigue (I slept for hour after the treatment) and headaches. I’ve had probably 8 more headaches since the infusion. I’ll be doing a 2 day infusion each month. For those on Facebook, there is a superior site, IVIG and SCIG Education and Discussion, managed by a nurse with over 40 years experience with infusions. The guidelines are right on target. I wish you all well!!
MemberDecember 18, 2023 at 10:00 am
If infusions are going to be a long term treatment plan for your Myasthenia Gravis , I would strongly urge you to consider having a port implanted . I resisted for a very long time even though it would take 2-3 people each time to find a vein,etc. My port implant was a quick procedure with no negative effects. I look back now and ask myself why I did not do this sooner.
MemberDecember 18, 2023 at 5:34 pm
I have IV treatments for 5 years. There’s really no discomfort. Due to drinking lots of water a couple days before and during my Infusion, I do require many trips to the bathroom. I do notice a small improvement. The Infusion Nurse starts me at 9:30 AM and I finish about 4:30.
MemberDecember 18, 2023 at 5:36 pm
Adding to the above. My Infusions are usually every 5 weeks.
MemberDecember 20, 2023 at 4:11 pm
My brother was recently diagnosed with MG he has difficulty swallowing most of the time, what is lVIG ? How does this help.
MemberDecember 22, 2023 at 7:38 pm
Thanks all! I’ve read enough to make me afraid. I trust my neuro and if he thinks it’s the best for me, I’m going to try it. I’ll do my best to hydrate, but swallowing is the reason I need it 🤷🏼♀️
MemberJanuary 3, 2024 at 5:58 pm
I had the initial five days in the hospital the first time and have had three more infusions at home, two days each month. I did not have any issues during the infusions but the labs from last month had a few things that had lower numbers than before but still in the normal range. My neurologist is working with the pharmacy to make the best plan for me going forward. The infusions have helped with my speech and it is clearer first thing in the morning and later in the evening. Best of luck to you. God bless.
MemberJanuary 5, 2024 at 2:42 pm
This is an update to my previous reply. I spoke with my neurologist yesterday and the infusions are going to be discontinued because of the low lab numbers. He will re-evaluate later on. He has put me on 5 mg of Prednisone along with my other medication. Will see how it goes. Good luck to all those who are on infusions. The nurse that came out was a sweetheart and I will miss her.
MemberJanuary 19, 2024 at 5:07 pm
Update to December post.
IVIG saved me back in 1992. I don’t know why I had such a bad reaction this time. Neurologist said no more.
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