First round of Ivig
AnonymousApril 15, 2009 at 9:36 pm
I’ve come here to this forum since I’ve been diagnosed with CIDP at the end of March. I was suspected of having MS up until then.
I had my first round of Ivig in hospital last week. The first day went well, no side effects then the 2nd day before the 2nd infusion I copped a real hammering. My loading dose was over 5 days and each infusion took around 2 hours.
I had all the atypical symptoms. It has now been 5 days since the last infusion and I still feel terrible.
Thank goodness I found this forum, now I know that I should have been put on pre-Ivig therapy before I started.
Now I know why I just about drank the entire hospital’s supply of bottled water in one day!
Today I woke up and I have a really bad migraine, haven’t had one of these in 10 or more years.
Should I ring my Neurologist or try and see my regular physician?
My Neuro is a long way from where I live.
Is this cure worse than the disease I wonder?
Right now I think it is!
AnonymousApril 16, 2009 at 12:37 am
Welcome, it might help you to keep a diary of how you feel for the next while.
As far as not feeling well after IVIG try to get pre medicated, it really helps me. I also take the meds for 2 days after IVIG or else I get pretty sick. Chocolate also helps 😀
Hang in there,
April 16, 2009 at 10:12 am
sorry no info
AnonymousApril 16, 2009 at 5:50 pm
Keeping a record of what dose you got and for how long is key to that headache thing tho….
I started out on 5-6 hour infusions until it was shortened to 3.. Now IF the rate is just right? I can do a huge dose in two-1/2 hours. BUT, if you’re not used to it, not prepared, not pre-medicated you will get some killer headaches!
IF I were you? I’d call my neuro and ask: is 2 hours right for me now? I’m getting very bad headaches and they don’t seem to go away soon [a day or less] Am I doing something wrong? Can you help me?
I will bet asking these questions this way will change things dramatically. At least, I sure hope so!
Yes, your doc can be a long way away…but that telephone is something he/she can’t ignore for long. And don’t let calls go un-returned!
I’m crossing my fingers that it ultmitaly helps you – we all need all that help we can get!
AnonymousApril 17, 2009 at 5:35 am
Hey, thanks everyone.
It is great that this forum is here. There are not a lot of people getting these infusions where I live so I am sort of a one off.
NOW I know that pre medicating is the way to go I will make sure that I am ready.
I really think that they pumped it in too quickly for me as a loading dose. Especially as I have so many allergies, the odds of me getting a reaction must have been up high on the list.
Some of the nurses just can’t be bothered having to run in and out to check on you every 15 so when there were no obvious symptoms they pushed the dose up.
Some nurses were very good, others didn’t care so much, they just wanted to get it over with. I’m not sure of how it works but I had 2 large bottles 200mls and one 50ml bottle each infusion.
This equated to my body weight, I don’t know how they work it out from there but not too many of them had much experience with “Intragam P.”
I still feel terrible but the headache has gone. I am left with burning in my back and neck and a dull headache that won’t go.
The Doc I was under pushed me to take Ibuprofen, my stomach doesn’t get on with this one so I have gone back to paracetamol. I am also taking an antihistamine which seems to help somewhat.
Does it make everyone else out there really TIRED and DRAINED, cause I sure feel that way.
Thanks all for your info and thoughts, much appreciated.
AnonymousApril 17, 2009 at 6:28 am
I’m a member of “Medhelp” and they have a great symptom / treatment tracker. I have started to keep notes in this in the auto immune tracker of when I feel terrible and when I get treatment, reactions etc. There are mood trackers, pain trackers, all sorts, it is very clever.
This is a really good tool to use. I made suggestions when they were setting up the Multiple Sclerosis tracker and they have modified that quite a bit now and lots of folks are using it.
Maybe some of you know of this site, if not it is worth a look. I have made some great friends there and being able to track my symptoms which I forget in a heartbeat is really useful.
The members on the MS site have been just so supportive of me in my quest to get a diagnosis. They are a great bunch of fellow travellers in the quest for treatment and help.
The site also has a “Ask the Doctor” section and there are many docs who give their time free to folks like us with lots of questions. All in all a great general purpose and illness specific site. Lots of medical articles, forum members stories and heaps of great friends to meet.
Hope you enjoy your visit there, some of you I know will be very familiar with it, for others that don’t know, don’t be shy, join up. No cost to you.
P.S. No I don’t work for them!
AnonymousApril 17, 2009 at 6:54 am
After reading you lead post, I said, “Thats exactly what happened to me”
I had a huge headache followed by days of nausea and really felt bad.
I did everything everyone said, and still suffered.
My headache was so bad, I took Ibuprophen, Tramadol, and percosett and still had it. Couldn’t move my head. Then the nausea. YUCK!
The thought of I don’t know if I can do this every month came to mind repeatatively. I expelled alot of nasty that the IVIG neutralized. I even told
my wife, if this is like this every month, I don’t know if I can do it.
After the first one, the last 3 went really well. small headache, no nausea, just some flu like ache for 2 or 3 days which was tolerable. My body muscle popped right back. I suffered with noticeable symptoms since Jan 05.
Hang in there. it is totally worth it. You next treatment will Go Better!
AnonymousApril 17, 2009 at 9:24 am
As others have said, proper protocol was NOT followed in the administration of your IVIG.
My daughter is about 60 lbs (apx 27 kg) & she gets 20 grams of IVIG every 2 weeks. Her infusions, which go pretty quickly, last 2 hours & 45 minutes.
You need to arm yourself with the proper protocol so for next treatment you can teach them how to do it.
1) Drink LOTS of water. It’s important to be very well hydrated before, during & after IVIG infusions. We usually start the night before.
2) Premedicate with Tylenol or Motrin AND Benadryl. I think oral Benadryl is better than the IV kind as the IV kind burns when it goes in.
3) Start the infusion SLOWLY. It usually ramps up slowly every 15 minutes.
4) Every 15 minutes for the 1st hour your blood pressure, heart beat, & temp should be taken.
5) After the 1st hour your vitals should be taken every 30 minutes – when the speed ramps up.
6) Usually after that the IVIG is at full speed. Your vitals should be taken every hour. You need to make sure you are in tune with your body & let the nurses know if you feel anything is not quite right. It is perfectly acceptable to ask the nurse to slow down the infusion if you don’t feel right at any time.
Do you have home care available to you in Australia? That’s where the nurse comes to your home & gives you the infusion. It has helped tremendously with my daughter’s reactions.
AnonymousApril 17, 2009 at 6:25 pm
Thanks for all your replies. I am unable to take ibuprofen ( motrin ) as it upsets my stomach, I have GORD.
I will however, dose up on paracetemol ( I already take prescription only paracetemol and codeine ) 2x tds that I take for chronic pain, so I have to watch I don’t overdose. As my system is so used to it the effectiveness of dealing with my after shocks was very diminished, so much so that the Doc put me on Endone. ( oxycodone ) I may have to pursue that each time, I will ask my Neuro.
Benadryl sounds like a very good idea and I certainly get the drink drink drink thing, I have NEVER been so thirsty as what I was the day after the 1st infusion.
I don’t know where the water went the day after the 1st infusion because I certainly wasn’t running to the toilet all day. My body was definitely telling me I didn’t have enough on board even though I thought I was well hydrated, it certainly wasn’t enough.
The nurses did do my vitals every 15 minutes for an hour then ramped up the dose each 15 then it was at full speed. After that they checked my bp temp etc every hour. As the whole thing took approximately 2.5 hours they only came back once after the first hour.
No we can’t get home assistance for the infusions as far as I know. I would need to be completely incapacitated so in my case I need to attend a hospital as an inpatient or otherwise as an outpatient at a large hospital.
Where I live is a long way from my Neurologist and any hospital for that matter, he only works out of the private hospitals in our capital city.
When I went into hospital I was admitted to a public hospital on the north side of Brisbane under a friend of his (Dr) so that he could keep an eye on me. Otherwise I would have been looked after by a different Neurologist and I don’t want to ever do that. I have finally found someone who knows what my problems are.
Even though his care was by remote control the overall management of my stay in hospital was his. I haven’t seen him since my last visit for conduction studies so I am eagre to talk to him about my treatment so far.
I guess he was hoping that I wouldn’t have any side effects for the 1st treatment so I have no doubt the next course will be better prepared for.
I am keen to know what he has planned. He was talking every fortnight then reducing to every month but no doubt that depends on the amount of improvement I get from the infusions.
Another thing that happened and I would not have noticed except that a friend of mine did, was my right arm was really swollen from the last 2x day infusions. Is this an alllergic reaction? Or is it that perhaps I had a leak in my vein. The area was a bit itchy but I think that was from the sticking plaster, which I can be allergic to.
AnonymousApril 26, 2009 at 4:00 pm
While it’s not an ideal protocal, we ended up cutting our daughter’s dose in half to reduce the harsh aseptic meningitis symptoms that she gets from IVIG. Where she used to have nausea, nasty headaches, body aches and chills for a couple days after each treatment (and would have it again a week after treatment), she can now go do school the next day with minimal medication for the side effects.
As I said, it’s not ideal since it means more hospital visits, but it has greatly reduced her discomfort.
Even with half treatments, we have to go very slow with her infusion rate or her blood pressure drops dangerously. This is something that is only started in the past year, not sure why. A typical 1g/kg takes about 24 hours to get into her system, sometimes longer, sometimes shorter. I mention this only because you should always be aware that this can happen and you should be comfortable asking your nurses to check your vitals if you feel like something isn’t right.
As with other posts, pre-and post-hydration and pre-treating with benedryl and solumedral are important for her as well.
Good luck with your next round, hopefully you’ll find the right approach that minimize the negatives for you!
AnonymousApril 27, 2009 at 1:24 am
Please let us know when/if you begin to respond to the IVIG treatment in relation to the CIDP. I am curious to know, as I am now 3 weeks after my first 5-day IVIG dose and I have not shown any improvement. I ask because I did not see you mention feeling somewhat better right away as some people have reported with theirs. But I guess as I keep reading over and over, “The disease acts differently with everyone” and a certain amount of patience is in order. But please do let us know.
I hope you’re feeling much better soon!
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