When my insurance company moves along, I'll have my first IVIG.
When I do, I've heard from many of you that if the rate of flow is too high for your body, it causes very, very bad headaches. I'd like to know, when they tell me the rate they are going to give me the first time, I have an idea if it might be too high. Then, maybe, I can get them to slow the rate or just be satisfied that it's a good place to start. Luckily, I'm pain free, and a pain wimp and don't want to go down that road if I can help it.
Thank you all for your input. You guys are wonderful!
Hi Joe,
I noticed you’re in Nashville like me, are you going to
Vanderbilt infusion center? That’s where I went and have my
second treatment next week. I was told to drink a ton of water
Maybe a few days before and all through the week of infusion. They
Give you Tylenol and benadyrl too which helps. They basically
Give the dose of 2g per kg of weight, then divide that
Over the 4 or 5 days. With me they started the infusion slow then
Bumped it up every hour or so. One day I felt a mild headache about
To start so I took advil and bumped the infusion rate back to the
Level before and never went above it. I had a good experience with that.
Ask questions about how much you’re getting and what rate so you’ll know
If you need to adjust. Congrats getting approved!
I'll be going to Alana HealthCare Infusion Center. My neuro has referred me to Vandy and I'm waiting for them to finish review of my records and have me in for my first visit.
I'm an old hand at IVIG, I have been receiving it since April 2009. I am in Australia but the IVIG is the same with the same side effects. The info you have received so far is correct. Drink lots and lots of water, as much as you can tolerate BEFORE you get your infusion. Are you getting the loading dose which is administered over 5 days? This was my first encounter with IVIG. The first day I was good. The next day I was a cot case. I had the WORST headache I have ever encountered in my life! I have had lots of migraines but this left them for dead. If ONLY I had of researched the internet! Anyway, there are some really useful tips that I can pass on. Hopefully they will help you have a positive experience and not a terrible one. I can't stress enough that you drink a truck load of water, before during and after. I start increasing my water intake 2 days before my infusion. I also start taking a antihistamine tablet. Here they are called Phenergan, I think where you are is Benadryl. My tablets are 25 mgs and I take 1x twice a day the day before my infusion. I also take some strong pain medication the day before. I am taking prescription pain medication which I have anyway so that is already part of my routine. The morning of the infusion I take one of my Phenergan tablets and 2 Panadeine Forte which is codeine and paracetamol. I then drink at least 1 litre of water before I arrive at the hospital and I keep drinking lots throughout the infusion. I would probably consume at least 2 litres, I don't know what that is in your measurement but would be over a pint. I also make sure that the water is not chilled, I drink tap temperature water. My veins are tricky and after years of feeling like a pin cushion I worked out that chilled water made it harder to cannulate me, yuk! The Dr at the hospital pre-medicates me with 1x phenergan 25mgs, 1x Endone ( 5mgs oxycodone) 2x paracetamol, 1 x 10mg maxolon ( drug for nausea and vomiting). I know that sounds like a drug overdose but I would rather have all that on board and not have a reaction. Then once they start you off make sure they take it real slow with the infusion. Too quick with the infusion rate and this stuff is misery in a bottle. If you feel unwell, weird, have hot flushing in your face, hot spots like one hot arm or parts of your body go hot, TELL THE NURSING STAFF! I once had a weird reaction, my infusion arm went freezing cold, it felt like ice. Boy was I so sick after that one. The nurses should be watching you like a hawk and they should NOT increase the rate of your infusion if you are not feeling ok. The benefits are worth it, lots more energy and some gains if sometimes only slight in reflexes for me. Some have gone on to get better and resume a normal life. Sadly that is not me. I have had CIDP unknowingly since 2005 and was finally diagnosed in 2009. I have been on fortnightly IVIG ever since with only one break from it of 3 months but I relapsed so went back on it straight away. Luckily I didn't have to get another loading dose. Just remember, unwell, slow the rate. If you go armed with knowledge you will be one step ahead! Good luck!
I had to go through that too, it took about three weeks to get approved for an appointment, then they had to do another NCS/EMG. As far as the infusion rates go, they started me at 30, then bumped up to 60, 90, 120 etc. every hour or maybe 30 minutes... The nexdt day they started at 60, then 90, 120, etc. When I went to 140 is when I felt a slight headache starting so I took it back to 120 and never went above and was ok. From what I understand they start everyone off slow like that especially the first time, then bump it up and see how you tolerate it. If you have any side effects, they will take it back down. I'm guessing everyone is different in the rate they can tolerate, but they will start you slow to begin with.
Another thing too is that I felt some discomfort with the infusion going into my arm and it started to ache. They said it was because the liquid is cold going into your vein. They gave me a heat pack to put over the IV in my hand to warm it up as it went in and this helped too. Good luck!
Joe D said:
I'll be going to Alana HealthCare Infusion Center. My neuro has referred me to Vandy and I'm waiting for them to finish review of my records and have me in for my first visit.
Thank you trueblue06. It's patient to patient experience like this that helps us all. The nurse briefed me today. They give me benedryl and one other thing first. The nurse said also taking the steroids helps too. I'm on 60 MG of that daily. She said we would start the loading week at 40G of IVIG – Initial rate 180 ML rate = 3 – 3 ½ hours. She said they have gone as slow as 150 ML rate for a sensitive person to as high as 210 ML rate for someone who could handle it very well. I appreciate your input!
trueblue06 said:
Hi Joe,
I'm an old hand at IVIG, I have been receiving it since April 2009. I am in Australia but the IVIG is the same with the same side effects. The info you have received so far is correct. Drink lots and lots of water, as much as you can tolerate BEFORE you get your infusion. Are you getting the loading dose which is administered over 5 days? This was my first encounter with IVIG. The first day I was good. The next day I was a cot case. I had the WORST headache I have ever encountered in my life! I have had lots of migraines but this left them for dead. If ONLY I had of researched the internet! Anyway, there are some really useful tips that I can pass on. Hopefully they will help you have a positive experience and not a terrible one. I can't stress enough that you drink a truck load of water, before during and after. I start increasing my water intake 2 days before my infusion. I also start taking a antihistamine tablet. Here they are called Phenergan, I think where you are is Benadryl. My tablets are 25 mgs and I take 1x twice a day the day before my infusion. I also take some strong pain medication the day before. I am taking prescription pain medication which I have anyway so that is already part of my routine. The morning of the infusion I take one of my Phenergan tablets and 2 Panadeine Forte which is codeine and paracetamol. I then drink at least 1 litre of water before I arrive at the hospital and I keep drinking lots throughout the infusion. I would probably consume at least 2 litres, I don't know what that is in your measurement but would be over a pint. I also make sure that the water is not chilled, I drink tap temperature water. My veins are tricky and after years of feeling like a pin cushion I worked out that chilled water made it harder to cannulate me, yuk! The Dr at the hospital pre-medicates me with 1x phenergan 25mgs, 1x Endone ( 5mgs oxycodone) 2x paracetamol, 1 x 10mg maxolon ( drug for nausea and vomiting). I know that sounds like a drug overdose but I would rather have all that on board and not have a reaction. Then once they start you off make sure they take it real slow with the infusion. Too quick with the infusion rate and this stuff is misery in a bottle. If you feel unwell, weird, have hot flushing in your face, hot spots like one hot arm or parts of your body go hot, TELL THE NURSING STAFF! I once had a weird reaction, my infusion arm went freezing cold, it felt like ice. Boy was I so sick after that one. The nurses should be watching you like a hawk and they should NOT increase the rate of your infusion if you are not feeling ok. The benefits are worth it, lots more energy and some gains if sometimes only slight in reflexes for me. Some have gone on to get better and resume a normal life. Sadly that is not me. I have had CIDP unknowingly since 2005 and was finally diagnosed in 2009. I have been on fortnightly IVIG ever since with only one break from it of 3 months but I relapsed so went back on it straight away. Luckily I didn't have to get another loading dose. Just remember, unwell, slow the rate. If you go armed with knowledge you will be one step ahead! Good luck!
Hi Joe.... So glad you will get treatments. I started IVIg last month with 2 sessions, with 1 day in between. Each took 5 1/2 hours, so they drip drip driped it slowly. Very minor side effect of a headache (dull) in the middle of the night, but when I would get up in the morning, and get vertical, all was fine. I got the benedryl and tylenol and drank tons of water. AND the good news is, I have seen an incredible improvement in my reflexes, strength, walking, and just about everything else. I am so pumped! Good luck to you! barb
You are most welcome. If you think of anything else please ask. I also thought of something while reading another post. When the IVIG comes in from the blood bank it has of course been under refrigeration. When it is in this state it is quite thick and does not infuse very well, it is a very sticky substance . You will notice the bottle gets heaps of bubbles in the top of it the colder it is. You will notice them building up as the infusion goes in. What they do where I go is get my IVIG bottles in as early as they can and leave them to come up to room temperature. This might seem confusing but believe me, I have had doses that have been cold and have had bad reactions afterwards. One more thing I thought of was normally your dose depends on your body weight. In my case I have 3 bottles, 2 x 200mls and the other is 60mls. I don't know of course about how yours are done but generally the 2 large bottles are the same "batch number", meaning they have come from the same blood. My small bottle is ALWAYS a different batch number. Therefore the small bottle must be infused at the starting rate. It doesn't matter what order they are in but if they are increasing the rate they have to be the same batch. Most people wouldn't really think that matters but take it from me it does! Some inexperienced nurse quite a few years ago gave me the 2x200mls starting at 60mls per hour lowest rate, and increased up to the top rate of 240mls per hour. That was fine but the 60ml bottle was next and she didn't start it at 60mls but continued it at 240mls. I thought at the time that this was odd but didn't worry. 3 days later I was rushed to emergency and ended up in hospital really sick. I had terrible stomach cramps and nausea. They could find nothing physically "wrong" with me and because it wasn't the same hospital I think they thought I was putting it on. I most definitely was not. My friend who has the same disease has 3x 200mls bottles and they are all the same batch. I don't know why the Australian Blood Bank does it this way but something you should be aware of just in case you are sensitive to IVIG. Out of the 3 years I have been on it I have had 3 major reactions requiring hospital stays and any others have just been more of a hangover than anything else. Only thing is I didn't party hard to get the hangover! Now you are armed with all that knowledge you should just breeze through it with no problems. You would think that with time your body would get used to it but in my case, nope no such luck! Let us know how you get on. All the best True
In Canada the nurses err on the side of too slow a rate They wanted to be safe with a rate of 60. my specialist said the rate can be as high as 500, but this gives me a slight headache, so I prefer about 350.
I also need prednisone and this does have side effects. I have been getting IVIG for about 6 years now (monthly) and no problem. I did have an intense program of 4day in a row IVIG (during a relapse) where it bothered me . but result was worth it But on a regular 3 wk or monthly interval no problem
I should clarify that my starting rate is at 200 for first half hour or so before it is increased to 350, and my dose is 600 ml (3X 200 ml)(currently every 3 weeks) I weigh 250 lbs
But if IVIG is prescribed for 4 consecutive days, (as I have had twice in 6 years when relapsing) I would choose a reduced rate of around 100
phil said:
In Canada the nurses err on the side of too slow a rate They wanted to be safe with a rate of 60. my specialist said the rate can be as high as 500, but this gives me a slight headache, so I prefer about 350.
I also need prednisone and this does have side effects. I have been getting IVIG for about 6 years now (monthly) and no problem. I did have an intense program of 4day in a row IVIG (during a relapse) where it bothered me . but result was worth it But on a regular 3 wk or monthly interval no problem
After rereading the former posts, I do feel lucky that I tolerate the IVIG better than some. I have never had to take anything (antihistamines or anything else) to prepare . No one ever said anything about drinking water either, except one nurse did say that drinking water before putting the IV in made it easier for the nurse to hit the vein.
But I now know why the nurses seem overly concerned about how I am feeling during infusion ,and wanted to keep rate down , and I have assumed that some patients must have had adverse reactions, but when I questioned their concern and ask if they know of anyone having a reaction they wont comment
But bottom line is after around 100 IVIG treatments I have never had a problem except on the consecutive day thing ,the first time, but the next time I had the 4 days in a row( actually it was only a couple months ago as I just recently had this second relapse) I knew to get the rate reduced and was fine. I think really it was the high dose of prednisone that helped get me back into remission. I was on 60 mg, per day and am currently weaning down to 30 mg per day, and am looking forward to reducing further to a minimal dose , but suspect I will need both the IVIG and prednisone combo forever as I have a Lot of nerve damage, due to a long lapse in my diagnosis. My Neurologist says that many do not need the treatments forever tho, but when he tries to reduce me too much I quickly get into trouble
Sorry that this post is jumbled up and not in order, but I keep thinking of new things to add,
phil said:
I should clarify that my starting rate is at 200 for first half hour or so before it is increased to 350, and my dose is 600 ml (3X 200 ml)(currently every 3 weeks) I weigh 250 lbs
But if IVIG is prescribed for 4 consecutive days, (as I have had twice in 6 years when relapsing) I would choose a reduced rate of around 100
phil said:
In Canada the nurses err on the side of too slow a rate They wanted to be safe with a rate of 60. my specialist said the rate can be as high as 500, but this gives me a slight headache, so I prefer about 350.
I also need prednisone and this does have side effects. I have been getting IVIG for about 6 years now (monthly) and no problem. I did have an intense program of 4day in a row IVIG (during a relapse) where it bothered me . but result was worth it But on a regular 3 wk or monthly interval no problem
My dose of IVIG was today. I'll be getting 200 grams over five days. 40 grams per day. Two 20 gram bottles.
Today they started the infusion rate at 60 and went up to 180 in steps of 20 or so. The last 15 minutes was at 210. So far nothing unusual. I feel like always. The nurse did say many people have a tough time on Wednesdays with fatigue. I'll find out in two more days.
Joe , I got a headache the first time , had mine over a five hour period . I did not drink water the night before I do that now , I am also given Tylenol and Benadryl before treatment so my headache shave been less severe . My advice is to keep hydrated .
I hope you get your treatment soon , I have my next one tomorrow , This has been abad month symptom wise so Neurologist is waiting to see me for three months before ordering another Infusion !
Hope your infusions are going well. I'm not sure if you heard that there's large proteins with the ivig and drinking lots of water during and after help flush them out of your kidneys to keep them happy and healthy...
I get 30grams of ivig and they run it about 6 hours. I hate to share this with you but i still get a headaches sometimes, in the beginning i didnt get them, but in the last 6-9 months i have every time. Ask about any pre med.s you might need. Best of luck with your first treatment, the benefits out weigh the headaches in my case. God Bless You! Brenda
60 is the starting rate it appears world wide. I'm surprised that the nurse said fatigue is an issue? My Ivig "buddy" with the same disease and myself find it is quite the opposite! We bounce around for the first few days energy wise, for up to a week then slowly find that we are getting exhausted and everything slows down. When we go for our next dose we are very tired, then infusion time and we go back to big burst of energy! I remember when my reactions were severe I would be in bed for up to 3 days. I did feel exhausted but I feel it had more to do with the bad reaction than the Ivig itself. I see you are on a loading dose over the 5 days. You may not have started to get a reaction yet. Watch out for it over the next few days as I did say in my long reply to you that I was fine with the first infusion then fell in a screaming heap the next day. I see they didn't go up to 240 but only to 210. As I may have told you some folk can start at the top rate with no side effects but of course folks like me can only have it a step at a time. They should never ever assume that you can start at a higher rate and my advice is don't ever let them do it to you regardless of how well you appear to tolerate it. My buddy has NO side effects normally but from time to time she does get a bad headache along with a few other problems. The nursing staff always start her slowly and work their way up. Hope you continue to breeze through this with no nasties. Just remember to keep the water topped up. I will check to see how you are going. True
I had my Infusiontoday , am feeling really cold , weather is in the 70,s here and I am in asweater ad had a blanket over me the whole tiem . I have a 'headiness' and weakness . I had my pains the whole tie during the infusion , Because my symptoms have been getting worse Doctor has decide dto give me athree monts off it and then go back to he rin June to see her . Has anyone else been taken off it ? As I type I have pricklng sensations all over even my face and eyelids , I am so tired of all this but I must remember it could be a lot worse
Third treatment today at the same stepped rate I listed above. It takes about 3 1/2 hours. No side effects. I am on predisone 60 mg so I imagine that helps. They give me two Tylenol and two benedril before every treatment. I haven't noticed any improvement yet. As I recall many of you said you didn't notice anything until the second week at least.
Joe glad to hear you are not having any ill affects , seems like you are getting the Infusion very fast My Neuro says it is not good to be given it fast . Mine takes about 6 hours . I too get Pre meds only one of each though .