The last time I went in, they put my IV right on the knuckle where my pointer finger joins my hand ... talk about WEIRD!! And it didn't feel too good either. I go for my next infusion next Wednesday, and I am going to spend Tuesday getting GOOD and hydrated!!

Rolling veins are my problem. I think I am just out of luck.

Update us please, let me know how it went :)

I wrote an update but I must have not hit the add button. I guess that says something about how I feel.

They jumped from 128 to 180 and then went back down to 150. I got a constant headache so they backed down to 128 where I had a mild headache off and on. This morning I had a bad headache. As the day has gone on I have started feeling sick and running a fever and a back ache up and down my spine. This is still much better than last time when I had all of the above, a higher fever and crushing chest pain.

We are planning to stop at 128 next time and not going above that. I am debating on whether or not to ask them to stop at 100 and see how that goes. I would like to get done ASAP without bad side effects. If I can't get to where I can function the next day I will have to look into Subq which I am not really wanting to do right now.

I would suggest having them stop at 100. I can't believe they made such a huge jump! Sorry, but the nurses sound like morons. They should start no higher than 50, then 75 after at least 15 minutes, and go to 100 another 15 minutes after that. If you want to go to 125 at that point then do so, but only if you have no side effects! If you have side effects, they should stop the IV treat you for the side effects, then wait until you have no more symptoms before continuing with your treatment.

I hope the next one goes better for you!

Mine roll too ... plus I have valves ... don't actually know what that means, but it gives the nurses fits!

Couldn't sleep most of the night until I took a hydrocodone. I had a prescription for my back problems and got so desperate I decided to take one. I did manage to sleep for a few hours after taking it but this morning I still feel just as bad. I have pain that starts in the front of my head goes to my back and all the way down my spine, lessening in pain the further down it goes.

Does anyone else have these types of problems?

My nurse started at 32, then 64 then 128. I did not like him very much. He wasn't bad, he just made jokes that I did not find funny. My children would have loved the jokes but not me. They have two other nurses so I think I want to try one of the others next time. It was additionally annoying that he talked about how one of the nurses was amazing at starting IV's as he kept sticking me and noting that I have some of the toughest skin he has ever come across.

Thanks for understanding. I am debating right now between trying to have a cub scout meeting that is scheduled to happen at my house tonight, asking to have it moved to someone elses house or canceling all together. I keep thinking that surely it will get better as the day goes on. I know I have no way to really know what will happen but I just want to be able to do everything like it was before, without getting sick. It is an unrealistic dream but as a new person to all of this I am still in that way of thinking.

Thanks for listening,

Marilyn

Maryilyn take another hydrocodone and get some gatorade, any flavor you can tolerate, get a couple of them, slam one in ya as fast as you can and then keep drinking today until you headache goes away. This should work. I always keep gatorade in my house for those days.

Might I suggest not going over 100 next time, drinking LOTS of water the entire day before and during, then when done drink a big ol gatorade before bed? This would usually leave me with just a headache but not migraine. I would'nt push the cubscout meeting until you get some gatorade and see how you feel.

my port helps a ton my veins were just too bad. i dont even dread my infusions now since i had the port i ahve had the port since 5 mths after dx and have had it for almost 5 yrs works great makes IVIg easier. i was getting stuck 4-5 times and sometimes they had to restart another vien to finish the infusion i dreaded infusion time because of the IV much better with the port.

it has made my infusions bareable and not something i dread....

Drank the gaterade and felt a little better. Today I still have some back pain and occasional head pain but nothing unbearable. I have a call into my Dr.

The infusion nurse says "I really don't think it is the rate, maybe you need to get more meds before hand". Never mind that this is a drastic improvement over last month when the infusion rate was 400ml/hr.

Now, to wait patiently for a call. While this doctor if very knowledgeable of CVID and the resources for us he is primarily an allergist and infusions are not his speciality. I hate to lose his expertise in the CVID treatment side. He is very willing to give me a prescription to take on trips, just in case I need them and calls me back within 24hrs of me leaving a message so many things are wonderful. He even referred me to the idf website and igliving magazine the same day I got the diagnosis. He is on the idf list of experts but the infusions are just not something he gets a lot of. He has had about 10 CVID patients but I am just frustrated with the side effects so far.

Thanks for listening.

Nurses (in general) don't have to suffer the side-effects after an infusion is too fast. They like to treat everyone the same, and when they find a patient who can't tolerate the speed used in the prescribing pamphlet, they have a fit. If they just once had to suffer through it, they would change their tune in a heartbeat. Trust us, you need to slow it down!!!

Sending hugs and best wishes! :)

Im at work so gonna get straight to the point: Infusion speed has everything to do with it my GOD lol. I've told people on here this before it is YOUR body and you are in charge of it. I would try even slower, yes you will be there longer but it makes a WORLD of difference. I went thru 4 brands and a year of messing with my infusion speeds before I finally had NO side effects :) I would drop to 100 and if you still have side effects see if you can get a different brand. Is your IgA low? Maybe go to Gamunex if it is?

I will definitely go even slower next time. Stopping them at 100 and see how it goes but I do worry that I need a different brand due to my IgA registering at

The speed is not the NURSE'S decision. Your physician should write very specific orders. The order should contain the starting speed, how often they can increase it and specifically state a maximum speed. It should also say what to do if you develop side effects . . mine say to stop the infusion for 15 minutes and go back to the speed where I tolerated the infusion without side effects
If a nurse goes against the physician's order, she could lose her license.

It's up to each one of us to know what is in the physician's orders, brand and speed, and make sure they are followed.

I swear my nurse has me at 400 by the end of the bottle. That's probably too fast, eh? How fast does your infusion go, Mark?