Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Well, my 4th Ivig is coming up, and I am feeling pretty good about it. However, the iv treatment itself is pretty awful....lots of pressure in my chest and arm. Headaches and pain in my joints. How do other people cope with this? I am also scared of needles, and usually faint pretty quick. This is surprising to others, as I look pretty brave I guess. Any words of wisdom out there?
Pressure in your chest? Hmm. That might be due to feeling nervous.
With respect to pain in the arm -- veins have no nerve endings, so any pain or pressure that you might feel there comes from either the tape holding the IV in place, or a bruise (if the nurse missed).
> Headaches and pain in my joints.
Headaches are common side-effects. I drink a ton of fluid the day before, of, and after my IVIG, and I haven't had any symptoms since my first time (and I think I'm on number 5 or 6 now).
> How do other people cope with this?
I bring my iPad along and surf the web while I sit there -- largely because I can't stand watching "The Price Is Right", which the other patients really get into.
I also have my iPhone on me, and use it to chat with my wife, chat with the nurses, and try to remain upbeat.
I also drape a warming blanket over my arm (with the IV in it); it helps me to forget that it's there.
Lastly, I've found that I prefer to take the IV further up my arm (on top of my arm, closer to my elbow). This feels fine, and doesn't hurt me nearly as much as having it closer to my hand.
hydrate hydrate hydrate...the day before during and after...i drink water and no calorie sports drinks.....
if you are feeling flu like you may need them to slow your rate...it will reduce many symptoms
i take my snacks, portable dvd player, book and my soft blankets..i am there 6-8 hrs so i spend the day and i make sure i am comfortable..
i cope becuase i know it is what will keep me well....
good luck
I draped a warming blanket over my arm last time, and my husband came to the hospital and rubbed my arm which seemed to help.
My flow rate is very low, I was only able to have a rate of 50, moving to 100 near the end of the day. The first time was 200, then it's gotten lower with each treatment.
How much fluid are you guys drinking prior to treatment? I thought i drank a lot before my last iv, but this is all so new to me that any info from others is very welcome.
This treatment has allowed me to do so much more, and feel so much better. I haven't had a cold or recurrence of sinus infection or many of the other symptoms that I experienced prior to iv treatment, so I know that I need to find a way to deal with this.
> they say that they have to progress up my arm; if they cant
> get the needle in my arm, then they wont be able to use my hands
> and will have to go for my feet. I have very painful sensitive hands,
I cannot (for the life of me) imagine why they would insist on using hands first. The nurses who manage my infusions all appear to be very senior (each of them has 20+ years of experience), and when I said to them last time: "I think that I'd rather you go further up my arm (like last time) because doing it near my hand kinda hurt", the one nurse said: "No problem at all, sorry about that!"
So ... I prefer to get it done on the top of my arm, about mid-way between my wrist and elbow. Works great, barely feel it.
> Have nurses mentioned this need to use hands first
> to anyone before?
I think that if I encountered a nurse who was really insistent, I would politely ask if there wasn't any other nurse who could do it in the forearm.
> My flow rate is very low, I was only able to have a rate of
> 50, moving to 100 near the end of the day. The first time
> was 200, then it's gotten lower with each treatment.
Are they lowering it because of headaches or ill effects?
> How much fluid are you guys drinking prior to treatment?
Day before: about 3 bottles of (low sugar) gatorade, 1 coffee, maybe 2 teas.
Morning of: 1 decaf tea before heading out, 1 500mL bottle of (low sugar) gatorade per hour during the infusion (keeping in mind that I'm only there for 3 hours tops).
When I get home, I take an Advil. That's about it.
The flow rate is being lowered because of ill effects; I hope that taking anti stress meds will help that.
After reading the amount you drink prior to an iv, I can honestly say that I haven't had anywhere near that amount of liquid, but I will now!
It's really nice to be able to chat with other people who also are going through the same treatments, and I thank you guys very much for the info
insist on the iv where you are most comfortable they are there to make your life easier not for you to make theirs easier....
good idea to take something maybe it will help with the anxiety....
the more treatments you have the easier it gets your body does adjust so hang in there
i have noticed that when i have a dose increase it takes my body a few treatments to get used to it again...
just remember it is your body and you are in control......
it does get better the more treatments you have....also take advil or tylenol for the headaches and aches...i take loritab it helps me with any side effects....i also pre med with iv zophran (for nausea)
i started orencia 6 mths ago for my sjorgens that i have with cvid and it has taken 6 mths for my body to adjust at first like the igg my body was achy and miserable the more treatments i have the better it is getting.... had one tues and had really bad aches that night which is a great improvement from the first few i had....
when you get sick less it really does make it all worth the effort so hang in there..... is your doc open to a port??? some are some arent it has been a lifesaver for me...with bad viens i sometimes had to be stuck 2-5 times to get a vien and many times had to change sites before infusion was complete,,,with the port much easier and no needle anxiety..i get 60 g x 3 wks so thats a lot of stuff to try to pump into bad veins.... since getting the port my veins have come back and now getting blood drawn at my reg docs office isnt near as bad...my veins have come back since they are not used all the time....
hang in there....
> that taking anti stress meds will help that.
According to my immunlogist at Sick Kid's Hospital (in Toronto), the primary cause of headaches is dehydration. In my experience, I drink enough during the IVIG infusion that I'm going to the washroom every 15 minutes... (The first time that I had IVIG, I barely had anything to drink, and the resultant headache was brutal.)
I think that drinking a lot and adjusting infusion rates are your main ways to alleviate the headache pain. There are some other options, but most people should try those two things first. I would definitely not take any other medication (other than advil, of course) prior to the infusion without first consulting your doctor.