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.
My 72 year old Dad recently started IVIG after a string of 7 UTIs in a row. He is transitioning to Hyqvia at home, and has been having some discomfort/bloating/"pain" after his infusions. Anyone have this?
He is on the ramp up period - his last dose of 30g (300ml) was divided into two needles. So 150ml into each needle. His final dose next month will be 40g (400ml). A nurse comes to infuse since he lives alone and cannot manage it on his own. I have been there every time so far just to make sure he tolerates everything ok and is safe.
With his last two infusions he did ok during the most of the infusion, but suddenly close to end he complained.... "I don't feel great". He said he felt bloated/uncomfortable and even used the word "pain". He was breathing fast and shallow, saying it was uncomfortable to take a deep breath from the swelling. In both cases he was better by the next day. With the last dose he took a nap immediately afterwards, but was so uncomfortable he said... "I don't think I want to take this anymore....."
Does anyone else feel like this? Does it get better? How fast/slow do you do your infusion?
My Dad is NOT a complainer. He has a bunch of medical problems including almost being killed when hit by a taxi and is now paralyzed, so he has experienced horrific pain. So his discomfort concerns me.
Unfortunately the nurses who come to administer it are not experienced with Hyqvia and confuse it with the other weekly SCIG meds. Maybe they are forgetting it only goes into two needles instead of four and that his volume received is so much greater than other patients on other SCIG (isn't it?)? One nurse said "EVERYONE feels like that! It's normal! Bye....!". She actually refused to slow down the infusion even though I asked her to because of his complaints the last time. Ugh.
Any thoughts? Thank you!
He is on the ramp up period - his last dose of 30g (300ml) was divided into two needles. So 150ml into each needle. His final dose next month will be 40g (400ml). A nurse comes to infuse since he lives alone and cannot manage it on his own. I have been there every time so far just to make sure he tolerates everything ok and is safe.
With his last two infusions he did ok during the most of the infusion, but suddenly close to end he complained.... "I don't feel great". He said he felt bloated/uncomfortable and even used the word "pain". He was breathing fast and shallow, saying it was uncomfortable to take a deep breath from the swelling. In both cases he was better by the next day. With the last dose he took a nap immediately afterwards, but was so uncomfortable he said... "I don't think I want to take this anymore....."
Does anyone else feel like this? Does it get better? How fast/slow do you do your infusion?
My Dad is NOT a complainer. He has a bunch of medical problems including almost being killed when hit by a taxi and is now paralyzed, so he has experienced horrific pain. So his discomfort concerns me.
Unfortunately the nurses who come to administer it are not experienced with Hyqvia and confuse it with the other weekly SCIG meds. Maybe they are forgetting it only goes into two needles instead of four and that his volume received is so much greater than other patients on other SCIG (isn't it?)? One nurse said "EVERYONE feels like that! It's normal! Bye....!". She actually refused to slow down the infusion even though I asked her to because of his complaints the last time. Ugh.
Any thoughts? Thank you!
When the nurses at our Infusion Company admitted they were not experienced with Hyqvia, I started calling Baxter as you suggested. How helpful. They immediately sent out a bunch of literature and an Infusion Log book that is helpful. The Baxter nurse kept in touch with me for a few infusions to give advice.
First, we switched from the typical 9mm needle set to the 12mm needle set. This goes a tiny bit deeper, and for some folks gives more area for the medication to infuse. That helped a little, but he was still very uncomfortable. We had to push the nurses like crazy, but finally they let us slow down the infusion. We had to call the doctor and ask him to tell them, or they wouldn't do it. That was very frustrating.... The nurses are given a range of times to infuse at each infusion rate, and they were favoring the shortest possible times at each rate (and for infusing the initial Hyluronidase) so that the infusion would be done sooner. That is wrong. The goal is to have the patient TOLERATE his infusion, and the nurses should know better than us that slower rates = better tolerance. So his last infusion I forced them to do the maximum time at each speed (15 minutes, and they also did the Hyluronidase longer) and we didn't increase the rate to the top speed. We stopped one speed below. He did very well, with almost no side effects.
What a difference.
Thanks for the advice about taking more pre-meds. I will keep that in mind. It is tricky, as my father gets so tired from the benadryl that he falls asleep and has difficulty walking. He is high risk for falls and lives alone, so this is a problem. He takes the lowest dose benadryl.
Just curious - how quickly do you guys run your hyluronidase? Initially I was thinking that it is better to run that over the longer end of time they recommend so it has more time to break down the tissue so the pocket will be bigger. Again, it is hard to push the nurses to do this.
Finally, it is really disappointing to see how many mistakes the nurses made. I strongly encourage anyone switching over to Hyqvia now to do your research before you start, and even talk to the Baxter nurse to get their recommendations. Unfortunately, the infusion nurses confuse the Hyqvia with the other SCIG and they are different.
Here are some of the mistakes our nurses made, and they didn't believe me when I told them they were different for Hyqvia....
The infusion "ladder" of different rates and time at each rate is different for Hyqvia... especially for the different ramp up period. One nurse used to skip the lowest rates, saying "it doesn't matter...". That's a no-no.
Hyqvia must given with 2 needles at the most - NEVER 4. I still can't get one nurse to believe that one.
Hyqvia sites in the abdomen must be above the belly button, never below the belly button. Our nurses did his first infusion in the wrong place. Great.
The Hyqvia pump is different than the pumps for the other SCIG. One of our nurses had never seen it before, and wasn't comfortable using it. Instead of starting his infusion at the initial slow rate of 10cc/hr for 5-15min, she started it at 260cc/hr. Of course, we had no idea. Fortunately, several minutes later she realized it sounded a little "fast", and she slowed it down.
We also learned that this medication is so new that my Dad's doctor didn't even understand how it is given. His doctor thought it only took 1 hour to infuse.... start to finish... which I suspect was what he remembered when hearing about the medication from a drug rep trying to promote it. Well, in fact the average total infusion time is 2.5hrs. That average includes petite young women as well as my 6 foot 2 inch Dad, who obviously would need more time for his higher dose. So his doctor didn't realize that the nurses were being too aggressive and infusing too fast because he thought they were already being conservative.
So I realize now that it is best for everyone to be their own advocate if they are going to try Hyqvia. Call Baxter and get their information mailed to you before you start, and I recommend checking in with the nurse for advice.
In the long run, it will work out well for my father I think.
Now if we could only get his infusion company to send out the same nurse he had last time. So far he has had a different nurse every single week. Ugh.
My Dad is doing much better with his infusions now. I think a combination of slowing down his infusions, the slightly deeper needle, and adjustments his body has made over time have helped tremendously. He also has had multiple abdominal surgeries in the past in the areas where he infuses, and we have wondered if some of his scar tissue may have made it a little harder for the medicine to diffuse around. This may have made his infusions a little hard, but fortunately will not be an issue for you (I hope).
I really wish you the best with your infusion this week. Your body type is very similar to mine and I have wondered how I would do with these infusions. I would insist that they start with the longest infusion time for each "step" up the infusion ladder (5-15' is the usual range). Let your body adjust to it slowly. Only after you have reached your full dose of 40g at once, and have tolerated it well for several doses at a slow infusion speed, would I try to increase the speed. That's my prejudice after seeing my father's experience.
It is routine that everyone takes tylenol and benadryl before they have an IVIG or SCIG infusion. These two medicines help prevent some of the side effects of the infusion and help prevent mild allergic type reactions that some will have to the IVIG... which is a blood product. Actually, it is routine to take the anti-histamine with this infusion. I am very surprised your doctor doesn't require it..... especially for the first infusion. In fact, our nurses all strongly encourage taking it indefinitely. This is because even if you don't have an allergic reaction to IVIG today, you might have one tomorrow. This is because every time you get it it is comprised of a a mix of different Immunoglobulin from different people. No two doses are the same. So there might be something new there that you have a reaction to.
Is there a reason you are worried about the benadryl? I admit, I do dislike it for my Dad because it makes him very tired and difficult for him to care for himself. But I will make sure he continues to take it. So far he hasn't had any reaction (rash/hives).
By any chance did you call Baxter and ask them for their patient information kit? I strongly recommend it. They also have a patient advocacy program, where the advocates often have Immunodeficiencies and take IVIG/SCIG themselves, and can be a source of morale support.
Good luck to you this week. Let us know how it goes. I really hope it helps you!
Pretty busy. I just don't want to be knocked out for the evening after infusion. Tylenol and water are no big deal. I am picking up some Benedryl today to be safe. Does your dad drInk a certain Amount of Gatorade the day before, of and after or just water? I'm hoping I have as good of an outcome as he did:) has his infections stopped?
My Dad really tries to stay hydrated already because of his other medical problems, and he just keeps up his normal routine during the SCIG. He drinks about 2-3 liters of fluid a day. He's a big guy (almost 6 foot 2 inch), so that's more than you would need. It would be great if you drink 2 liters, which is the classic 8 glasses of liquid. That is two of those large Gatorades. My Dad usually drinks the low calorie G2 version of Gatorade or Powerade zero (no sugar). It doesn't really matter if it you drink water or sports drinks. I would just avoid drinking a lot of alcohol and/or coffee around your infusion days.
Honestly, I would accept that the evening after your infusion is quiet rest time for you. Just go with it... take the benadryl... watch lazy TV and order out food... and get to bed early. Your 10 year old is mature enough that once a month rest night for Mom is something that he/she can work around.
My Dad has been doing well since starting IVIG in March of this year. No infections since starting treatment. I hope you will be telling us the same, very soon!
Good luck.
The nice thing about the Hyqvia is that it is much less likely to give you headaches. My Dad had headaches with the IVIG, but not HYQVIA.
Keep us posted on how your next infusions go.
Wishing you good luck with your next infusion... this week? Keep it slow!
My father is still using the slightly longer 12mm needle for the infusion so I'm not sure if that is helping the product disseminate a little better. And keep it going slow....