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!
10g dose #1, then wait a week.
20g dose #2, then wait two weeks.
30g dose #3, then wait three weeks.
40g dose #4 (final dose). Now start once a month infusions.
Hope that helps.
My husband was diagnosed with CVID 7 years ago. He has been on IVIG in clinic monthly this whole time. Treatment change was needed 2 fold, first the dose was recommended to be doubled from 30G to 60G monthly, subQ at home was so that we could manage time needed for such a high dose, and second to manage or lesson the monthly illness cycle that he had dealt with all these years.
Started Hyqvia ramp up dose #1 of 15g one needle he was in mild/severe pain for 24 hours but no side effects. Dose #2 was 30g severe pain for 24 hours and had very mild leaking from infusion site, mild upset stomach but not horrible side effects. He has an extremely physical fabrication job. We knew he could no longer do infusion mid week so dose #3 was moved to a Thursday and he took Friday off. At the advice of Baxter and the specialist dose #3 we increased the needle size up to a #12, along with 2 needle sites higher on his belly, his belly pain problem was relieved. I had read this discussion by that point so I was very concerned when we were infusing 45g in less time than we had done 30g but we went through with it. Increase needle size did relieve the pain problem & we celebrated for about 12 hours before he started with mild vomiting and severe diarrhea for 5 days.
Unlike some of you my husband is a bigger guy, has a bit of a belly we never imagined that he would have any problem with SubQ.
Went to the Dr last week and detailed it all out. His Dr is awesome and we have a great relationship will him, so he is conferring with other Drs here and the specialist in Milwaukee. We are still in limbo as to what will happen next, maybe lower dose and slower speed, or maybe jumping ship completely. DH states he will not do the 45 dose again. Dose #4 should have been scheduled next week... I will try to add here how this ends up working out for us.
I am sorry to hear about your husband's difficult time. My father is also big guy with a pretty robust belly, so I was also surprised by his discomfort. I also wondered if the nurses were a little bit more "cavalier" about his infusions (i.e. doing them too fast....) because his belly looked so big.
First, I am going to be optimistic that the diarrhea is an atypical side effect and will not be a routine effect. Did he ever have that with the IVIG? I would try to gather as much info on your own as you can by calling the nurse at Baxter and seeing what they think.
Unfortunately, often the doctors are not very knowledgeable about how the infusions actually occur. The Baxter nurses often know more..... but probably the home nurses helping you guys are not very experienced with Hyqvia yet.
At a minimum, I would think they need to slow down the infusion. What speeds have the nurses been running the infusion? I would insist now (and get the doctor on board) that they slow down the infusion to the maximum recommended time at each infusion rate of the ladder. 15 minutes. Ask the doctor to call the Infusion company to adjust the order. It may also be that your husband cannot increase to the highest rate of infusion.... he may need to stop at a lower rate. And maybe his "ladder" of doses should be spaced out a bit more. For example, he could try a next dose of 30g or 40g with the bigger needle, and a slower rate. If it goes ok, then he could try the 45g again with the slower rate.
I found it pretty stressful having to watch the nurses and "remind" them of their job, but it was the only way unfortunately. I write down exactly what they do (rate of infusion and how many minutes at the rate) in the Baxter Log book since they don't usually have the record with them of what the nurse did last time.
Also - does your husband have any scars on his belly? If so, make sure the nurses do not put the needles in close to the scars.
Also, ask the doctor what if you could have an anti-nausea medicine at home, just in case, and what to do if the diarrhea returns. These side effects are very treatable. But it may be that as his body gets "used to" the infusions, they will not be as much of an issue. And make sure he doesn't get dehydrated if he gets diarrhea. You loose a lot of water with diarrhea.
Good luck. I hope your husband can tolerate another try. My Dad's glad that he didn't get up, since now he tolerates it pretty well. And he was like your husband - he was so uncomfortable after one dose he wanted to stop taking it.