I woke up with a headache again this morning, and I realized that one reason I've been having such a rough time with this first SubQ treatment is that I didn't take it seriously like I do the IVIG. I had so ingrained myself with the idea that there are fewer side effects from it that I didn't even think to hydrate in advance! I realize now that I need to treat SubQ with more respect, just like I did my IVIG treatments. I need to hydrate the day before, avoid caffeine the day of, and hydrate they day of (and after too).
I have felt very tired all day with a strong desire to sleep. I wonder how long it takes to feel the increased energy that SubQ is supposed to provide? I just took it easy and stayed in bed all day. I hope that I'll be able to work tomorrow, and that I don't wake up with the headache.
Aside from the headache and fatigue, the swelling has gone down on my belly significantly. I almost look like myself again! The knots are about 1/3 the size they were after the infusion on Friday. I used to wonder what people meant when they talked about "knots" in regards to SubQ, and now I know! They are large welts (about 3" in diameter) that are hard to the touch, and painful too. They literally feel like a hard, knotted-up muscle, except they are more painful than that. I don't know whether they are caused by the fluid from the infusion building up under the skin, or if they are actually a histamine reaction. I need to do more research on that and find out.
Later the same day...
I feel like I might be sick. The question is, is it CVID, a reaction to the Hizentra, or am I actually getting sick? My legs feel like rubber and I have a "sick taste" in my throat.
Hi! I just switched from Vivaglobin SubQ to Hizentra. I wanted to ask if your "after effects" have gotten any better? I infuse 100ml in six sites and completed my second treatment last night and I'm miserable! After my first infusion of Hizentra last week, I was sick for three days--nausea, vomiting, headaches. It was horrible. This week I changed tubing from 600 to 275, so it slowed my infusion rate from 2 hours to 5 and a half, so the after effects don't seem as strong, but they are still unpleasant. With Vivaglobin, I had no after effects from the treatment at all, but it was more trouble to give the infusion itself.
ReplyDeleteSo, please--if you could tell me whether or not these after effects have gone away, I would really appreciate it. At this point, I'm trying to decide if the ease of infusion for Hizentra is worth it dealing with the misery afterwards. The whole reason, for me, to go to home infusions instead of IvIg was because the IvIg made me so sick afterwards. If I know that this gets better once my body adjusts to it, then it might be worth it.
I'm sorry for writing a book, haha. It's been hard to find someone to ask. :) Thank you.
--Brandy
I too was swithched from vivaglobin to hyzentra last year. Since then I have had only minor reactions at the injection sites. I take a Benedril before and after the infusion and have had no adverse reactions. I don't do my treatments weekly like I did to start and have been infection free for several months. I feel very lucky to have had such good results after reading what could have happened. My Dr. started me on a new antibiotic last August and it knocked out the infection I was fighting for 2 years. I feel stronger then I have since this mess started almost 10 years ago. I wish you all a better time with your therapy and am sorry to hear about the problems you all are having. It's bad enought to feel bad but to have all this other stuff to deal with makes things worse.
DeleteHello, both of you. Sorry I've been away so long. A Brandy: I was only on Hizentra for a month and was having problems with migraines for a week after each treatment. During that month I switched immunologists to an IDF recommended immunologist. The new Dr put me on Gammard S/D (an IV form of IVIG) but had me take it as SubQ. The Gammagard S/D has nearly no IgA, and I have no IgA, so it was better than the Hizentra. Nevertheless, I still had significant side effects even after being on the Gammagard for nearly a year, so I stopped infusions and now take prophylactic antibiotics (and feel much better).
ReplyDeleteI learned a great trick for slowing my SubQ infusions down significantly, and that minimized my reactions. The trick is to request extra rate tubing from the pharmacy and put them together (one after the other) before connecting them to the needle tubing. The longer tubing slows the infusion down and makes it easier to absorb. Also, but a heating pad over the needles during your infusion, and that will help reduce the pain at the infusion site, and minimize the knots afterwards. I also switched to doing my infusion in the outer thighs (the side of my leg) about 5 inches or more above the knee). The pain would be gone by the next morning and so would the knots.
I have many more tips (some might be in the Tips for Successful Treatment page here), so respond here if you have more questions and I'll try to be better about responding. Again, sorry for the delay.
@Pam: Thanks for your comment, and I'm glad you're doing well. :)
Have CVID but no inf'tion problems. I have profound fatigue & host of tiring auto-immune dis.& constant pain post quad neck fusion. Dr. wants to start hizentra, but not seeing comments anywhere of big energy boost.Also, my migraines are pretty under control now. Tried IVIG when dxed-disaster-relentless migraines & lots sicker feeling & tired.Went to subq for a couple of mos.Migraines 3days wk.& no more energy. Not inclined to try again.also,is wt gain common? Input, please!!!
ReplyDeleteI started Hizentra a couple years ago and the first 2 infusions (I take 90cc's) I got horrible migraines that went away over time. I took the medicine for a year then got this i'm all cured, there's nothing wrong with me denial phase thing and stopped treatment. Luckily I never got sick but at the end of the year my IgG's were down into the low 400's. So last December I started again. Had a site reaction which went away after 2 weeks (lots of swelling). Did treatment for 4 weeks and stopped again. So i'm back on the wagon as of last saturday and the migraine returned for this cycle which i'm sure will go away eventually. This is usually how it goes for me: take medicine, sleep for 15 hours, wake up SUPER hungry, eat everything (almost), then sleep, then energized. The medicine causing me to be hungry is good cause I forget to eat (which has made it difficult to lose weight) so it's a good thing for me. I got so used to not eating when I had pneumonia for a little less than a year that it became a habit. It's disturbingly impressive what I can eat after i've had my infusion then sleep. Anyways, that's my experience with it all. I plan on staying on the medicine now... who knows, maybe if I get lucky they'll develop daily shots (would be soooo much easier).
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ReplyDeleteAllergic to the hylanerdaise part of the hyQvia infusion so can't have it
ReplyDeleteThey switched me to hizentra
Had my ifusion a week ago and I've been having horrible painful stomach cramps , diarrhea and bloating non stop and I'm extremely fatigued
Is there anything else out there to help me :(
I just saw this blog so I know my experiences on things to help Hizentra go better are too late for you Wanda but maybe can help someone else. I have been on Hizentra now for almost 1-1/2 years. I have learned a few tricks that help the side effects. I don't eat prior to infusing, I take 2 Tylenol, 2 Benadryl and a Zofran after drinking 2 bottles of either Vitamin Water or Body Armour. I found Gatorade doesn't have enough nutrients for me. In the middle of my Infusion I always eat some dry cereal. Not much but enough to keep the hunger at bay. I do the same medications that I used pre-infusion every 4-6 hours for the first 12-14 hours to help with itching, headache and nausea. By the second day I usually can hold down little amounts of food and then the third day I am good to go. I know I will have usually 4 great days after that and the day before infusion I get just a tad tired but still another good day. This disease is hard but for me learning what to expect as far as good days makes it worth it since I have a light at the end of the tunnel each week. I had no weight gain as some have asked but I am on constant Creon (a pancreatic enzyme) because the pancreas is affected by some immune issues. I used to bloat terribly and have constant stomach issues until I started Creon and went back down to my normal size within a few weeks. I did find drinking coffee the day of infusion is a huge no-no for me. The strong caffeine may be why but I am not sure. I drink ice tea all day long with no issues. I hope this helps someone and good luck everyone.
Deletehttp://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2016/ucm488301.htm
ReplyDeleteInfusion every Thursday of Hizentra. I've noticed little knots (pea size and hurt to touch,under skin )located at infusion site days and weeks later.I take 2 benedryl and 2 Tylenol every 4 hours on infusion day. Has anyone else have or had this to happen?
ReplyDeleteI have been on Hizentra almost two years now and haven't had much of a reaction thankfully. Just pancaking at the injection sites. I am now experiencing some sort of reaction. I have hundreds of little bumps under my skin on my legs. I inject in my thighs generally. Though I changed to my stomach after this reaction. Has anyone heard or experienced this??
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