I've learned so very much here in this group, from so many here, Thank you all. Although I post very little and do read and am concerned for everyone.
I want to ask what are some of your experiences with getting IVIG ? Side effects ? Reactions ?
I've been told very little by Dr and PA. Dr did say since I have had past reactions to drugs and haveany allergies, he would have me take benadryl, Tylenol and cortisone before infusion.
I've been on W&W for almost 7 years and I can't say im not concerned/anxious about starting ivig this coming Tuesday 8/8. This is the first time my immunoglobulins have been exceptionaaly low instead of borderline. Although, I am happy that I will feel more comfortable to have some immunity im still scared of reactions. I've been so fearful so long of virues, bacterias etc knowing our immune systems stink with cll.
Thanks in advance,
Lo
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Lo16
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I have been having IVIG for several years now. The only time I had a mild reaction ( slightly breathless ) was when a nurse said because I had been having for some time she would start the flow at a higher rate. Your nurses will start you at a slow rate and ramp up gradually and they should check your vitals each time.
Boredom and hunger are my main side effects so bring your phone, books and snacks.
I had some drowsiness from the benadryl, but no reaction to the IgG.I too have been on W&W for 7 years. The IVIG was my first treatment and I'm glad to have had it. Definitely bring some entertainment (books, tablet) and snacks. Might want a jacket or blanket. Treatment rooms can get cold.
I started on IVIG about 3.5 years ago. No side effects and usually took a morning or afternoon a month in the local hospital. Only problem with IVIG is that your IGG will not be constant throughout the month. High levels and thus maximum protection right after the infusion and low levels and minimum protection right before your next infusion.
My cll specialist recommended I switch to at home weekly subcutaneous infusions (SCIG) soon after. You are still getting the same immunoglobulin but roughly a quarter the dosage every week. The immunoglobulin is infused by you directly under your skin at home as opposed to by a nurse in a hospital into a vein. There are several advantages to SCIG. Your IGG levels are more or less constant because you get the immunoglobulin every week. It only takes up 60-90 minutes per week at home. The risk of infection drops significantly since you no longer have to go to the hospital. You pick when you want to do it. It’s painless, easy to learn to administer and the drug company provides you with all the disposable supplies.
I have been using SCIG for three years with virtually no issues and my IGG has been maintained in a constant 8.0 range.
If you’re interested there are a large number of very helpful posts on SCIG on this site.
I am 72, male, was diagnosed 11 years ago and on w&w. My bood parameters are just a little bit worse than yours. Have been on IVIG infusions for a little over a year. It takes about 3 hours to drip the stuff in; get them every 3 weeks. I always take a book to read. I think the experience is great since it gives me time to read up on many things I always wanted to. I always get a free lunch at the hospital. It is absolutle no big deal.
I have been getting IVIG for about five years now with very little side affects. It makes me tired for most of the day when I get the infusion. That may be from the Benedril though. I get that along with Tynenol. They used to give me steroids as well, but tried stopping that about two years ago and now feel that I don't need them. I am glad that happened because I could not sleep much for a few days after taking those. My oncologist increased the dosage and lessened the time in between last year because I kept getting infections in my lungs. Since then, I have not been sick at all.
Ah thanks Chris I forgot about the tiredness afterwards and I always book my treatment to start in the morning. Like Chris I now have been infection free for several years 🤞
Lucky you having a TV. I often drop off as well and because there are always people walking up and down or changing the rates it’s difficult to concentrate on any serious reading.
I felt very much better the day after my first IVIG infusion. I was surprised because I though it was to bolster my immune system for the winter 6 months away when infections are common. However the haematologist said he would expect an immediate improvement. The second IVIG infusion 4 weeks later did not seem to make such a difference, but by that time I had regained a lot of fitness and health and strength.
I switched from IVIG to subcutaneous IgG (SCIG) as part of a very successful program where no-one with CLL in my state switching to SCIG wanted to change back to IVIG. I've shared my experiences of both infusion methods in the links below, plus provided a reference to another person sharing their subcutaneous IgG experience.
In Australia, the standard process of doing IVIG is to do it without any premeds. They just begin with a saline infusion prior to infusing the IgG. In the year I was on 4 weekly infusions, the only problem I had was once nearly fainting due to low blood pressure when going to the toilet and tiredness most days afterwards. Also, having chronic neutropenia, I had a couple of infusions where I was concerned about post infusion infections from the needle site.
Subcutaneous infusions are far more preferable, because you avoid possible infusion reactions (which is why you can do them without a nurse present) and importantly, you save your veins for when you might need them for treatment or IV antibiotics. Vizilo 's point about the far more constant level of IgG can't be emphasised enough. I estimated my blood serum level of IgG per the attached plots, so you can see the variation. Over time, my IgG level has gradually moved up to an average of around 10 and I've found through changes on the days when I have my blood tests checking my IgG, that my blood serum level stays in a tight range of about +/1. That's because of not only the four times more frequent infusions, but because the IgG is delivered into a subcutaneous pocket, from where it gradually diffuses into your blood stream over the following week.
My experience of IVIG is having a headache for a couple of days and feeling a bit like I have a head cold. I have now been transferred to SCIG, which is very similar but I administer it myself over an hour or so every week sub cutaneously. My biggest bit of advice is to drink heaps of water, prior, during after and this sometimes helps with the headaches.
Since a 2016 CAR-T infusion, my wife has been getting a Gamunex-C IVIG infusion every two months. For pre-treatment, she gets IV Benedryl and two Tylenol tablets. It takes about 4-5 hours from start to finish. The Benedryl makes her sleepy and sometimesshe is tired for a day or two. No other side effects.
Bill ( see above is my dear husband and caregiver). I will add to his statement…I have been taking IVIG since my CAR T trial in 2016 for my aggressive follicular lymphoma. I had to take it if my IgG fell to 400 or below, as part of the trial. I have been on it ( I get the Gamunex C brand since my oncologist likes that brand and feels that there are less side effects from it) about every other month. Usually in the past, I was given IV Benedryl and that made me very sleepy. This last time since my B/ P was low ( from weight loss and dehydration due to some diarrhea problems not related to IVIG), Iwas given fluids first and no Benedryl. I did just fine and actually liked the No Benedryl as I was not sleepy or groggy. IVIG has kept me healthy and I get it because I have no Bcells due to my CART.Best wishes!
I've had several with no reactions at all. Took benadryl the first time just in case but haven't the other times. I always feel good after - the doctor says I shouldn't feel a difference but I do! I take my iPad and watch shows or movies and read. Takes about 3 hours.
I'm one of those rare folks who experienced a severe, anaphylaxis-type reaction to my first IVIG infusion. Ever since then, I've been premedicated with Benadryl, acetaminophen and a steroid 30 min prior to the infusion. The infusion is maintained at a constant low rate for the duration, so it takes several hours. My main side effects are headaches and sleepless (from the steroid) for 2-3 days afterward. For the latter, I take 25 mg of Benadryl and two 8-mg tablets of slow-release melatonin; that combo will buy me about 5 hrs of sleep if I'm lucky. The other side effect I experience from the steroid is gastroesophageal reflux (GERD). So, I avoid eating for a couple hrs before bedtime and avoid alcohol, chocolate and spicy dinners for a few days after IVIG.
I've asked about possibly switching to subcutaneous IG, but my doctor thinks it would be too risky, given my history of infusion reactions to IVIG (as well as rituximab and obinutuzumab, components of prior therapies I received for CLL). Good luck with your treatment! The odds are that you'll do absolutely fine. Don't let my "extreme" experience scare you. Just be sure that there is an emergency epinephrine kit nearby and that you know exactly where that "call" button is if you feel unwell after the infusion starts.
As a UK patient, my experience may be different from what happens in other countries. Normally I am on SCIG which, as Aussie Neil has said, is a better process from stabilising IgG levels and far more convenient. I had to have abdominal surgery so the SC route was not suitable for two months and I had IV administration instead. Obviously, IV has to be administered in a hospital/clinic setting so that's the first pain. (Happily I live only 1.5miles from our local hospital but you may be further away from yours) My weekly dose is 16g so for a monthly equivalent that is 60g. The IV preparation is at 10% rather than the 20% concentration for SC. Thus, my total infusion was 600ml or about 15% of my total blood volume. A normal cannula is inserted and flushed with saline, then the pump is started, around 25ml/hr then, if there are no adverse reactions, it is slowly increased every half-hour until it is running at about 200ml/hr. Every hour, they come round and do a full set of obs; BP/heart rate/Sats but only one finger-prick blood-glucose test. The whole process takes about 4-5 hours during which you are connected up to a drip-stand and electric pump so you are very limited in wandering about. Take plenty of reading matter because the most notable fact is it is unbelievably boring and that in itself is tiring. You may also get hungry, too. I noticed absolutely no after-effects.
the infusions are tedious more than anything. I reacted to one after a few years - take an antihistamine now an hour before. I came up in hives and was itchy.
I have been receiving IVIG infusions on a monthly basis for at least 5 years. This would be done in the hospital at the day patient infusion centre. These infusions have kept me healthy. Prior to starting them, I regularly got sick…strep throat etc. About 3 months ago I was offered the opportunity to do my own infusions at home on a weekly basis. The benefits are readily apparent. I am no longer restricted with travel plans and my IG levels remain consistent. The infusions are done subcutaneously in the abdomen area and take less than an hour start to finish. It is a terrific program and I am thankful to be part of it.
Hello Lo16, I hope your infusion goes well. Your question and the helpful responses reminded me that while I can no longer donate blood, I can certainly encourage my friends and family to do so. I had forgotten that the precious IVIG many of us need begins with healthy people donating blood. As always, we can thank both the donors and the scientists who make this important medicine possible.
So let us know how it goes for you. Sending support from my home here in Michigan, US. Carolyn
Thank you so much everyone for sharing your experiences about your IVIG infusions.... taking your time to answer me and giving me tips that will help me get through my infusion.
I can't seem not to be anxious due to the chance of reactions as I have had to so many medications in the past.
But I will think of all of you while I'm there and all the experiences you shared.
Thank you
Lo16
Ps.....I asked Dr about SCIG. He said he doesn't do it and knows of no one in our region that does. If I must continue these infusions for a long time, I will be going back to Northwestern in Chicago to the CLL Specialist to see if I can do SCIG through her.
I think you will be fine. Not everyone has infusion reactions, although they are common, and nurses know what to do. IVIG infusions have been around for decades upon decades, they were doing them when I first started working hospitals in the 1980's Fear of the unknown is common for most everyone, I think. FWIW I know one *doctor* who prefers to get his IVIG by infusion. The SC form is also a moderately time consuming process, it's not a simple little syringe injection, it's still an infusion. He did not want to deal with the procedure, he likes just going into the clinic then leaving, it's very close to his place. But if you aren't near a clinic, or dislike going in, you can investigate the SC home thing. The Northwestern staff will probably be experienced at getting insurance approval, etc. You'll get training on how to set up, how to do it, etc. and I think at least the first one or 2 they like you to do in the clinic, so if any questions or problems pop up someone is right there. Check out how much "home health care" coverage your insurance offers, you may be able to have a nurse come to your home at least the first few SC infusions, instead of being in clinic.
I have never received IVIG but I did enjoy making the money to infuse it lol. We would instruct the patient to be very well hydrated 1-2 days before the infusion, have a good breakfast prior to, with food available to eat during the process.
When the patient wasn’t well hydrated then it would be harder to find a vein or for the vein to last. The material is thick & sometimes my lines would easily infiltrate. Also the vitals must be monitored closely, so you start low & increase based on the patient’s tolerance. I have had bad reactions like nausea, vomiting to low blood pressure to high blood pressure. I don’t remember any rash or skin problems. Even one heavy smoker patient would have awful coughing spells & I would have to help him get up the phelgm that was choking him. Hydration & food really made the difference!!!
The patient would be groggy that day with the tylenol & benedryl but feel amazing the next day or the day after. Like a real boost in energy. I never gave steroids just Tylenol & Benedryl. Patients would sleep through it or we’d watch movies & order take out. It was a good time. I hope you feel all the pluses with it🙌🏾
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Fear of the unknown is common for most everyone, I think. FWIW I know one *doctor* who prefers to get his IVIG by infusion. The SC form is also a moderately time consuming process, it's not a simple little syringe injection, it's still an infusion. He did not want to deal with the procedure, he likes just going into the clinic then leaving, it's very close to his place. But if you aren't near a clinic, or dislike going in, you can investigate the SC home thing. The Northwestern staff will probably be experienced at getting insurance approval, etc. You'll get training on how to set up, how to do it, etc. and I think at least the first one or 2 they like you to do in the clinic, so if any questions or problems pop up someone is right there. Check out how much "home health care" coverage your insurance offers, you may be able to have a nurse come to your home at least the first few SC infusions, instead of being in clinic. 
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