My husband has been on Calquence since April 2021 and responding well. Unfortunately, between that and the CLL it's managing, his compromised immune system has lately become a welcome harbor for infection - he was in hospital for several weeks after a staph infection was found in his lungs and on his adrenal gland (causing some internal hemorrhaging). After 8+ weeks on antibiotics, the staph was much improved - but then he developed C-diff and landed back in the hospital for a few nights.
In 2021, he got IVIG after a bout with immunthrombocytopenia, and it was event-free and successful. During recent hospital stay for the staph infection, an IVIG was started. However, about an hour into the infusion he had a fairly strong reaction (rigors) and it had to be stopped. No one knows why this happened, given he'd had it with success before...but oncologist doesn't feel it means he can't ever have one again.
Fast forward to today, and we are discussing with his onc about if it makes sense to start having IVIG prophylactically. His blood levels indicate he is a candidate for it. His onc said:" Guidelines for managing hypogammaglobulinemia are unclear; basically, using them prophylactically can decrease rates of bacterial infection, but do not alter overall outcomes." (I am reading that as saying it can decrease chances for bacterial infection that could cause hospitalization, but won't change things if he does contract an infection.) And then said that if my husband needs to be hospitalized again in future for a bacterial infection, at that point we should commit to IVIG.
For me, having something that could decrease my husband's chances of landing back in hospital makes sense. Has anyone else been in this situation, and what did you do? I'd be interested to hear how prophylactic IVIG has been for people, and how they arrived at the decision to do so. Also interested if anyone has further info to share on doing something like this - onc is not a hem onc specialist, so maybe there's more to know.
Thank you!
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OaktownA
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Started monthly IVIG after I ended up in the hospital almost 4 years ago with a mild bacterial infection that became life threatening vey quickly. The IVIG was converted to weekly at home subcutaneous infusions - same immunoglobulin but one quarter the dose infused under the skin as opposed to directly into a vein.
Virtually no infections in the last 4 years and while it’s only anecdotal, my bout of COVID, earlier this year was very mild. My cll specialist suspects that the immunoglobulin might have provided that extra protection.
i've been doing this at different intervals for at least 5 years now. Since last winter they have me on once a month because I developed AIHA. Twice in those 5 years i have had a reaction, both time it happened after they switched brands of IVIG. When they switched me back to the brand I was getting before no more reaction. I now always make sure they give me Prevegin. I've seen other cases where switching brands have caused reactions. Could be that's what happened to your husband. The IVIG seems to help prevent infections.
My CLL specialist started me on 4 weekly IVIG infusions in 2016 after a couple of hospital admissions for IV antibiotics. I switched to weekly subcutaneous IgG after a year, which you do in your home without supervision after a few training sessions. Chronic neutropenia has been the main complication of my CLL journey and my specialist subsequently started me on regular self administered G-CSF shots after another hospital stay for IV antibiotics in 2018 to boost my neutrophil count. I've had only one hospital admission since then for IV antibiotics, which happened soon after starting treatment for my CLL in 2019. Treatment boosted my neutrophil production sufficiently for me to no longer need G-CSF shots, but my specialist has kept me on subcutaneous IgG as my IgA and IgM are very low - hence the justification for the IgG infusions to reduce my risk of serious infections. I've had no hospital stays in nearly 4 years - a very welcome improvement from averaging them roughly every year.
I have been having ivig for nearly 7 years. I am going today. I am monitored and the speed the immunoglobulin is infused at is adjusted periodically. Your husband will have the infusion slowly and checks will be made regularly. I have never had a reaction.I havent even had a cold since having ivig. Its something I wouldnt hesitate to accept. I havent caught covid but was told that it would now contain antibodies. We wont know if it gives protection but hopefully it helps. Anne uk
I have started IVIG monthly infusions due to severe recurrent sinus infections. No matter how I tried to avoid risky situations or masked up, I would get a little something that would turn for the worse. For me, I am feeling better and have a better quality of life.
What are your recent husband's IgA, IgG, and IgM readings? Your insurance may not cover IVIG unless the readings are sufficiently low. In the US, the NIH criteria for my wife was IgG 400.
Hi OaktownA, For me I regard my regular IVIG infusion’s as a life saver. It all began as a consequence of 15 hospital admissions with repeated Pneumonia and 4 sepsis episodes.
I am now in my 10th year of 3 weekly infusions and have been largely free of any serious infections, although I am at this moment suffering with an outbreak of shingles following on from a recent spinal nerve denervation procedure.
Also I should add that I have been on Ibrutinib for 11 years, recently reduced to 140mg due to ongoing side effects.
I have been through much the same as the others on this post. I had been on monthly IVIG for about 12 years until my hematologist decreased it to every 8 weeks a year ago. This seems to keep my IgG at acceptable levels. You didn’t mention what premeds were given to prevent side effects during IVIG. I’m given Benadryl and Tylenol before IVIG. Another thing to pay attention to is how fast the IV rate is increased. I don’t pay enough attention myself but I know they bump it up every half hour until it gets to to the maximum rate. Please ask them about increasing the rate more slowly than whatever it was when the rigors happened.
After a year of monthly IVIG infusions (all "unremarkable") I had the same allergic reaction you describe during the next infusion--fever and rigors. Yikes. Turns out that the hospital's pharmacy had changed BRANDS of IVIG solution. Now they aggressively pre-medicate me with hydrocortisone and benedryl and the allergic reaction has not happened again. You should probably ASK about brand change, as the hospital might not volunteer to go public about that. Oh--and I have not had an infection in my 2 1/2 years on IVIG infusions. Hooray!
I have been getting IVIG every 28 days for 7 years. The only time I had a reaction was when I didn't take the premed (Benadryl). So, I do make sure to do that. In those 7 years, I have had a few infections, but not many. Covid wasn't bad for me this January. I did get pneumonia, but it wasn't a hospital stay for me, just antibiotic. If you can figure out how not to have a reaction, I would do IVIG for sure
I take IVIG now too, but like you was unsure about it. As I have learned and as everyone has said it's worth it. Your husband has been getting repeat infections (one criteria) and if his IGG is under 400-500 that is the other criteria. I think I heard in the US the criteria may now be under 600. At least with Medicare.
I get tested monthly now and if I am under 500 I will get it. I have taken it less times during the summer as I am not as exposed to infection. But I took it this month to ramp up for the fall and I have very small grandchildren. We know what vectors they are!!
I'm glad you posted this. I have never had a reaction but will now check to make sure they don't switch me up between brands.
I got a lot out of this candid discussion, so thanks for bringing it up OaktownA. So sorry about that bad reaction, it must of been so scary. I get them rigor symptoms when off my BTKI Therapy for 4 days 🤷🏽♀️
I found it so interesting because I do not want IVIG. I actually administered it as a Home Infusion RN. I experienced very few bad reactions. I would instruct my patients to hydrate well the day before, to have a good breakfast before we start & lunch during the treatment. To take the Infusion out of the refrigerator that night & let it thaw out over 8 hours. They would take the Tylenol 650-1000mg & Benedryl 25-50mg as soon as the IV was inserted & patent. Then I’d set up the infusion, prime the line & set the rate on the pump or the flow rate of the gravity line.
I’d do all my vitals, every 15min the first hour, 30min checks for an hour & then hourly until finished. I only advanced the rate as tolerated. Actually most patients would want it quick as possible. They really tolerated it well. The most common side effect was nausea & vomiting but I only seen vomiting 2 times in 6yrs. My regular guy would get nauseous so that’s why he had to be well hydrated & have food in his stomach.
My major grip is that it takes so many donors for 1 infusion. Also its a blood product & that goes against my SDA Health Message. I was a bad Asthmatic who cardiac arrested 3X before the age of 10. Antibiotics & Steroids have preserved my life for 58yrs & that is what I know & trust. What I am hearing is what is ‘frequent’ infection? I may have 2 infections during the year before stage 4 CLL & Zanubrutinib.
I am monitoring myself on the BTKI & I notice that all 4 common side effects I suffer with initially but then it mellows out. My susceptibility to infection increased when I started the therapy in April. I also had severe bone pain. Later on my WBC dropped as desired but Platelets would drop too & then later rebound. I don’t see any signs or symptoms of bleeding. Bottomline for me is that I live alone, stay masked up everywhere, stay out of crowds & I don’t want any vaccinations or IVIG. Its not in stone but right now, that’s where I am.
I think your husband meets the criteria & his IVIG just needs to be adjusted. Checking the brand & even increasing the pre medication if deemed necessary. I wish you both well, so many twist & turns… 🤦🏽♀️ #GODSPEED🙏🏾
When you said, "My major grip is that it takes so many donors for 1 infusion.", are you perhaps confusing the number of donors who contribute to one batch of IgG product (over 1,000 donors), with the number of donors needed to make up one infusion, which is way, way less?
People can donate blood or plasma as frequently as recipients require them - about every 4 weeks. An immunity boosting IVIG infusion is typically 25 to 40 grams every 4 weeks, depending on patient weight. Blood donors donate about 8% of their blood volume (about a gram of IgG) and plasma donors about twice that. So one IVIG recipient only needs about 30 to 40 plasma donors to give them back their life.
Importantly, the reason for including over 1,000 donors in the production of a batch of IgG for IV or subcutaneous delivery, is to provide a good cross section of antibodies to protect against all the different infections going around. A batch of IgG can provide around 30 infusions to boost immunity, with less required to combat autoimmune diseases, as a higher quantity of IgG is needed.
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