12 months ago I was on an Ibrutinib clinical trial for my CLL. Ibrutinib worked great for me for years. I found out I needed a triple bypass due to 95% LAD artery blockage. Not good! A stent wasn’t an option in my case due to necessity for blood thinners. Can’t do blood thinners, aspirin and Irbutinib at the same time. I stopped Ibrutinib 11 months ago and had the bypass. Due to a hospital acquiring MRSA (staph infection), I required three additional surgeries to remove the infection. My sternum is still separated and will be forever. My heart surgeon left metal wires in my chest so I spend the rest of my life on daily oral antibiotics
So here I am, no BTK for 10 months and my CLL appears to be OK - so far. My CLL doctor wants me to stay off Ibrutinib (am I in remission?) and begin IVIG treatment due to low(er) test levels. IgA = 105.9 (OK): IgG = 548 (low, 650 is normal): IgM = 39.3 (low, 50 is normal).. Other than hospital acquired MRSA, I’ve had no colds, pneumonia, flu, respiratory or sinus infections for the past 3 or 4 years. I know my case is exceptional, but what criteria did your doctors use to start you on IVIG? Does Medicare pay for IVIG 100%? Most importantly, do you feel better and have more energy? Do you take IVIG at home or at a hospital? How often does everyone go for treatment? I’m kind of a “if it ain’t broke, don’t fix it” type of guy. Thanks so much!
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misterbee
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Hi misterbee, your story resonated with me because my husband had a triple heart by-pass 16 days ago but thankfully he hasn’t experienced the dreadful MRSA which plagued your recuperation. What awful bad luck to need further surgeries ☹️. Sounds like you’ve suffered wound dehiscence but I was puzzled by your comment that the surgeon left ‘metal wires’ in your chest because my understanding is that is how all these procedures are in that it’s titanium wires which ultimately hold the sternum together for the foreseeable. They’ll always be wires left in the chest after this very intrusive procedure.
You sound to be in a good position CLL wise in that the Ibrutinib therapy which was fortunately prior to your bi-pass had affected a clinical stability. Perhaps not a full remission but certainly a settled situation which is great.
In terms of the IVIG, I received it monthly in hospital for a year when I started I&V treatment for my CLL. I’d suffered serious respiratory infections and my IgG was just nudging 4. They really only consider the IgG levels because the other immunoglobulins cannot be supplemented. The criteria in the U.K. is very strict now and I’m no longer offered IVIG (my IgG is about 4.5) but fortunately, like you, I haven’t had too many severe infections of late. It is also possible to have sub cutaneous IVIG which you’re trained to do at home but being from the U.K., I’m afraid I can’t comment on funding or insurance eligibility.
I suspect it’s the added risk from your post heart surgery history which is making your doctor recommend IVIG. A normal low IgG starts at 6 in most places so you are slightly deficient but not enough to qualify for IVIG in the U.K. especially with no recent history of serious infections. I think they’re keen to keep your immunity as buoyant as possible given the added complications and there’s no doubt IVIG does that to some extent. It is a bit of a bind to attend the day unit once a month for about 3 hrs but the infusions certainly caused me no side effects apart from permanently bruised arms as my veins buckled under the constant puncturing!
Sub-cut at home is much easier and less intrusive and AussieNeil is the person to advise you on this procedure as he receives his immunoglobulin treatment this way.
Thank you so much for your response. The wires I was referring to are called pacer wires. They're attached to your heart for a little while (days) after CABG so the doctors can zap your heart if need be. From what I understand the pacer wires (not sternum wires) can either be cut at the skin level OR removed completely. Mine were cut at the skin level and can no longer be removed. When MSRA is present it "hides" in the pacer wires and perhaps the sternum wires) and may reappear if not kept dormant by daily antibiotics. This is what I am facing right now. You might check to see if the left the pacer wires in or removed them. For some people who don't develop an infection it doesn't matter. As you know, I haven't had any non-hospital acquired infections so far - so I'm questioning whether I need IVIG at this time? I did read that CABG lowers IVIG, but so does CLL. I might just wait it our and ask for periodic IVIG tests to see what's really going on. How did you feel after getting IVIG. Were your energy levels improved?
I didn’t have a single infection whilst on IVIG and my energy levels did improve. I seem to recall you’re also diabetic (as am I) and it does up the ante on infection risk because CLL and diabetes don’t play nicely together. At the moment my energy levels are very poor even though I’m uMRD. I do believe my body is constantly fighting sub-clinical infections.
Husband’s pacer wires were removed a few days after the procedure.
Stay well and trust your own instincts on this but I’m sure you’re aware your infection risks are intensified.
Newdawn has already given you an excellent reply regarding the why of immunoglobulin infusions, to which I can reference my posts about how it is done and the side effects I've experienced. There are competing formulations of IgG for infusion*, so in the rare event that you have a concerning reaction, swapping to another supplier seems to prevent a further occurrence. The frequency of IVIG infusions is pretty well every 4 weeks in the UK and Australia, but seems to vary from 4 weekly to up to months apart in the USA for the standard indication of IgG being lower than 4 (can be lower than 5 in the USA) and having severe infections.
Given you might like to avoid hospital visits for IVIG, subcutaneous IgG might be a more attractive option for you, because with some professional training, you can do this at home weekly, whenever during the day when it is convenient. It also provides a much more even level of protection from infection than IVIG. Unfortunately, despite the reduced overhead cost, with no need to pay for infusion nurses to provide the infusions and monitor you for infusion reactions, or the use of an infusion chair, monitoring equipment etc., depending on your health insurance, the cost in the USA can be more than for IVIG!
*A batch of IgG is produced from blood or plasma donations from at least 1,000 blood donors. That provides a good mix of antibodies/immunoglobulins from the thousands of bugs around the place. The IgG is extracted, viruses, etc, filtered out and IgA is removed to reduce the likelihood of an allergic reaction. (I've never heard of this happening with CLL, where we could do with more IgA to reduce our risk of infections in our mucosal linings.) The resulting purified product is produced in different concentrations for IVIG (6 to 10 percent) and 20 percent for subcutaneous IgG.
High risk cll diagnosed in 2015. Ibrutrinib has my blood counts normal. Ivig every 6 weeks in hospital if igg is lower than 550. My Medicare plus united Healthcare plan F covers total cost. I have hardly had a cold for past 7 years. Feel fantastic. Not tired. 74 years old and walk 4 miles most days. Covid hit me hard, but I survived! Ivig does seem to give me a boost in energy. Stay well, folks. Life is good!
My situation similar except heart issues are not involved.
I have been having IVIG every 4 weeks since 2019 . This was suspended for a while during covid, Despite having these infusions every 4 weeks and pentamedine inhaler I was still contracting chest infections and pneumonia with hospital stays. The constant coughing has damaged my lungs and HRCT scan confirmed Brochiecstasis . A respiratory consultant together with my haematologist prescribed a long term antibiotic Azithromycin.
I have been on this antibiotic since September last year
This has been a revelation my appetite returned and infections have stopped and I have regained weight. Was wondering if you are on the same long term antibiotic.
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