Not “sick” enough for an IVIG treatment... - CLL Support

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Not “sick” enough for an IVIG treatment...

teb0513 profile image

Hello Friends,

I haven’t posted in quite a while. I have had ongoing sinus and kidney infections since October 2018. I’m limited with types of antibiotics because of various allergic reactions. I had an IVIG treatment a few years ago (different oncologist) and although I had a significant reaction, once I got past it, those were the best 6 weeks of my life (post CLL diagnosis).

Should I seek out another oncologist for a second opinion?

I’m on Bactrim now to try it, yet again but I look like one big hive and am stopping it - if I could tear my skin off I would.

This community has always been such a wonder resource. I’m at my wits end at this point!

Scratching my skin raw in North Carolina...

Teb0513

14 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

I think a CLL specialist opinion might be a good idea... they seem to know which levers to pull to get insurance companies to cover support treatments like IVIG.

Certainly worth a try...

~chris 🇨🇦

teb0513 profile image
teb0513 in reply to Cllcanada

Thanks, Chris.

I had a sinus infection for three months last winter and the worst issue I had pre-treatment was a nasty rash that itched like crazy, so I can relate. That is just awful! I'm with Chris on trying to get an appointment with a specialist. There are many of us that travel to see one, and it's worth it. Hang in there!

Ask your oncologist to check your immunoglobulins levels.

teb0513 profile image
teb0513 in reply to wmay13241

My immunoglobulin levels are low, but according to my oncologist they are not low enough in her opinion. Thanks for your reply.

wmay13241 profile image
wmay13241 in reply to teb0513

Per trial protocol, as a result of a March 2016 NIH clinical trial CAR-T infusion my wife gets an IVIG infusion when her IgG falls below 400.

I sent you a PM.

Have your IgG level checked and hopefully work with a specialist who understands how IVIG can make life livable. Even my first oncologist, who knew nothing about CLL, knew enough to get me on IVIG infusions. That was 17 years ago, and I haven't had a serious illness since. Before IVIG. I lived from infection to infection which no antibiotics helped!

I have been on IVIG since beginning chemo in 2015 due to repeated infections. While I was being treated for these infections I was tried on a myriad of antibiotics, each one discontinued due to "allergic" reactions. (Mouth sores, severe itching, hives, swelling) I was finally sent to see an allergist because my Oncologist was concerned that there would not be an antibiotic that I could tolerate. It turns out that after testing for all those "suspect" antibiotics, I was NOT allergic to any. I had "response reactions" (not true allergies) and recommended that I take Tagamet before any antibiotic regimen. I am not telling you to do this on your own ( dosing is specific), this is what was found to work for me.

Thanks!

So sorry to say this, but i am so pleased to hear of someone else suffering with hives, i thought it was just me.

5 weeks if the darn things, keeping me awake in the early hours with how hot, itchy and uncomfortable they are. Anti virals, antibiotics, anti histamine and even steroids have failed to touch them. No idea what has caused them but the hospital have now decided they think it is my body reacting to my high WBC.

One day i am covered the next i get 2, the next day i have a few then i am covered again. They vary in size and shape from something that looks like a heat lump to something that looks like a blister to something that looks like a whip mark right across my body to something covering my whole torso in one massive red splodge.

I understand the " scratch my skin off" and believe me i have come close.

Hoping that treatment will alleviate them......fingers crossed.

I hope you get sorted soon.

Anne

Teb0513 -

One of your previous posts indicated a long history of serious infections plus celiac disease. My case is not so severe. Nevertheless, I hope it provides some insight into IVIG issues.

My IgG was last at 507 mg/dL about this time last year, and steadily decreasing year to year. It was 570 6 months earlier. I was last in the normal range, above about 700, in 2011.

I have pollen allergies and see a board certified allergist immunologist. She did Ig tests - titres - before and after the pneumovax23 vaccine. I've had such titres before. Even though I'm in watch and wait, my B-cells only made significant antibodies to 4 of the 23 serotypes of pneumococcal pneumonia, which was lower than previous titres. I had repeated, extended sinus infections with ear blockage lasting several months at a time. I also had digestive infections resulting in diarrhea. On that documented basis, insurance approved SCIG (sub-cutaneous immunoglobulin) infusions. SCIG is often preferred over IVIG now by patients and immunologists, because of fewer complications and greater convenience.

In our case, we CLL patients are sometimes caught between specialties and medical board standards. The standard of 400 mg/dL cited in much of the CLL and hematology literature may be oversimplified. The low end normal IgG is set around 690 mg/dL. There are patients with levels lower than 400 who don't experience infections, and those above who do. I don't think that the 400 level was experimentally obtained. It was, rather, and arbitrarily low level assigned in some earlier studies in the 1980s and 90s. It became a reference to compare against in replicating results, but those results do vary. i.e. some people with levels above 400 have more trouble, and some with less than 400 have less. In addition, the levels vary between instruments and day to day and month to month. The basic Ig level test is inexpensive.

In addition, there are multiple kinds of immunoglobulins. IgM is most important for early infections, but there is no commercial product available that supplies it. Perhaps it causes more allergic reactions. But the IgM level may be as important or more important than IgG level. IgA is especially important to us, since it is the type in mucous membranes in the respiratory, genito-urinary, and digestive systems. Some IgG products do provide IgA, but I think it's more of a side effect of processing, and may not functionally change things.

A key factor in the analysis for CLL patients and other secondary immune deficiency patients is cost vs. benefit. This same analysis is apparently not done as much primary immune deficiency, even though there are multiple types of primary immune deficiency as well, and they are often diagnosed at very young ages.

Another factor for immunoglobulin therapy analysis is supply. Ig products are produced from donated blood plasma. Should a patient suffering from infections that are not effectively treated with antibiotics have to bear the weight of such analyses?

My general advice is:

- Get IgG, IgA, and IgM levels checked annually.

- When you get infected, ask for cultures to be done to identify the bacteria or fungu. You may find that when one antibiotic kills one type of bug, a new one takes its place

- Before you get your regular (every 5 years) pneumococcal vaccine, ask for titres to be done. You may need to see an immunologist for this.

- Include an immunologist on your medical team, and make sure they share results with your oncologist. Ideally, they should talk to each other, but I suspect that almost never happens.

- For infections longer than a few months, consider seeing an infectious disease specialist if you can.

- Document every infection in a personal log book. See a doctor when infected.

=seymour=

references:

cvi.asm.org/content/22/2/148

Use and Clinical Interpretation of Pneumococcal Antibody Measurements in the Evaluation of Humoral Immune Function

aaaai.org/Aaaai/media/Media...

Work Group Report of the American Academy of Allergy, Asthma & Immunology - Update on the use of immunoglobulin in human disease: A review of evidence

cdc.gov/vaccines/vpd/pneumo...

Pneumococcal Vaccine Timing for Adults

BellaBee10 profile image
BellaBee10 in reply to SeymourB

Thank you for this. Really useful info.

Thank you for this post! This gives me some additional reference points that I can look into.

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