IVIG Therapy

[ckblack]

Hello! First diagnosed w/ CLL in 2013. Untreated, watch and wait, Atypical CLL. Since November 2016, have had bronchitis, diverticulitis, shingles and horrible allergies. My doctor wants me to do IVIG. My family and friends support this since I have been so sick. Reading the potential side effects of this treatment are rather scary! Anyone else had this treatment? Any words of wisdom? Thanks for your help!

[AussieNeil Partner Administrator]

Compared to the higher risk of infection related hospitalisations if you have seriously low IgG counts, I'd say the risks associated with IVIG infusions are well worth taking. Bear in mind that all side effects are reported and you may not experience any. If you do experience a serious side effect, switching to an alternative supplier can often resolve it.

I had IVIG infusions every 4 weeks for nearly a year before switching to subcutaneous IgG, which I prefer because I have less side effects and it does a better job of maintaining my immunity at an acceptable level. The only reactions I've had with subcutaneous (sub-Q) IgG are some tenderness for up to a day after the infusion and feeling more tired the day of the infusion (which also happened with IVIG). I tolerated the IVIG infusions fairly well without any premeds. I experienced flushing a few times, was very dizzy once when going to the toilet due to developing low blood pressure (which quickly resolved) and needed to start a course of antibiotics after two infusions because I developed phlebitis or possibly lymphangitis and couldn't take the risk of developing neutropenic sepsis, because my neutropenia varies between severity level 3 and 4.

I've reported my subcutaneous IgG (Sub-Q) experience (including my experiences keeping my IgG safe on a 30 hour journey from Australia to Europe) here: healthunlocked.com/cllsuppo... immunoglobulins/Antibodies

And my prior IVIG experiences here: healthunlocked.com/cllsuppo...

I've included a plot of how my IgG blood serum level changed over time with IVIG an subcutaneous IgG here: healthunlocked.com/cllsuppo...

Neil

[MsChief]

I have been on IVIG since last May (I am in the U.S.) without any appreciable side effects. When I started my Immunoglobulin G was 225, and I was constantly sick with upper respiratory infections ,sore throats and sinus ear infections. None since on IVIG AND also sulfamethoxazole SS 2 pulls 3 Times a week and also Acyclovir 200mg 2 pills every day per my CLL Specialist oncologist. My IG levels are around 600 now, platelets around 110., deletion 11q, on Ibrutinib 14 months ( now 2 pills qd), age75. Best wishes. Carole

[nvp815]

I have been receiving IVIG since April 2017 for frequent respiratory infections. I went about six months without any illnesses. Although I have had several recent infections I still believe the IVIG is helping as the duration and severity of those infections have not been as bad. As far as side effects, I have an occasional headache following treatment along with tiredness for a few days. I also seem to have issues with fluid retention for about a week as well. All the above effects resolve uneventfully. Wishing you good luck if you proceed with the proposed treatment.

[gardening-girl]

I've been getting monthly IVIG infusions for two years and they have helped lower the number of respiratory infections that I've had. I still occasionally get mild sinus infections which are managed with Amoxicillin and Clavulanate.

As a prophylactic measure to avoid possible allergic reactions to the IgG infusions, which vary in composition from batch to batch, I always receive infusions of 25 mg diphenhydramine (Benadryl) and 10mg dexamethasone (Decadron) a few minutes before receiving the IgG. The Benadryl immediately makes me drowsy but wears off within 3 hours. The Decadron keeps me awake, alert and energized for the next 24 hours, adding 8 or so productive hours to my day, with no rebound effect.

Let us know what you decide and how things go for you.

[doris33]

I have had monthly IVIG infusions for over 7 years with no side effects. Treatment has helped to keep me from serious infections as it boosts the immune system. Worth a try, in my opinion.

[Ellieoak]

Yes do it. I’ve been on IVIG since 2014 and it has made a world of difference! I was in the hospital so many times I concidered myself a frequent flyer. Now I am in there 1 a year. It is the best thing I could have done. Dx 2002. 11q & 13q deleations, Treanda 2011, now on Imbruvica for 5 yrs.

[wroxham-gb]

I thought I'd wait to reply so that I could answer your query about side effects.

I had my first ivig PRIVIGEN yesterday. Now anything new my bodydoesn't like and it reacts. This happened.

Headache, fever, really bad shakes and a dreadful feeling of being cold plus my BP was sky high. Pressed the buzzer and my nurse was there in seconds. Infusion stopped, steriods , antihistamine and paracetamol all given by IV. She very, very calmly informed me that it would take about 1/2 hour to to calm down and then if I felt ok it would be restarted on a lower dose and gradually icreased up again. She had also called a doctor to check me over. Which he did.

I did complete the infusion after the restart with no further trouble.

My reason for this reply is to reassure you. It may only happen the once but the nurses are so well trained and used to responding thaI never felt in real danger.

What i am looking forward too in the near future is a lot less infections (they have been almost contstant since last October). And think the monthly visit will be well worth it.

I hope this reply really helps you to decide.

Best wishes are sent to you.

Sue

[ckblack in reply to wroxham-gb]

Thanks for letting me know of your experience! Hearing from other patients has helped me so much! I go Thursday for the infusion...I'll let you know how it goes!

[Dnewman]

I have had 6-8 infusions of IVIG since 2008. The only time I had a bad reaction was when they gave it to me too fast. They now slow it down and I don't have any problems.