CLL Support Association
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IVIG infusions

Hello there,

After six years of terrible infections, including shingles, strep throat, several pneumonia trips to the hospital, including intubation... Breathing machine, forced oxegen, our local disease control got involved to see if there was a way to keep me lot of the hospital.

A new oncologist suggested disease control was right and prescribed IVIG treatments, of which I get 25 grams every 30 days. Odd enough I sleep the first week, and soundly after AN IVIG. I am also going to physical therapy to try and get back my stamina from 6 years in bed more or less. I have not been sick since I started these treatments September 24th. So 2 treatments under my belt. My question is, do IVIG UP energy levels at all, besides not being sick all of the time? I've noticed my skin and body overall have less pain, but I guess I thought I might feel like the energy bunny. When does that happen? I'm guessing after a lot of work. Also, if I am in remission does my overall immune system still get lower each year? Thank you. Lastly, hemotologist told me the infusion would take six hours, but the infusion center runs me through in less than 2 hours. Could this contribute to negative affects, as in extreme tiredness, the week after the IVIG treatment?

THANK YOU MY DEAR FAMILY!!!

Kimsome

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You should enquire about the self administered subcutaneous IG... funnily called SCIG.

Its new from several makers and is being used more in CLL where the side effects are less...

They are self-administered in the tummy with hair like needles and patients report this weekly injection, which takes 30 minutes or so... causes the Ig in the blood to stay more constant.. less peaks and valleys...

A number of patients here are on it, I'm sure they can offer more...

~chris

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Great idea! I'll ask this next visit.

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Hi there...I've had three lots now. They take about 4 hours. The first one knocked me off my feet a bit, the second one not so much, and the third, I felt a bit ropey the day after but brilliant since.

It sounds like you've been through so much and it'll take time to get your strength up...which I'm sure you will.

Best wishes,

Nic

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Thank you Nic!!!

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Hi kimsome

Sorry to hear you have had such a bad time with illness.

I had Immuniglobin infusions last winter and may be about to start them again this winter. I have not (touch wood) had infections since the infusions and had no problems receiving them. I was told I might get an energy boost but as I don't have fatigue did not see any difference there. I hope this helps in some way.

Good luck with your recovery.

Ann

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How are you doing now? Thank you for your response.

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Hi I am doing fine now thank you apart from a tickly cough which is manageable but irritating. Still no infection since the start of treatment with rituximab and ibrutinib on Flair trial. I hope things are going well for you too.

Ann

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The length of iVig infusion depends on your reaction. Mine take about 4+ hours because I don't tolerate it well. If you do, they just run it at a normal rate. Physical therapy is a great idea. I am a frequent flyer because I have had some pretty long hospital stays. Wish more people were aware of this resource. Rehab following (during) cancer treatments is the quickest way to improve your daily life.

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Following a March 2016 CAR-T infusion my (aggressive follicular lymphoma) wife gets an IVIG infusion when her IgG falls below 400. So far this has been about every 4 months. After the IVIG infusion she feels tired for 3-7 days; no other side effects and (unfortunately) no increased energy. Oh, she has been in complete remission for19 months.

I wish you well on your CLL journey

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I've posted about my IVIG and SCIG experiences here:

healthunlocked.com/cllsuppo...

The SCIG takes me about 2 hours, but given it's weekly, works out at more time overall than IVIG, (about 5 hours for me) but you do have more freedom and less side effects, plus a more even immune system response :)

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Has anyone noticed that the IVIG does not help? My CLL Specialist said there may be evidence it doesn't always help. I had one dose and ended up with liver problems for about 6 weeks. They are not sure if I should get it again.

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I was given IVIG during cold season at first. After I began contracting warm weather infections (staph, shingles, hand/mouth disease, etc) IVIG has been year round. I don't have any physical response negative or positive but the infections became infrequent events.

Best wishes!

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I have been having IVIG infusions for 10 yrs monthly. It has kept infections down to about 3 a year. My immunologist since 2015 has increased my dose from 25 to 30, 35 and now 40mg this last year I have not had an infection since March. All doctors very pleased. My treatments take 7 1/2 hrs as run slow due to headaches it causes. at 25 mg they took 5 hrs.

I go prepared with a blanket, small pillow, kindle, magazines, they provide juice, coffee, lunch

etc. My nurses at Father McGivney center Yale hospital are wonderful.... I call it my recharge day as it does give me more energy for about 3 wks ... My fatigue is much better since increase this year... I'm still stage 0 since 2007..

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As I was told before I started IVIG treatments last year, they are not given to make you feel better, or to give you more energy, etc; they are given to bolster your immunity to keep you from catching everything that comes along. Obviously if you are not sick with something, you will feel better, and you will eventually get your stamina back. Physical therapy along with the IVIG should do the trick. But we need to remember it's purpose is to keep us from getting infections. I am not trying to discourage you, if you do feel better, that is great; but I also don't want someone to be discouraged if they don't feel more energized after the treatments.

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Kimsome: So glad you are having positive results from your IVIG infusions! As far as the duration, that is a highly individual thing. The first time always takes longer as they want to carefully monitor your reactions, and watch out for any allergic reactions. Once they know how well you tolerate the infusion they will run the IV faster and you'll be finished quicker. Hope you continue to have great luck!

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I love my CLL Support group family. Thank you all so much for you kind words and wisdom. May GOD richly bless you. And keep those comments coming. I love hearing all of your stories. Of course I do.❤ So add on any time when you think there is something else or something new to contribute. THANK YOU

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Hi Kinsome, I've been having IVIG infusions for about 18 months or so now,20g every 3 weeks & it takes about 3 hours for me. A tip from Aussie Neil (thanks vm) is to drink plenty of water before , during & after the transfusion, really helps me tolerate it much better. I too suffer fatigue, but rather counter intuitively I find I feel better if I do something rather than rest - not for everyone, I suspect, but may be worth a try - good luck on your journey

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Hi Kinsome...I have had two ivig infusions and I have one more scheduled in 3 weeks. My iGg was 586 and I couldn't shake a sinus/bronchitis infection which started Oct 1st.....it is now Dec 25th. and even though I'm a little better I'm not there yet. I also have bouts of fatigue. I was diagnosed with CLL in 2007 and so far still watch and wait. I'm beginning to think I'm never going to get over this respiratory infection...The cough is so bad that at times I feel like my eyeballs are going to fall out and/or I'm going to collapse a lung

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