Immunoglobulin infusion

[Corin850]

I'm going to have one of these soon. How will I be the next morning?

[Foggymind]

Hi Corin850,

I have had many of these IVIG infusions and have had no ill effects at all. There are side effects to this treatment but most are minor like increased body temperature, diarrhea, nausea, abdominal pain, vomiting, muscle pain, dizziness, and headaches. You will be closely monitored during treatment with constant blood pressure, Sats, and temperature checks being done. Let the nurse know immediately if you feel unwell. I used to have many infections before I had this treatment but am now completely infection free (touch wood!). So in short, you should be fine the morning after treatment. Best wishes and good Luck.

Kevin - Essex, UK

[AussieNeil Administrator]

Further to Kevin's excellent reply, other than sometimes feeling more tired the next day or so, I too have very little in the way of side effects. Sometimes I feel a bit flushed in the face and my temperature rises slightly during the infusion, but that's over by the end of the infusion and I'm able to continue on as usual for the rest of the day. Further to the Related Posts to the right (or bottom of the screen if you are reading on a tablet/smartphone), I've written about my experiences here: healthunlocked.com/cllsuppo...

Neil

[Kimsome in reply to AussieNeil]

Neil, how are you feeling? I have my first IVIG INFUSION in two days in Portland, Oregon. I had the FCR six years ago

Cll/SLL Stage 4, Rai II. My FCR was stopped by the 5th month because I was so very toxic.

Very aggressive and never recovered. Always had flu like symptoms, so bad to keep me in bed. Then singles, pneumonia, skin cancer (melanomas) in 5 different places. But the real blow was a a bad case of pneumonia. It kept me in the hospital the week before Christmas. Santa did a lot of ordering on Amazon prime time, ordering my kids presents just in time.

Then one night in May I went to bed with a sore throat and woke up on a ventilator in ICU. My husband woke you at 5:00 a'm and thought I sounded like I was drowning. So I made an awesome come back. Then went to my check up and my my oxegen level was at 70, I walked to the hospital kept for a night given another antibiotic and went home. Finished antibiotic then

In a few days my husband got up and found me acting very strange... He drove me to our local hospital, my oxegen level was then at 50. Thankfully our providence disease control doctor came to find out what was going on. He said I needed to try IVIG, but my oncologist said my IgG levels weren't low enough. So our disease control Dr. gave me the name of a great hemotologist, lymphoma, oncologist right here in Portland. He did a bone marrow biopsy. Seemed normal enough. Very low on iron.

BUT, this Dr. Said, let's give IVIG an try, let's just see if that will help. I was shocked and amazed. I don't know why, if I am in remission I feel so rotten all of the time. My last visit to my last oncologist said a low level of CLL was back in my blood, this new oncologist found NONE. God must be listening to the prayers of my friends, husband and my children.

Anyway, thank all of you that suggested IVIG. I don't know why I am so sick. But heres to IVIG working to ward off bacterial infections in the hospital and life and death hanging over my head at 51. Have you every heard of someone in remission so sick, one illness after another?

[AussieNeil Administrator in reply to Kimsome]

I'm feeling fine 4 weeks into my overseas trip - and just about to sit down to my weekly subcutaneous IgG session. No medical appointments, let alone hospital admissions and only a couple of occasions where I successfully fought off respiratory infections. So I'm pleased to hear that you have been given the opportunity to have IVIG and hope that it changes your life as it has mine.

I note that both in this and your separate post, you've mentioned where you are having your infusions and both posts are not locked. You might want to remove the location references via the 'v' 'Edit' option under your posts.

Neil

[kady1270]

My husband had no side effects other than he was tired for the rest of the day after the infusion. They really helped him with infections.

[ccm47]

Probably just the same as he did before it.

Here in France, each time I have IVIG, I am weighed, my SATs are noted and my blood taken. Then a saline solution is infused before the IVIG and a short solution run through me afterwards. No post infusion SATs are taken, and I am free to leave as soon as I want after I have been disconnected. Clearly it is regarded as a routine,safe treatment even if it is rarely given.

Once out of the hospital I go and find my car and continue my life.

[bkoffman CLL CURE Hero]

Unless you have an allergic reaction which is rare, you should do fine. I do feel more tired after my infusions (had many), but am fine the next day. Stay strong, Brian, volunteer medical director CLLSociety.org

[JWalker]

My first time, I had a slight hit fever a few hours after treatment which Tylenol took care of. My next infusion, I took Tylenol at the start of the infusion and then again four hours later and had no fever. With subsequent infusions I have not taken anything and have absolutely no side affects. I am scheduled for one this morning as a matter of fact.

[BeckyLUSA]

Just had my 4th one yesterday. I have had no ill effects to speak of. I am tired the rest of the day and a little bit more fatigued the day after, but nothing serious. They do work though! No antibiotics since August, and they are starting to taper them for me. Don't have next infusion until mid February. Before the actual infusion, they give me Tylenol orally and a dose of benedryl through the IV. The benedryl is supposed to ward off some reactions, Really a piece of cake, It also can make you realize how fortunate you are, as in my location, I am in the same room with people that are much sicker, receiving chemo. I know my time could come, but I'm not there yet! One thing to remember though, this doesn't do anything for the CLL itself, just helps what the CLL does to your immune system.

BeckyL

[wmay13241]

My wife has had three IVIG infusions with no side effects.

[ucallihaul]

I have been receiving IVIG (privigen) for over 4 years and never had any side effects, and actually in the weeks that followed my treatments my energy levels picked up. You are right about not having colds or fevers which I have not had for 4 years. Even when I had FCR for the 6 months I was told to continue receiving the IVIG

[mrsjsmith]

Hello, I have had 3 with no side effects. The only thing I suffered from was hunger and boredom ! Mine took much longer than I was expecting and because I was in a busy London hospital I was not offered any food. So the second one I had I went armed with coffee,sandwich and several books and magazines. Good luck Colette

[Corin850]

all 10 replies have suggested no side effects. 24 hours after I feel tired, irritable, a little woozy. hopefully tomorrow I will feel better! yesterday was my third go, and I was in hospital from 1030 to 1830. I am wondering whether its worth it.

[Kimsome in reply to Corin850]

If you get sick a lot or get the chills I would do it. These are so costly and the product of thousands of donors ....i was so privileged to get approve. I almost died on a few occasions, after waking up on a ventilator, disease control referred me to a Dr. And he set me up. I was so excited. But I know it's hard to think of dedicating that much time... I think you'll be glad you did.