Scheduled to start antibody infusions

[Michael199]

I’ve been reading and getting a lot from this forum.

Now I have a question. Today I saw my hematologist and will begin antibody infusions. My vitals are not getting much worse but am getting some swollen lymph nodes, consistently fatigued and usually fighting off some kind of an infection. I’m nerves and have no idea what to expect.

can anyone give me a heads up as to what do I expect?

I would appreciate hearing from someone who’s been through it.

[CycleWonder]

I am assuming you will be receiving an IVIG infusion.

You may receive Benadryl prior to the IVIG. The first time I received the Benadryl via the IV. The next time I took two tablets (50 mg total). The 3rd time one 25 mg tablet. The Benadryl is to prevent an allergic reaction.

The first IVIG infusion took about 3 hours, including the Benadryl via the IV. After 20 minutes, the IVIG solution was started, very slowly. Since I had no reaction, after an hour the nurse increased the drip rate. After another 30 minutes, the drip rate was increased again. When it was done, the nurse used saline to flush out the IV, then she unhooked me.

I was a bit unsteady due mainly to the Benadryl. I was driven home, and I took it easy the next day. Then I was fine.

I didn’t get sick for the first 8 weeks I was getting the IVIG infusions. Then I got Covid.😢

[Michael199 in reply to CycleWonder]

Thank you very much. They told me about the possible allergic reaction. Where you able to drive yourself?

Did it hurt?

Also did you feel better after treatment, Less infections and less fatigue?

[CycleWonder in reply to Michael199]

I did not drive myself due to the Benadryl. I was affected for about six hours after the IV Benadryl, maybe four for the 50 mg tablets.

None of it hurt, other than the usual prick as the IV was inserted.

I was tired the next day but it was amazing not getting sick for 9 weeks afterwards.

[Michael199 in reply to CycleWonder]

my biggest problem is that always having to fight off infections causes a lot of fatigue. Did you feel more energetic after getting infusions?

[CycleWonder in reply to Michael199]

I was getting sick frequently so having to work on getting back into shape after each illness. Not being ill for 9 weeks allowed me to gain a lot of strength and endurance back, so I felt much more energized.

[Fant1924 in reply to Michael199]

I have virtually no reaction from IVIG. I drive afterwards, play golf, and/or carry on with my life without regard to IVIG.

Dennis

[AussieNeil Partner Administrator]

This was my experience. healthunlocked.com/cllsuppo...

After a year I swapped to subcutaneous IgG replacement therapy. You do this at home weekly; it saves your veins and gives you a much more even level of protection. IgG has a half life of about 3 weeks, so your IgG boot drops to half the infused amount in 3 weeks, a quarter in 6 weeks and so on.

Neil

[Michael199]

did you feel better after starting the infusions?

[AussieNeil Partner Administrator in reply to Michael199]

I'd had a couple of emergency hospital admissions for IV antibiotics, which was why my specialist arranged the IgG supplementation. I'd also given up using public transport because I'd frequently pick up respiratory infections afterwards. (CLL severely compromised my immune system and I was chronically severely neutropenic.)

IgG replacement therapy meant I could be more relaxed about social mixing. The switch to subcutaneous IgG meant I was able to travel internationally - requiring about 40 hours in close proximity to others each way. I couldn't manage a couple of hours on a bus without getting ill beforehand. (It was after picking up an exhausting cough that took me about 10 weeks to get over, that I quit taking buses and trains.)

Neil

[Michael199 in reply to AussieNeil]

I rarely get extremel ill. But I work in a casino and around thousands of people a day. I am literally kept ill always and always exhausted.

[AnneHill in reply to Michael199]

Hi, I have ivig every 4 weeks. I have had them for around 7 years and havent had any infections since. I have never had any pain. It is a needle in a vein in the back of my hand and a drip from a bottle of immunaglobulin going into the vein.It is a case of waiting so take something to do. I read but you can take your ipad or phone. Sometimes I go to sleep. It hasnt stopped the fatigue.

Hopefully you will have some relief from infections, Anne uk

[thb4747]

Hi Michael,

I’ve been having these infusions every 4 weeks for more than 10 years. During that time I’ve had no colds or flu but I did get Covid and I’ve had pneumonia twice. Like Neil I’m about to start subcutaneous IVIG at home weekly as my veins have given up the ghost! Go well.