Hi,
I am four years post FCR and have been suffering with lingering coughs following winter colds. At the end of last year i developed pneumonia following a cold in November. My hematologist has decided that I would benefit from IVIG infusions during the winter months, as he is worried I could damage my lungs. Any advice on these infusions would be great please.
Thanks
Colnegirl
Hi Colnegirl,
I’m in my sixth year post FCR now and have also had a lot of experience with IVIG infusions. In 2014/15 I was plagued with infections of different kinds including chest infections, eye infections and like yourself eventually pneumonia. One of the trademark symptoms of low IgG (immunoglobulins (antibodies) count) is that the infections linger on and don’t always respond well to antibiotics. I had a course of six monthly infusions. After only two of the six sessions I was free of all infections for the first time in months. Unfortunately a few months after the infusions ended I had another infection and was put back on the IVIG treatment. I am currently on five week cycles with the treatment now. It appears that some folk only need a boost with IVIG treatment to “kick-start” their immune system, whilst others like myself lose the effects of the treatment after a few months and need multiple top ups. The IVIG infusions are done at my local hospital and take about two hours to administer. The brand of medicine I am on is called Octagam and I have not experienced any adverse side effects of any kind whist on the treatment. As with most infusions drink plenty of fluids.
Take care and I hope your treatment works well for you, good luck.
Kevin – Essex, UK
I've posted about my IVIG experiences here: healthunlocked.com/cllsuppo...
and my subcutaneous IgG experiences here: healthunlocked.com/cllsuppo...
Thanks for that AussieNeil, that was a really interesting read as I know very little about these infusions. I hope I benefit from them too.
Thanks for that detailed description Neil, very interesting and informative. Although not widely available yet, subcutaneous IgG treatment is now being used more and more in the UK. We have many donors to be thankful to for this very expensive treatment.
Take care
Kevin – Essex, UK
Following a March 2016 CAR-T infusion my wife has had three IVIG infusions. The clinical trial protocol calls for an IVIG infusion if her IgG falls below 400. Her IVIG infusion takes about 2.5 hours. She has not had any side effects from the IVIG.
Colnegirl,
IVIG's help your immune system. A lot of times when my CLL is stable, I still suffer from low immunity. Even when stable I am exhausted and achy. After I get an IVIG I start to feel so much better. It'll fight any infection you have therefore making you feel stronger. The IV does take a long time to infuse into your vein though so be prepared to stay for about 5 1/2 hours.I bring juice, nuts, and raisins plus books I haven't had time to read etc. When I had pneumonia, the IVIG really took care of it along with antibiotics. I've done Rituxin but can you tell me what FCR is? Thanks and hoping and praying that IVIG works for you like it works for me. GailCat3
Thanks for that GailCat3, your experience sounds very positive. It is interesting hearing how different people have found/coped with these infusions. FCR is chemotherapy using the chemo tablets Fludarabine & Chlorambucil with the Rituximal.
Hope all goes well for you.
Colnegirl
Colnegirl
I read some people are talking about reactions they might get with the IVIG. I forgot to mention that the nurse infuses (Through your IV line) Benadryl to cut down on any side effects. Also at the beginning they give me 2 oral Tylenol in case of headache ect, They also infuse normal saline to keep you hydrated and maybe to to help buffer the immugloblin. I'm not sure about that statement though. But anyway I don't get exhausted afterwards like I do with iron infusions but everyone is different.
My best to you
Colnegirl
There is the new subcutaneous Ig, which is self administered with a small pump, done weekly... many CLL patients prefer it...it seems to give a more even dose... takes just 40 minutes to do... side effects often are site rashes ... but minor.
~chris
I haven't been offered that, perhaps not available in the UK?
Thanks for this information though CLLcanada.
Its certainly available for PID in the U.K. ... CLL is not rprimary immune deficiency, but it should be funded
During IVIG, starting hydrated and maintaining hydration is important. The standard procedure involves isotonic saline buffering before the infusion, between bottles if there is a batch change and at the end per my third paragraph of my post about my experiences here: healthunlocked.com/cllsuppo...
I've not been offered pre-meds like Benadryl or Tylenol and manage fine.
Neil
Well, I had my first IVIG infusion on Friday. I wasn't offered pre-meds either. I just had the saline buffering and the infusion. It went really well and was administered in about 3 hours without any side effects. I felt very tired when I got home and ended up sleeping all afternoon and got leg cramps during the night. Today (Sunday), I have got a headache and stomach pain, but both seem to be easier once I take paracetamol, so will just see how it goes.
Hope you get to feel some benefits soon. No idea but hoping the first one is the worst. Xx
I had the worst leg calf cramp in a long time the night after my first IVIG infusion. Haven't had any that I recall in the next 6!
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