Immunoglobulin - intravenous. recommended for low count by haematologist. Any comments ? pros and cons ?

[aussiejo]

[AussieNeil Partner Administrator]

A low count of IgG I presume Aussiejo? It takes several thousand blood donations to provide enough for an infusion, so this treatment is not given lightly due to the limited supply and cost. Given that you are receiving a derived blood product from a huge pool of donors, there is always the risk of infection, but this is very low in Australia.

My haematologist has told me that I may need Intragram too if my IgG drops any lower and infections become more of a problem, but my last IgG test result actually improved slightly, so I can't speak from personal experience. Many with CLL that have got to the stage of having intravenous Immunoglobulin (IVIG) have commented on what a difference having them makes and how they notice when they are approaching the need for another infusion. How often you need them varies too. The main benefit is the boost it gives you in fighting off bacterial infections, though it does slightly improve your ability to fight some viral infections. The rate at which the infusion is given and the premeds seem to be the primary factors in determining how well the actual infusion goes, so if your first experience isn't that good, be prepared to work with your team to find what works best for you.

For more, check out CLL Topics:

clltopics.org/tchoices/IVIg...

Neil

[aussiejo in reply to AussieNeil]

Thank you for the reply. You have clarified the need for the IVIG. Your IgG level, sounds good that it has improved - but what is it ? More related questions. The intravenous Immunoglobulin has resulted in an infection at the entry point. Ironic that the treatment to lower risk of infection has in it self resulted in an infection. Hand is red, swollen and a slight body temperature. Went to hospital. Given antibiotics, injection and tablets. Recent chest infection - the need for the particular 'bug' to be indentified by growing culture to administer correct antibiotic. This hand/entry point infection no mention of culture test. Should I be asking why no culture test ? Or is this standard ? Premeds - what are these ? Intragram ? the overseas replies mention brands of IVIG - is Intragram a brand in Australia ?

[aussiejo in reply to AussieNeil]

Thank you for the information link. I have asked you a couple of questions that the link has answered such as IgG. sorry

[Cllcanada Top Poster CURE Hero]

I might add that changing brands of IVIG, often helps with problems and side effects. IVIG is made in different ways, and some brands work better for some people than other brands...

I know a number of people who have monthly infusions and really benefit from it, there is also a sub-cutaneous version, but it is not used much in CLL.

[Bisto CLLSA]

I have been on monthly immunoglobulins for five years. My brand is Gammaplex. I have benefited because I have had no serious infections in that time and the monitoring indicates that my neutrophils are certainly improved as a result of the treatment. I have no serious side effects but I am tired and listless for 24 hours after the infusion. If it is recommended I would advise you to go for it.

[MsLockYourPosts Passed Volunteer]

The Queen of IVIG (private joke with Chris) weighing in. I have been getting IVIG for 10 1/2 years. Before starting I lived with infections which did not clear up even after multiple rounds of antibiotics. The last major round was a UTI that landed me in the hospital septic. I have, since starting IVIG, had a couple of minor UTIs, a couple of allergy related sinus infections which I was able to clear without antibiotics, and one possible flu - a couple of days of feeling just really under the weather, but without a significant fever or any other symptoms. I started at monthly, changed to every eight weeks for about three years, and just went to every 6 weeks as my IgG level was going down too fast. I do get flu shots yearly as well. I saw my hematologist last Thursday, and her first question was whether I had had one this year, so she clearly thinks they are important.

Pat

[aussiejo in reply to MsLockYourPosts]

Thank you for reply. Very helpful to know of your long term experience with IVIG. I please need to ask what do the letters UTIs mean ?

[Cllcanada Top Poster CURE Hero in reply to aussiejo]

UTI ... Urinary Tract Infection... mayoclinic.com/health/urina...

[aussiejo in reply to Cllcanada]

Thank you, I trully value your replies and information links are very helpful

[lartington]

my husband has been on ivig every 28 days for 3 years now. His neutrophils hover around 0.5 to 1.6 and he still gets sessions of sepsis which require being in hospital for several days. On the whole his general health is much better than pre-ivig, he is more lively. He takes on board 1.5 litres of fluid the day before ivig and 2 ;litres the day of the infusion and thinks this improves his side-effects.

[Damms]

I have earlier been on Privigen (immunoglobine) once a month. I had to go to the hospital to get the transfusion and received a lot of premedicine as I had an alleric responce to it.

The pos was no infections and before I was batteling with a sinus infection for 4 months. The neg was the monthly trip to the hospital It made me really feel sick, and the premedicine and immunoglobine made me tired, hungry and dizzy.

After 4 months off immunoglobine where my numbers so low and I started getting infections again that I needed immunoglobine transfusions again.

This time I was instructed in doing it at home. I have a small pump, where i have three very small needles which is placed on my thigh or stomach and it takes aprox. 45 min once a week. I dont feel sick and compare it to a diabetic having insulin.

I tolerate this much better, have only a slight headache after having the transfusion, but it is gone within a few hours. And I need no premed.

[MsLockYourPosts Passed Volunteer]

Privigen is know for the very few people who react to it. I'm sorry you had a bad experience and glad you found a solution!