Infusions

[Vintagemama]

hello everyone! Iam new, so would really appreciate your help. After I have an infusion, I feel quite Ill for about a week. Is this normal? Does anyone else feel the way I do. Thanks for your help!

[Jm954 Administrator]

Hi there and welcome. 😊

Which infusions are you having?

Jackie

[Vintagemama in reply to Jm954]

Thank you for asking Jackie. l only know they are 5 hrs. long. I think they may be lgG. They are made by previgan.

[cllady01 Former Volunteer in reply to Vintagemama]

Welcome, Vintagemama! It would be very helpful for us to know for what is the infusion given? Were you having a lot of infections? Can you tell us a bit about your history with CLL, have you been treated and with what treatment?

Sorry to be so inquisitive, but it helps us to help you, if we have some details.

[Vintagemama in reply to cllady01]

hello cllady 01! The infusion wasgiven to help my immune system.I have LOTS of infections, and one that is very painful is interstitial cystitis.I have bladder infections all the time. I take an antibiotic every day, but still have an infection.I have an infusion coming up. It will be my 5th one.Iam 71 yrs. old, and was diagnosed with cll in Dec. 2019.

[AussieNeil Partner Administrator in reply to Vintagemama]

It seems that you are having IVIG Privigen infusions to boost your immunoglobulin/antibody levels, so that you are less likely to have potentially severe infections. We've had two recent posts on this topic, with this first one linking to the second and many more previous posts. healthunlocked.com/cllsuppo...

In summary, you may feel much better if you switch to a different manufacturer, or if this fails, switching to subcutaneous IgG. The latter you can do at home about once a week. It takes about one to two hours and has a much lower side effect profile - which is why it can be safely done at home. You might possibly be reacting to the pre-meds given to reduce the likelihood of an infusion reaction. In Australia, these aren't given unless there's a need for them.

Ask your doctor about which of these possibilities is worth trying for you. Having access to IgG infusions can make a huge difference to our quality of life and you are being impacted by your current IVIG far more than is the norm.

Neil

[cajunjeff]

Here is a link to a site that has a good discussion of ig infusion side effects. I hope it helps.

nufactor.com/healthcare/res...

[Vintagemama in reply to cajunjeff]

Thank you Neil and cajunjeff for the info! I read the link you gave me to read, andWOW, it really helped answer my questions about infusions.Thank you!I have one more question, I'm a diabetic, and have to take insulin shots. does the steroids they give me before the infusion cause my blood sugars to go sky high.For about a week my readings are really high. Do you know if that can happen? Thanks for all your help!

[AussieNeil Partner Administrator in reply to Vintagemama]

"Glucocorticoids oppose insulin action and stimulate gluconeogenesis, especially in the liver, resulting in a net increase in hepatic glucose output. Most people can produce enough extra insulin to compensate for this effect and maintain normal glucose levels, but those who cannot develop steroid diabetes."

en.m.wikipedia.org/wiki/Ste...

As I mentioned earlier, IVIG is given in Australia without premedicacation unless you show you need this. Mention what happens to your medical team and see if they will let you try without the steroid, or perhaps switch to subcutaneous IgG.

Neil

[MsLockYourPosts Passed Volunteer in reply to Vintagemama]

I have never been given steroids prior to my IVIG infusions, though I know several patients who are. Pre meds seem to include Tylenol, an antihistimine (usually Benedryl, either IV or tablet, though I now take Claritin) and steroids - different combinations for different people. I was able to get Privigen without premeds, and probably would be fine with my current brand, but take one Tylenol and 10 mg of Claritin, which I take for allergies anyway.

I would ask about possible combinations of premeds, as well as premeds before or after your infusion day, as is discussed in the article Jeff posted. Switching brands can also make a big difference. I reacted to one, once. Eliminating it from what I get solved that problem.