Started new infusion from weekly to monthly

[jenar2015]

I recently have gone from weekly infusions to monthly due to the time and convenience of it. My doctor is always awesome with open communication with me on the different ways to help my Autoimmune disorder. I have been in the hospital and out on medical leave the last three weeks and no medical reason can determine what caused my spiking fevers, spine Paine and fatigue that I have been experiencing. I feel like a lab rat and it's time for me to go back to work on Monday and I am concern that maybe it will set me back again and land me in this hospital. I just feel lost and I don't have anyone to talk to that understands PI and wonder is this what I should just accept now as my life of never feeling well or it will just pass? I am just confused on if I should continue these infusions. I will call my doctor I guess and talk this over with him. Just is so confusing having this! Thanks for listening!

[mali42]

Hi Jenar

It might be the change of infusion times, What are your trough level ? they might be to low after 4 weeks and you need them more frequently, I feel ok on 3 weekly ivig and have not had any spiking fevers for no reason. our conditions are very confusing at times.

you need to see your Immunologist and discuss this with them.

Hope you feel better soon.

Malcolm.

[s162216]

Hi and welcome to the forum,

I agree with Malcolm, it's likely that increasing the gap between infusions is leaving you with a high level of IgG at the start (which can make reactions more common), and by the time you've got to the next infusion a month later your levels are on the floor. For those on 3 weekly IVIG that is quite a common problem, and is well known to be associated with fatigue and being more prone to infection shortly before the next infusion.

I am of course assuming you're on subcutaneous IgG and not IV, but having SCIG every 4 weeks is not the usual way of doing it, weekly or at the most every 2 weeks is the typical treatment schedule. If you have it every 4 weeks then you lose most of the advantages of SCIG - more stable levels due to more frequent dosing, not having high blood levels of IgG immediately after each infusion etc.

Talk with your immunologist about your concerns,

Keep in touch,

Sam.