anybody have symptoms of chronic fatigue? polysorbate80??

[charley]

Hi there, wondering if anyone has looked into the symptoms of polysorbate80 which is a extra product in Hizentra the Subcut infusion drug. The immunologist has said i have chronic fatigue symdrome, but i have not felt this level of excessive lethargy before starting on Hizentra and i am wondering if it is not in fact the CVID and its secondary problems, its the preservatives in the drugs they are putting us on? has anyone done any research or had these things happen to them? The side effects of polysorbate80 are fatrigue, lethargy, weakness, aches and pains, red raised infusion marks, which i have all these symptoms but originally just trusted what the immunologist was telling me about chronic fatigue. 

Adivce needed as trying to work out if its better to go back on IV as it doesnt seem to be in privigen and want to get my life back from the extreme fatigue!

Thank you muchly

[CVIDprincess]

Hi Charley,

I use Hizentra and have the exact symptoms. I am being told that either I have an autoimmune process going on as my ANA test is positive at > 1:320 and/or it my Fibromyalgia which I was diagnosed with in 2006. I have to take an ADD stimulant in the morning just so I can stay awake and not sleep all day. I also suffer from chronic muscle pain and I do get a painful red bump when I infuse. Now, I just thought the bump would be from pushing a liquid into a spot where there is no space, but I am open to the possibility that you suggest. Unfortunately I don't have any answers for you, but hopefully someone will reply who might.

What country are you from? I am from Canada and I know the Hizentra representative was all over me in regards to the headaches I was getting. It is a very new drug here, so they are eager to hear about side effects. If I don't hear anything else about it, I might just call up the folks at Hizentra and ask about it.

Cheers,

Robyn

[charley]

Hi! I'm sorry I only just seen this post! I find this website confusing! I'm uk based. I have now switched from hizentra back to an IV drug which Is octagam, I am soooo happy with it, for the first time since diagnosis I am feeling like me!!! No head aches, no fatigue or muscle aches!!!

My advise is to keep switching untill u find somthing to suit you. There will be somthing that works better for u, I just thought that was my life to just deal with chronic fatigue and pain. But no thank you!!
Iv also being seeing a lady who has put me on supliments to work my thyroid and adrenals back to health. There's some in the states too or u can do Skype consults, check her out, Jo gamble at embracing nutrition she's on google. Made my life a hundred times better in a few short months! X

[supersub70]

Hi this is just the thread I'm looking for! I searched for "Fibromyalgia" because I think I'm exhibiting a lot of the symptoms such are IBS, Aches and pains, over sensitive to touch, brain fog, loss in concentration, stiffness and painful Sub-Cuts particularly in my tummy area. Guess what medication I'm on? - Yes Hizentra! I've been on Sub-cut now for nearly 6 years but lately been feeling all these symptoms and if I'm honest, going onto Sub-cut was more a lifestyle choice (work commitments etc) than a health choice. I've never really been convinced it's more effective than Iv, no real evidence for that claim, just an anecdotal feeling. I was on Octogam before I went sub-cut. I'm at my local Immunologist this week for an 'observed infusion' so I'll raise my concerns then.

[margaretbear]

I should have read these posts a year ago! Fatigue, brain fog and lightheadedness have been my life since I started hizentra. I finally figured it out a couple months ago and stoped the hizentra, and I was me again. It has been a little scary being off everything for 2 months, tomorrow I start gammagard sub cut, I was fine with that IV. My psoriatic arthritis pain came back with a roar, hoping it will go away again. I had to stop the drugs for it with CVID diagnosis, but skin and arthritis psoriasis both went away in just a few months on IVIG