Advice needed about ivig

[Deleted]

Hi there,
Im new to the boards, i got reffered here by someone but i cant remember who it was.

I have been ill, and im only just getting back on my feet, so i couldnt check back on the post on PIA and now it doesnt exsit anymore.

To cut a long story short, I got diagnosed with CVID in October but it wasnt confirmed until December just gone.

I have to go to go to the hospital for my infusions, i went to the hospital for my first one a few weeks ago (200) and i felt fine apart from a small dizzy spell but when i went for the second one (the full dose 400), the day after i lost my voice and i felt really out of sorts and quite down.

I had a massive headache and then i started coughing and nasty stuff came up (Sorry) , i went to the docs and yet again it turns out to be a nasty chest infection, so i have to up my dose of Amoxocillin 500g for 3 times a day rather than just the one.

I wanted to ask, is this to do because i am having the infusions and will this happen all the time ie, headaches, losing my voice and feeling out of sorts?

Many thanks
Kitty Kat

[liz2mac]

Hi Kitty Kat,
Sorry, only just seen your post. I'm new to forums, so I didn't realise that when I first logged in I wasn't seeing all the threads.
Feeling somewhat unwell at the time of your first few infusions is a "normal" reaction and to be expected. Getting a worse infection & headache afterwards............hmm. I think the infection afterwards could just have been a coincidence. I'm surprised that you have just had your amoxyll dosage upped. I'm guessing that you've been on amoxyll as a prophyllactic (don't know if that's spelt right) in otherwords on it all the time to try to stop you getting an infection? The normal way my team treat me when I have a "new" infection is to send a sample of my sputum to the path lab to see what it will grow. Hopefully, despite being on amoxyll already, it would grow a specific bug which you could then have the appropriate antibiotics for. I think having amoxyll as a prophylactic is out of fashion these days. Most of us who have antibiotics all the time are now put on azythromycin as it has been shown to reduce inflammation as well as ward off bacteria.
Are you being treated by an immunologist or by a chest or other physician?
The headache. I don't know, what immunoglobulin product are you on?
Liz.

[barbfrombc]

Hi Kitty Kat - I am thinking that Liz is right and your infection after the infusion was just a nasty coincidence. A headache itself is not unusual though. Many of us do get a headache, especially when we first start having infusions. For most folks these are not debilitating and get less severe and less frequent as time goes by. I have to infuse very slowly and I still get a headache each time, but its nothing that a couple Advil won't fix, and its a small price to pay for the better overall health. If the headaches continue to be a problem for you, please speak to your doctor. There are several things to try including simply drinking lots more fluids before, during and after your infusion. Also, some benadryl or a steroid pre-infusion helps some folks. Hope things go better next time.

Barb

[Deleted]

Hi Barb,
Thankyou very much for your help . Your right there, i have noticed a slight change already and i am glad that they found it when they did.
Fingers crossed.

from
Kitty Kat