AND You aren’t dumb! Plain and simple…this is one thing I’ve learned here and elsewhere is that the freaking pain can switch your brain functions off in the most peculiar directions….
Are you doing any pre-meds at all? Such as Tylenol or Benedryl? I have gone up and down the single and combo menu of the above and now chomp down Benedryls before infusion at home. I am just grateful that I can get off so easily in this respect. I am and DO have to be careful in the summer tho, as it’s soo easy to become dehydrated. I cheated this last time and had some gatorade two days before infusion to ‘help’ things along. It worked, I guess.
I’m not a ‘dosage’ expert. I do and can, as should you, look up the brand of IVIG you are getting and then web up ‘prescribing information’ Then read all 10-20 specifically designed to be incomprehensible pages…. The good news is tho, there are ‘800’ Telephone #’s with these that you can call. I have found them very helpful over the years. Truly.
Another aspect? IF your doc has ordered ‘Gammunex’ and you are being infused with ‘Octagam’? And, that you have a copy or ask your ordering doc about this? Well, the FDA says they cannot substitute without notifiying the DOC within 10 days of the substitution and then the doc has to notify you! That is why we keep those scraps of paper…they can be important in the long run. So…don’t go running off complaining? First get ‘copies’ of your last however many months of ‘orders’ and deliveries… Then go ask the doc.
In the meantime ask about pre-medications… It does make a real difference. Switching brands, if that is the case?, without your knowledge or consent, can be a sticky thing and YOU the patient should NOT be stuck in the ‘middle’, if you get my drift. I have been there and it’s a messy place to be for sure. But, it’s a place for the prescribing doc, the paying insurance company, the infusing company and the FDA to deal with….not your issue other than you’ve wasted time and IG for naught. I’ve got that tee shirt! Don’t worry there.
Blood tests? Never ever have tests unless they are the DAY before infusions! I have had soo many insurance rejections for tests that docs have had to re-do because they wanted Info= #’s, which are really truly skewed unless the day before infusions. That’s the closest to normal [?] I guess I can get and those #’s are often out in either left or right field at any given phase of the moon…I now have docs ‘trained’ for the day before and make sure it happens. They have to ‘experience’ the realities to believe it…I’ve many docs for many things …. gotta train them.
Hang in there and do NOT get discouraged! Stick to your guns and let them have it!