Ty
While hydrating is a wonderful helpmate to mitigate all sorts of issues that can arise during ivig, aseptic meningitis is not one. While it is true that it is not bacterial it is not ruled out totally as viral. You cannot just flush it through your brain and avoid it. Some ppl will get it. However, it is important to note it is rarely life threatening, spontaneously clears up within two days usually.
If you develop this you are very likely to have it recur at subsequent treatments, getting milder until it hopefully goes away. Most ppl who get flu like symptoms do not get fevers, if you do and it is above 101.5, with a shooting headache from the neck you may, most likely do, have it. For some reason it is not discussed, hence treating nurses do not know. I was on a neurological unit of a renowned teaching hospital, no less prestigious than Mayo. They were used to seeing flu type symptoms but not fevers and seems they just do not treat many ppl with ivig inpatient. I have no idea why.
I told them all, I want something to calm me 1/2 hour before you start the treatments. The one day that did not happen, and I was hooked up before I realized it, I asked for it. The nurse said I could not have it until bedtime. It was just an anti anxiety pill. I had been given my first treatment at midnight due to ins dragging their feet approving them. The next one at 8pm the next day and this one was at 4pm day three so they had it in their heads it was a bed time pill. I said heii no, I need it now. The dr, did not come so after 30 more mins, I told the nurse, well, I have some in my purse, eff you. I took one. Oh, then the roof caved in. They said, you have to send that home, right. Now. Right. Already gone. Right. Punched the call button and sweetly told the nurse to tell dr. So and so to not come to my room. I did not need him. Everyone knew I took it. The orders were fixed and apologies made all around. I waited for him for 45 min, and was already 30 into treatment.
But, hydrating did help (I did hydrate before going in) a lot of issues, but the AM was not one.
Ty
I had gone to one of those mega multi-location pain centers and after a lot of just awful stuff I changed over to a phydiatrist. They may be in the phone book but I happened on mine through the grapevine. He’s a one man office and I like that.Of course he had no clue on CIDP but after having me as patient for 5-6 years hope he does.
I’m on 100 mc Fentanyal patch changed every 3 days. Used to have 6 Vicodin a day too but rarely ever take one now. Sometimes gotta had a small bit of Ativan for comfort but basically the IVIG has helped tremendously with pain.
Do check the other older threads for “pain” and “pain meds”.Another website is PainFoundation.org/sends free newsletter.
Ty
Before I was correctly diagnosed with CIDP and had 2 years of IVG under my belt the non-stop horrid “I wish I was dead yesterday pain” knew no end. Today I can’t imagine how I was able to even exist in that much pain. My good friend watched me in agony and told me she truly would understand if I decided not to go on living. She’s never seen anyone in that much acute pain.
I go to a physiatrist who specializing in pain management.Ask every doctor you see what they may think in causing this pain. Take an advocate with you for support.
Pain drives ya bonkers. I wonder each day if it’s going to come back like it was before.
I try to find some joy in the most simple daily things.It’s not easy as you well know.There are several excellent older Forum posts on pain and when I read them it did help. I didn’t feel as alone.
ty
Thanks Brandy,
We settled the fight over IVIG years ago.. I’m trying to get approval for the Rituxan. The Doctor called yesterday in the am, and said it had been approved. and they set the infusion date for monday. About 7pm he called back and said when the paperwork was faxed back and forth it was denied. Monday was cancelled. I’m just about over the up/down / shock tonight. I wish they had waited until the paperwork was done… I wish I had kept my mouth shut, until I had it n my veins. It was ordered Sept 6th 2006, after a 3 month wait to see this doc… It was never expected to be approved the first try. Thats what had everyone so excited.. well me anyway.
peace
Kevin