Questions about relapsing and being sick

Emily has relapsed faster when sick. My theory is that the germs (virus, infection, etc) uses up the IVIG faster than the bad CIDP antibodies do.

Any time Emily has had a relapse we do a loading dose then resume with maintenance doses. Depending on how bad the relapse is we usually start to see results by day 3 of the load with her being back to normal by day 5.

Our home care company will not infuse IVIG if you are sick. They say if you are sick & get IVIG then you won’t know if you are having a reaction to the IVIG or if it’s just your virus. Emily has had her infusions rescheduled a few times due to being ill.

However, Emily has had her infusions when she just had the sniffles or a runny nose. If there is any diarrhea, vomiting, headaches, nausea, or muscle aches that’s when they refuse the treatment.

I hope you feel better soon.
Kelly

Emily has never been as bad as she was when she was first dx’d. But she does go downhill fast.

Since she has the eye involvement that is the 1st to go & gives me a heads up that she needs IVIG. We’re lucky in that her muscle weakness doesn’t start for about 2 weeks after her eye paralyzes. She does get pain in her feet, ankles & legs usually 2-3 days after the eye starts to go bad.

Emily is a unique case in that she doesn’t really get the normal amounts of IVIG. She currently gets 20 grams of IVIG every 2 weeks (was at 3 weeks & we tried 4 but she relapsed so we’re starting over). She went 20 months without a relapse & her loading dose then was 100 grams – 20 grams given every day for 5 days, with her maintenance dose being 20 grams.

During the last relapse we gave her 20 grams for 1 day then 30 grams for 3 days. Now she’s back to the 20 gram maintenance dose. I believe her maintenance dose (using the standard protocol) should be 25 grams per month.

Our theory has always been that once things start to go downhill with a relapse then we need to load her back up with IVIG then use the maintenance dose to…well…maintain. We’ve found that even if we catch her eye on day 1 & give her IVIG that same day that she still requires a loading dose. Once she starts to go downhill a maintenance does is never enough to stop it.

But, as I’ve learned over the years, Emily is no where near being a normal CIDP’er.

Hope that helps,
Kelly

I’m going through pretty much what you are. I am in the midst of a relapse. I just finished a loading dose of 2 gm/kg and I can see improvements already and I just finished it on Sat. I didn’t let the relapse get to epic proportions before I asked for help this time although my progression seemed slower too. I had been getting IVIG up until Sept but didn’t think I needed anymore as I wasn’t feeling that “boost” so I talked the Dr. into discontinuing it. He really didn’t want to but abided my wishes and now he gets to say I told you so. I have had a cold previously and it knocked me for a loop. Usually I think the IVIG is like a miracle drug when it comes to taking care of colds and such. I think it helps get rid of them quicker. For me this loading dose knocked me on my butt. I had major migraine/hangover type symptoms for 2 days after even though I medicated with Tylenol around the clock. I think it was the dosage and my body wasn’t used to it again.

[QUOTE=deem] 1. To those who get IVIG and have relapsed, can you tell me how long it takes to start feeling better usually?

2. Does anyone here see a return of symptoms if they get sick?

3. My infusion company mentioned since I am already sick with a cold and with active CIDP, then I may suffer more adverse side effects from the IVIG. Has anyone experienced this? [/QUOTE]

1. How long it takes to feel better varies with how sick I am – i.e. how active is the inflammation – is my temperature over 101, do I feel flushed, are there red places and swelling (usually only on my face)… the sicker I am the longer it takes to feel better. Along with that, it varies with how much IVIg I am getting and how often and whether the side effects crush me or not.

2. Oh yeah, big time, and it’s pretty quick too though it’s never been as severe as when I was at my worst in the hospital. But I can go from no numbness when I go to bed to waking up with half my face numb, one and a half legs and maybe some other spots thrown in. I attribute this to just plain inflammation – your body is fighting something else thus inflammation is already there ready to head to it’s favorite target – myelin. Sometimes the inflammation leads to damage with me and the numbness lasts longer than a day or so but usually it’s just inflammation and goes away/back to normal in a few days – assuming I am over whatever sickness triggered it.

3. Yes, it’s not much fun and it’s better to be well first for the reason Kelly mentioned, so you can tell if you are getting side effects or not.

Are you still sick?

I know that steroids are an immuno-suppressant so they might make you more susceptible to the illness. The IVIG should help some with that though.

When Emily was on the ‘roids for a few months the poor girl was sick the entire time. Those kindergarten germs can be ruthless!

I hope it works & you’re back to your “old” self again soon.
Kelly

Hang in there Deem,

You’ll get this under control. It seems there are many who suffer out of pattern right at this time of year. There are alot of germs going around and
everyone passing them around kissing and hugging on the holidays.

Try not to worry about a resistance type thing. Naturally you will need to increase meds to put it in check and hopefully you get back to normal.
Lets see how it goes after your next infustion. Let us know.
Have a great day, tim

Deem,
I am so sorry you are struggling. Please try and have faith in your body and it’s ability to repair. It did it before and it will do it again. I always have to remind myself that this is why it is called “chronic”, it flares and then slowly gets better. Try and be good and patient with yourself. Let us know how it goes.All my best,
Linda

Yes, I get the all over numb feeling too. My face feels so weird and it’s like being covered in wax. Like a second skin.

I got the stomach flu/virus Thanksgiving and it still has me feeling tired.Commented today to one of the nurses how I feel. My body can’t
mend itself as quickly.