What's your typical reaction to your IVIG treatments?
July 7, 2017 at 7:34 pm
Now that I have been receiving regular monthly infusions of IVIg since April, I’m starting to see a pattern emerge.
For several days after the infusions, I’m very fatigued and some of my symptoms seem to flair up.
By the 5th to 7th day, I see improvement in an afflicted area. In May, for instance, I regained much of my upper body strength.
Towards the end of the month, as the IVIg wears off, some of my symptoms see to flair up, from minor to moderately.
I finished my two day treatment on Wednesday, and right now I’m tired and my legs and feet hurt like hell.
I’ll update this post later next week and share what I kind of a boost I got this time (hopefully).
July 8, 2017 at 1:01 pm
please keep us in d loop of your progress and if it worth it, i am very interesting in bicouze i will get IVIG and it will help know from someone that is going through.
July 8, 2017 at 11:37 pm
I usually see improvement in motor skills/functions around day 2-4 with more improvement over 7-10 days. Around the last 3-4 days of cycle I can notice decline…sometimes none, sometimes mild, and sometimes moderately pretty quick over those few days. I lately am noticing what seems like more chance of fatigue but not always just like the post infusion day headache.
July 8, 2017 at 11:50 pm
Thank you for respond cer100, another question is plasma infusion the same as IVIG infusion? im still do not know if they are the same thing or they are two different things.
July 9, 2017 at 12:39 pm
Do you mean Plasma Exchange which is the same thing as Plasmapheresis (see recent post here in forum)? Those are not the same as IVIG infusion.
Thinking about it though, maybe it depends on the context plasma infusion was used in. I havent heard that term before, but IG is part of blood plasma and extracted from donors so I suppose IVIG could be considered a type of plasma infusion/transfusion but as mentioned, I havent heard of IVIG referred to like that. Hopefully someone more experienced will be along and clear it up.
July 9, 2017 at 7:03 pm
Thanks Cer100. Your reaction to IVIg sounds close to mine. My fatigue is starting to lift and hopefully I start to see an improvement in the next few days.
July 9, 2017 at 9:36 pm
Hey Bryan, same for me this time after my infusion. Remember, I am on an every 2 weeks cycle and while I had the best 4 days in a long time 3-4 days after my previous infusion, this last one was the complete opposite. Extreme inflammation in thigh muscles and more nerve activity in my calves. Stronger inflammation in the forearms but nothing like the legs. Really bummed me out as I had been feeling so good. I am calling this a mini relapse but today was better so maybe I should not be so concerned. Saw the neuro last week for my 6 month elvauation and he did the usual strength tests and said I was doing very well. But because of my recent slide will keep me on every 2 weeks for now. He does not necessarily agree that every cidp patient fits into one of 3 categories ( I still think I am the slow progressive version) and likewise does not see a tendency for a general 1-3 year active pattern of the disease. Instead believes every patient is different and can’t be categorized. I like him but hard to not want to have some expectations with this disease. Told me to keep as active as possible which still makes me feel better than to just sit around watching sports on tv. Keep posting your progress, good or bad but let’s hope GOOD. Jeff
July 10, 2017 at 12:02 am
My first IVIG treatment-which was 5 IVIG infusions, 5 days in a row, was not pleasant. First, I was not premeditated with either Benadryl or Tylenol, so after the 2nd infusion, upon returning home (a whole mile away from the hospital) I became extremely ill with an adverse reaction to the IVIG-fever, rash, vomiting, abdominal pain, profuse sweating…just absolutely miserable. Being a nurse myself, an Oncology nurse well versed in dosing all blood products, IVIG being one of them, and of course knowing better-hey, I had no bones visible & I wasn’t bleeding! (My poor kids!) in my near comatose state I allowed my mother & husband to give me Benadryl & Tylenol. That (luckily) stopped the reaction, however I continued to feel absolutely miserable-my eyelashes hurt. I was still so ill the next day, I had to cancel my infusion. For the 3rd & remainder of the infusions, I was premeditated & the infusions went MUCH better, except for the brain imploding headaches. Luckily & suprisingly, ibuprophen & ice packs made those somewhat tolerable for the next week. Keeping things in perspective, I’d gone 2 yrs with no diagnosis, so my pain was relative. On the day of the 5th infusion, I was able to walk unassisted,-no wheelchair, no cane-for the first time in 18 months. I could handle some body aches & headaches w/ that (atypical) result. The next week, I was beyond exhausted. I always told my patients, healing is hard work on your body. It sure has a different meaning when YOU are the patient! I basically slept with head/body aches & nausea for 5 days. Then I felt like Wonder Woman for 2.5 weeks before the symptoms came back, hitting me like an Amtrak.
I’m now, 5 weeks later, on another round of 5, to be followed up with a treatment every other week. The one thing that has helped me the most is receiving the IGg at a MUCH slower rate. Day 1 was titrated to the max & by that evening I was already getting the massive head/body aches. The 2nd day, the nurse & I worked together to come up with a plan to slower the rate-to a max of 140ml/hr instead of 450ml/hr. Plus, I receive the entire flush bag to help as much as possible with keeping my fluid intake up. I have not had a body/headache since the first day! Today I had my 4th treatment & could walk in unassisted through the hospital!
My suggestion to you (& every patient I ever had-boy is it different on the other side of the bed rails!) is to 1)Hydrate, hydrate dydrste the day before infusions begin (& during of course, but it just wipes some out & it’s hard to drink when you’re asleep! 2) STRONGLY & informatively, ADVOCATE for yourself. 3) Take a journal with me to every treatment & write everything down: titration rates, physical symptoms, anything you think that may help you improve the infusion experience. Is it ever pleasant? No! But it doesn’t have to make you that much more miserable!. Also, write changes you notice between infusions, so you can track when another flare is about to begin, in order to stop it before it starts.
Sorry to ramble-I’m in the exhausted but steroid induced prednisone phase & I become quite chatty. Plus, I had to stop doing the thing I loved most-being an Oncology nurse-so any time I get the smallest opportunity to be nurse-y & use my knowledge to help others, it gives me back a piece of me, I most likely will never get back. I hope this advice helps you in some way, even if it was to help you get to sleep! Take care of you!
July 11, 2017 at 7:54 pm
So far, I’m having a typical reaction to the IVIg. I’ve had 5 or so days of fatigue, with pain and numbness ratcheting up in my legs and feet.
Today, I felt a bit more energized and my feet and legs are feeling better. I usually get a bump about 7-10 days in. That would put it about Wed thru Friday of this week. Hopefully the pattern holds.
July 13, 2017 at 11:37 am
Still have a lot of pain below my knees and in my feet. Also, there is persistent numbness in my fingers.
Haven’t got the usual bounce so far. Also, I’m just plain tired.
CIDP is a cruel mistress. Highs, lows and everything in between.
July 14, 2017 at 9:09 am
Day 2, post 2nd round of 5 infusions, I woke up asking for something to throw up in. We were inseparable pals that day- until I remembered I have almost an entire full prescription of phenergan in my med bag. After I took one, I started feeling just a tad better-meaning I could let go of the bowl-but then the dreaded headache set in. It felt as if my teeth were going to fall out of my head, & I wouldn’t have minded a bit. Today is post-4 day & I woke up and could open both of my eyes at the same time. My left eye is still sensitive to touch-yes, touch-if I touch my eyelid, I feel excruciating pain towards the back of my eye. I’m hoping the 1-day infusions I have scheduled before I see my neurologist, aren’t as bad. I honestly don’t know if I can handle the side effects at home again. The headaches alone drive me to insanity. I wanted 6pk abs again, but puking my toes up was not how I planned it!!
Does anyone else get sick like this?
July 14, 2017 at 10:43 pm
No nausea from IG (and Phenergan and I dont do well, but Zofran and Compazine are my friends when it does happen), but I sometimes get mild headaches/migraines. They slowed my infusion rate down a bit and told me to be especially hydrated (including with electrolyte enhancers and not just H2O) the day before, day of, and day after. I know another who gets a bag of fluids before they start their IG infusions otherwise they also get headaches.
July 15, 2017 at 6:14 pm
Amyozzy, do you take a couple of Benadryl and a tylenol before your IVIg infusion? Also, how fast do you receive it? Maybe slowing down the infusion rate might help. Good luck.
So 10 days out, I’m starting to feel subtle effects of my infusion. My physical strength has returned. I cut my gulley with a push mower this afternoon. At the end of June, I was huffing and puffing, and struggling cutting the gulley. Today, it was a cinch!
Also, I can walk down the stairs again like a normal person, instead of both feet on the same step….
So nothing earth shattering, as it feels more like an incremental boost in the right direction.
July 15, 2017 at 12:04 pm
I hydrate & get a bag of fluids every infusion & it still wipes me out! I’m hoping with just the 1 infusion, every other week, it won’t be so bad-this last round was brutal!!!
July 22, 2017 at 8:00 pm
Just another update. I guess my expectations are too high. I should be eternally grateful. I’m walking fairly well. I’m able to work and even play 9 holes of golf a week.
But, I still have pain/burning and stiffness in my feet and when I tire out, I get numbness in my lower legs and from my elbows to my fingertips.
I was really hoping the IVIg would have helped these areas to start healing by now, but I guess I’m just impatient.
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