I appreciate all of your words of advice on my last post. I saw my neurologist yesterday and she thinks that I've been so exhausted and weak due to a relapse. I have been treating my CIDP for 1.5 years now and have yet to experience full remission so I am feeling this set back hard. She believes the IVIG was masking my symptoms well, thus why we started tapering and it was more than likely too soon which spurred the relapse. My hands and feet were markedly weaker than they were a few months ago and my twitching has gotten much worse.
My IVIG frequency and dosage will be increased so I will be getting my next round in two weeks. Frustrated to say the least but I sincerely hope this helps. We will gauge my progress in october (right after my 30th birthday, HBD to me) and discuss next steps which could include plasma exchange if I am still in relapse mode. I hope that isn't the case so I can stay out of the hospital and avoid a central line!
Trying to stay positive and hope for some relief from my symptoms! Thanks to everyone for being an ear!
I hope that your last round of IVIG went really, really well. I haven't been on this forum for a while, but I checked in today and saw your posts and your vlog on youtube (it touched my heart and I can definitely relate to you!). I was diagnosed in april of 2014 (I was 24 years old at that time) and just like you, I've been on IVIG since then. I sent you a friend request :) I would love for us to connect! Take care, Kelly! /Sarah in Sweden
I agree with mdolich. The word "remission" generally has little meaning in peripheral neuropathy. IVIg is (generally) about stopping things getting worse by controlling the demylination action, which if it continues gets to axon loss and that is considered irreversible with current treatments. The real test is working out the appropriate dose to do that for each case. If you think you get "worse" at some point in the treatment cycle and the next dose gets you "better" - this is really very hard to assess as it usually happens slowly - then you are probably at the optimum treatment. Any less - could be more permanent damage, any more is just waste.
Your doc sounds like they are on the ball. I note you mention plasma exchange. That does indicate to me that they might suspect some associated condition. It may be that they are just considering alternatives if the new IVIg does not help as they hope - a good doc will always consider the alternatives and think ahead.
So glad your dosage of IVIG seems to be efficatious.
Im currently waiting for the canula to be put into my vein for my 92 nd 4 weekly treatment of 45mgs which i will have for the rest of my life.8 years of pretty good life so far for me.
Thanks for all of the support & replies! I just completed my IVIG yesterday after two days. I get 300ml of Gammagaurd per day currently (with a concurrent saline 500ml each day which helps A LOT with IVIG side effects) and I've never tried another type. I had a five day load dose in December of 2013, then I did three rounds of 4 day infusions every four weeks, which eventually went down to two days at every four weeks. As soon as we tried out six weeks I felt the infusion wearing off at week four through week six and felt AWFUL. Flu like and extreme exhaustion. I tried to push through thinking it was necessary to taper but I was remiss in doing so since this is what more than likely spurred the relapse..the too quick taper.
I woke up feeling pretty yucky today which stinks but I know I need to give it time. In the past I have woken up on even just day two feeling notably better but I realize my relapse has weakened my body and made it more difficult for the IVIG to be as effective as it normally is. Hopefully five weeks is the sweet spot or else I'm back to four. I'm hoping to be back to work soon but luckily they are incredibly understanding of my condition and my treatments and are willing to let me work from home during my infusions and maintain my current schedule. I'm just ready to feel less lousy!
The IVIG takes time to work.Initially,from my 1st 5 days getting soaked in IVIG,I had 4 weekly top-ups.It took a couple of weeks after the 2nd 4 weekly top up before I had a dramatic recovery-about 75-80%.
I have just finished my 92nd IVIG and am planning a celebration when I reach 100.One guy I see regularly at the hospital has been on it 15 years and he is coming up to 195!