cer100
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September 9, 2017 at 9:25 pm
Thanks
Dr keeps throwing Prednisone changes in when the IG quits being as effective, but I cant tell it helps a lot and I have side effects from sleep issues, vision blurring, eye pressure, blood sugar (now diabetes), etc. Ive been at rather high doses at times e.g 60mg+ daily for long periods.
.Started loading IG dose 2gm/kg (in-patient 5 days) followed by 1 gm/kg at 4 weeks.
.6-8 months later moved to 2 gm/kg at 4 weeks.
.3-4 months later to 1 gm/kg at 2 weeks and then
.3-4 months later to 1.5 gm/kg at 2 weeks.
.3 months later its not holding now much beyond week one.Dr had mentioned IG brand switch once before but last mentioned PlEx although after research it doesnt sound as easy and straightforward as described plus a major inconvenience repeating inpatient stays 2 weeks at a time. Id rather try IG brand switch or higher dosage hence my question.
I also cant find strong indications the PlEx will do better than IG but will discuss with Dr.
September 8, 2017 at 11:59 pmI am signed up for the conference and hope to be able to attend. I heard Dr Allen does (or at least did) partial time at NW but one person I spoke with was unable to get in to see him. Am curious to see how this conference goes but getting more local contacts would be great.
Im not a FB user for multiple reasons, but will take a look at link and do further exploration there.
Hopefully will get some more feedback to the post too.
September 8, 2017 at 10:48 pmThanks. No centers of excellence in Chicago area in spite of positive Neurology practice reports at Northwestern. I think Mayo was closest CoE last I checked, but nearest options were in MN, KS, OH and TN. Travel is not easy these days.
More info on FB group?
September 2, 2017 at 10:13 pmThanks GH. Wish I had that before when seeing my last two PTs.
August 29, 2017 at 1:36 pmHmm, I wonder if there is a way for us to share our contact information without posting it on here? I’d rather take this conversation offline if we can, especially related to discussing providers.
Im new here but recently looked for a way to private message someone. Found a post that indicated PM functions were disabled with last board update as “they” did not feel that ability was relevant to the board’s purpose.
August 24, 2017 at 6:00 pmI am pretty sure one of the other patients I chat with at the infusion center gets a bag of saline before starting their Gammagard
August 17, 2017 at 8:36 pmEvery 2 weeks did “level” me out more when I was having severe drop off on last week of a 4 week cycle. Unfortunately, it hasnt seemed to get me back to that next level, yet.
Good Luck.
August 15, 2017 at 7:06 pmI am wondering if I should get another opinion. My neurologist seems to be very knowledgeable about GBS. He told me he has two other patients currently
A second opinion is a good idea IMO for a rare and complex condition. It certainly isnt going to hurt and may provide a different perspective on some things. Before selecting, ask the office some questions like experience with your condition and how many current patients they have…the more the better.
August 14, 2017 at 10:16 pmI take vitamins, but did so “before”.
Havent really tried any natural alternatives but am looking at anti inflammatory diets.
Of the few others Ive met with this most had EMGs reflecting abnormal results, but there doesnt seem to be a definitive way to determine…a lot of what it isnt instead of what it is.
August 14, 2017 at 5:17 pmFull blown symptoms out of nowhere late in 2015 although looking back there were indications like changes when riding exercise bike, small balance things, crawly skin sensations, some mild tingly in fingers etc. which Drs dismissed as those weird things that bodies do.
DXed in early 2016. Not doing as good as I was the first 6 months after IG TX started, better than I was 6 months ago with significant relapse over 4 days, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.
Im a tad over 18 months in and it took multiple neurologists to get a DX. Id suggest finding one with some background/experience in neuromuscular disorders.
So I hope this is still a recovery phase because if its my new normal, its going to stink. Legs are weak and unable to generate power like used to, arms too. Some gross and fine motor skills are back, but others are still not completely right.
Each 6 months or so IG seems to lose effectiveness and we shorten time frames between or bump up the dose. Can only do so much of that though.
August 14, 2017 at 4:57 pmspeaking of being wiped out and overdoing it, the main forum has intesting thread on gbs/cidp fatigue
https://forum.gbs-cidp.org/forums/topic/fatigue-for-gbs-cidp-others/
August 14, 2017 at 12:02 amU turns? Feels more like a 360 degree spin out on ice in the middle of a snow storm. LOL
Saw improvements on day 3 of IVIG load dose which was around Feb last year. Infusions every 4 weeks until July/Aug (iirc) of that year and it wasn’t lasting as well by end of wk3/start of wk 4. Bumped dose and did OK until Jan/Feb and saw a major relapse in just 3-4 days at end of cycle. More prednisone (yuk) and switched to 2 week cycle. Did OK until June roughly and issues again so now it’s another upped dose of IVIG every 2 weeks.
Not as good as I was the first 6 months, better than I was 6 months ago, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.
Best of luck to you.
August 13, 2017 at 11:45 pmCIDP DX for me. My legs (hips, knees,thighs, calves) are worst and where it started with extreme weakness and progressed with neuropathy. Before it went full blown I had noticed time on exercise bike was shorter and difficult but did not know why.
Not hypermobile though at joints (at least as much as I understand the term joint laxity), if anything the opposite, but a similar issue of smaller movements needed much of the time. When things are really bad I get what I term “floppy foot”…not quit sure if its “drop foot” Ive read about.
In 4 weeks my walking ability deteriorated immensely and by 7-8 I went to bed each night unsure if I would be paralyzed in the morning. Got put on steroids while still doing testing which seemed to slow things down, but saw no real improvement until put on IVIG.
They first thought I had GBS, but after crossing the 8 week mark and getting multiple EMGs, MRIs of brain and spine, and an LP, they changed their minds to CIDP.
August 11, 2017 at 8:02 pmI think you’re reasonably safe since you have had it before and have a sense for any prior reactions. AFAIK, almost all now come premixed so its a matter of inserting IV and hanging the bottle, monitoring you and changing bottles as needed.
I get mine at infusion center. I know a couple of people getting it at home. They don’t always get the same nurse and get along better with some than others. Of course they are in your home for a few hours and Im not one to have a stranger around in my home unobserved. And it also feels like I perhaps would have the need to be a host while they are there.
Although more convenient for napping, reading, or just wandering around, it is not for me at this time.
August 10, 2017 at 6:23 pmAs far as I know, whatever info they derived from my Lumbar Puncture / Cerebral spinal fluid collection, it did not go into the IG dosing consideration.
