cer100
Your Replies
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September 19, 2017 at 10:49 pm
I saw improvements within 3 days of my first IVIG load infusion, but those improvements have not lasted under maintenance+ levels. Your response may also depend on what your dosage is and how often you are getting it.
Have not had PE but under discussion with Neuro. There are a couple of other recent PE posts which will give you more information than I can.
https://forum.gbs-cidp.org/forums/topic/starting-plasmapheresis-on-monday-have-questions/
https://forum.gbs-cidp.org/forums/topic/please-educate-me-on-plasmapheresis/
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September 14, 2017 at 6:20 pmMy PE questions thread is here https://forum.gbs-cidp.org/topic/please-educate-me-on-plasmapheresis
September 14, 2017 at 6:08 pmI need to go re-read the port posts. Looks like PE is in my future but I am really not wanting a port although I can’t fully rationally explain my resistance to one…
September 12, 2017 at 8:31 pmFYI, new spam posts today reported via tech support contact form.
September 11, 2017 at 10:11 pmOff topic question for the OP
She also wants me to continue the plasma exchanges every three weeks with the 1,000 mg Iv solumedrol.
My neuro wants to talk PE, but it sounded like a 2 week in patient stay with future repeating procedures. On your 3 week PE schedule is that in patient and how long does it usually take?
September 11, 2017 at 5:10 pmA second opinion is never a bad thing (except perhaps to your wallet) assuming you can find a qualified medical professional.
Are you on steroids at all? When my prednisone goes over 10 mg/day, my vision gets blurry and I need drops for glacoma.
I dont think they are common but there are Neuro-Ophthalmologists who I assume would be better to address the concerns.
September 11, 2017 at 4:57 pmInteresting to read of your improvements with Enbrel. I was on it for other reasons and they took me off once CIDP DX since there were concerns about it causing neuro disorders.
September 9, 2017 at 9:25 pmThanks
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.
