cer100
Your Replies
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October 2, 2017 at 1:27 am
So I went with the new neurologist and now get IVIg treatments every week.
If you dont mind me asking, how much do you get weekly? Im at 2 weeks but Dr seems hesitant to go more frequently or higher doses.
October 1, 2017 at 6:34 pm. You also have to be able to document your medical condition. It may be a little too early for you.
To the OP, as you have no DX nor started TX, I agree with GH it may be too early. Not necessarily for this condition, but I have known some that required multiple applications, appeals, lawyers, etc. On the other hand, others submitted info themselves and were approved on the first attempt.
Best of luck.
September 27, 2017 at 8:35 pmIf you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.
Are you referring to side effects or effectiveness?
The effectiveness.
First I’ve heard of that. Any references discussing? As I have tolerated well, Ive had them bump up my infusion rates
September 27, 2017 at 12:28 amIf you go the IVIg route, make sure to have the serum delivered slowly. It makes all the difference in the world.
Are you referring to side effects or effectiveness?
September 24, 2017 at 9:37 pmIt is possible to recover from CIDP, but in the meantime, you need treatment and the earlier the better. A week and a half is a long time to wait if you are deteriorating daily.
Assuming its CIDP, all I can say there is hope.
These…but getting right Dr and right treatment seems to be key.
There is much not known about this disease and apparently a lot of trial and error unfortunately.
Im worse than when I started, but still working on it and staying as positive as I can
September 24, 2017 at 9:27 pmwhy do you need a second opinion?
It’s only my opinon, but any rare, complex disease is worthy of a second opinion to educate yourself and understand options to figure what is right for you. If your current Dr has seen 50 patients and the 2nd opinion has seen 500, isn’t it worth the effort?
but yes, talk to your current neuro while awaiting consultation
September 21, 2017 at 4:35 pmBut it is known from studies that PE generally leads to better recovery.
Would you happen to have any links or a location to search for? What I had found indicated about the same but maybe it was an old study.
September 19, 2017 at 10:59 pmWont let me edit post…
https://forum.gbs-cidp.org/forums/topic/plasma-exchange-time-to-improvement/
September 19, 2017 at 10:49 pmI 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/
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.
