Ivig vs. PE
September 19, 2017 at 8:29 pm
Hi every one;
Im new here.I was diagnosed with immune-mediated neuropathy .
My neurologist started ivig for three times with no improvments
I dont know
How long it takes to know if its the good treatment ?
My doctor never discuss PE with me ..how fast do u notice the recovery ?
Im suffering from numbness pins and needles in both hands and feet
Im asking whether ivig needs more time or its enough to say its not useful for me?
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.
September 19, 2017 at 10:59 pm
Wont let me edit post…
September 20, 2017 at 2:08 pm
Response to treatment varies. Your neurologist must adjust your treatments to try to find what is most effective for your particular case.
September 20, 2017 at 2:34 pm
Like many, IVIG only provided short term benefit for me. As you will see, each case responds differently to the various treatments. I was on prednisone for several years, then IVIG, then plasma exchanges which proved most beneficial for me. My doctor has, over the years used a combination of treatments to keep the progression under control, so your doctor may have to look at this possibility for you should the IVIG not help. Hope you get the right combination
September 20, 2017 at 5:22 pm
Thank you all for your valuable responds im really going to read deeply about PE choice.
Well; i understand that it varies from one to one .
But im not sure how physically u could decide that its usful?
or i have to wait more times?
Sorry for asking many questions
I need more explanation from u Whats the big difference have u noticed?
September 21, 2017 at 1:58 am
I had two loading doses (5-day regimen) of IvIg, but my strength continued to decline. Then I was switched to PE. I had nine treatments over a three-week period. I started to improve (from complete paralysis below the neck) after about seven. I never had IvIg again. In recovery I was given prednisone and mycophenolate mofetil.
I believe that the PE treatments were the key, but it is impossible to prove anything from a single case. Maybe I would have recovered without it. But it is known from studies that PE generally leads to better recovery.
September 21, 2017 at 11:19 am
When I switched to plasma exchange my strength, balance and endurance improved very quickly. Initially, I was given five consecutive days of PE, then weekly until I was back to pre-decline levels then tapered down to twice a month, then monthly for several months, then stopped. My CIDP is relapsing, which is why I have been getting PE over the years (my dx was 1996). It has been the one treatment that has been able to manage my symptoms. I have been taking 2000 mg of mycophenolate mofetil daily for many years. My positive experience with PE may not be the same for others. I get 1000 mg IV prednisone after each PE.
The other measure to know if the treatments are helping is to compare nerve conduction studies. Once an initial study is done, this becomes the benchmark that future studies can be compared to which will show if there is any reduction in nerve conduction or if there is further damage to the nerves.
September 21, 2017 at 4:35 pm
But 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 21, 2017 at 5:37 pm
I should have written “better recovery than without treatment.” Both IvIg and PE can improve recovery and recovery is generally better with earlier treatment. Nothing is guaranteed, however. Every case is individual.
An excellent book on the subject is Guillain-Barré Syndrome from diagnosis to recovery by Parry and Steinberg. This is the essential handbook for anyone with GBS or CIDP.
September 26, 2017 at 7:40 am
I had GBS 1974, all that was available for treatment. PT & OT 8 years all through school & in house. I never ran or regained calf muscle. But I did well from paralysis from neck down. Resdiual weakness in lower extremities. Good luck!
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