I am not taing ths drug but am interested in this post. I had Guillain Barre syndrom approximately7 years ago. It resulted in total paralysis of my lower legs for a week. I was diagnosed with Crohns disease early last year although doctors think i have had it for approximatley three. I was wondering if you yourself have had these illnesses and which came first for you? I am currently writing a paper on the possible links between the two. I have found articles of Crohns possibly leadin onto Guillain Barre but not the oher way round. Sorry for the long winded reply! I realise you posted this oer a year ago but if you do happen to look at this again could you please get back to me
I had Guillain Barre Syndrome in 2005 which completely paralyzed me and then I recovered to about 90%. I've had Crohn's quite severely for my entire life and Remicade has been necessary for treating my Crohn's disease for the last five years or so. During this time I have had much better gut condition but have had worsening overall health with several herniated disc and related chronic pain
What you need to know is that each dose of Remicade dramatically improves the symptoms of my neurological pain. In the days after Remicade I can decrease the amount of pain killer I take and I have way more energy: my walking dramatically improves. Then after about three weeks my health slowly turns worse and I notice much more back pain and aching knees and other joints.
I get infused every 6 weeks. When I started Remicade I was every 8 weeks but my GI made it more frequent so that I would have more time with relief from my pain symptoms.
There have been times that I had to delay taking a dose due to signs of infection. I went about 9 weeks between doses recently and was in crippling pain and had no energy by the end. The change after my dose was night and day. I literally felt 100% better.
Prior to being diagnosed with a herniated disc I had some residual nerve pain, mostly tingling, leftover from the GBS. Over the years the tingling got worse until it was very painful. The Remicade helps with this too.
Remicade is absorbed instantly.
It's worth noting that there was almost no discussion of my GBS and the effect Remicade would have when I started. Now it is a key part of treating more than just Crohns.
I hope that is helpful info and I can provide more if you have specific questions.
Please contact us, we have the same case and my husband has still not regained feeling in his legs-we stopped Remicaide as we believe it was toxic shock poisioning from it per our neuro and 2nd opinions feedback. Seeking new Crohns treatment, but staying away from biologics for now. We'd love to hear your story.