I can't have Remicade, Humira or Cemzia because of the *RARE* side effects of all 3

   The Dr said NOPE. I don't want  to take a chance of your body going through anymore side effects to your Nervous system. So *crossing Fingers* we hope that meds I take which will keep any flare ups away. Though steroids that I was given in the hospital for 10 days didn't do anything at all.  But i'm back on them now. If this doesn't work I will have to have surgery. thats when I was given my 1st Remicade. Worked WONDERS!!!! then it was all down hill from there. 

The 2nd treatment of Remicade (sept 1st 2009) totally attacked my nervous system. From the tips pf my toes to the top of my head.  By the time I pieced everything together, I had, gone ahead with the 3rd treament of Remicade. The attack of my nervous system equals ***** numbness, tingling feelings, loss of motor function in my hands and fingers. A dropped right ankle, messed up my total knee replacement (March 2009), messed up my rotator cuff and bicep muscle surgeries (June 2009) The pain so bad in my fingers,  palms and right foot, that even 30mgs of Oxycodone 2 X's a day doesn't even take away more then 50% of the pain. ****I do not have control over my right ankle. Its like there is no support. As in tendons etc holding it together. my ankle constantly gets twisted.

The more I try to do with my hands and fingers the more they hurt. If I walk more then 5 minutes straight, the pain in my totally replaced knee is like H E double hockey sticks. My right foot is like dead weight. I basically drag it. My knee makes more sounds now then a Marching band does!

I can't sit in a chair, sit in a car, with my knee bent for more then 5 minutes, because that makes the pain in my right knee, the top part of my lower leg, and my toes, go bonkers with more numbness and tingling

So my Neurologist Dr  told me that besides the Fribro that he told me about 2 weeks ago, I now have neuropothy(sp). Don't even think about touching the skin on certain areas on my body.

There is a 95% chance that I will never regain any of the motor functions that i've lost. That none of the tingling and numbness will ever go away.

What makes me so   is that for 35 years i've been a florist, a landscaper, a stained glass artist and a jewlery maker. Now I can not do any of that. Takes me forever to type so I basically look at the topics in the forums and see if anyone brings up this about their treatments of Remicade.

I am so sorry you're having such a rough patch. From what I've read about the biologics, even the neurological side effects should go away once the medication has been stopped . . . not right away perhaps, but over time, they should diminish, if not completely go away as your nerves slowly repair themselves. Nerves do regenerate, just not as fast as muscle or tissue. My husband had a drop foot from damage to the peroneal nerve bundle last year from malnutrition (though we did suspect remicade), and he started taking a lot of vitamins to help vitalize nerve regeneration. In particular he took B-12, Folic Acid, Super B Complex, Choline, Inositol, Pantothenic Acid (those 3 are the precursors to acetylcholine, a neutrotransmitter, in both the peripheral and central nervous systems) and Ginkgo Biloba with Vinpocetine (to boost blood flow to the brain - which you shouldn't take if you are on a blood thinner or MAOI). Of course before starting on any of these vitamins, talk to your doctor to make sure that none of these will affect you adversely.

Don't give up hope - I don't believe the 95% chance that you've permanently lost nerve function is true. I think it takes time, maybe another 6 months before you see tangible improvement. But in the meantime, hang in there! With my husband's foot, instead of looking for improvement every day, we looked for improvement every month. At the end of 8 months, he'd regained about 75% of his function, and now it's close to 90%.

Physical therapy, and nerve stimulation with TENS units also helped my husband. Do discuss this with your doctor. My husband's case was not remicade related, but nerve damage can repair itself. My husband is living proof of that - but unlike muscle and tissue, nerves take much longer.

(((Hugs))) Don't give up hope . . . you will hopefully see some good improvement in the months to come. Push your doctors to discuss how you can get back on your feet faster - with PT, nerve stims etc, and have them monitor you (with function tests, and maybe a nerve conduction study every now and again) to give you positive feedback to make sure you're moving in the right direction.

PV

Sally,


I'm so sorry this happened to you. If regular pain killers don't work, a neurologist may be able to prescribe something for nerve pain. That has helped me when I needed it in the past.

Hang in there and lean on the people here as much as you feel the need.

I hope everything returns to normal for you.

Good luck!!