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Neuropathy cause by the infusion drug Remicade
Hello folks! I'm brand new to the forums. Here's my story...
Back in 2004 I almost died from a ruptured colon. Had the colostomy bag for 7 months then the resection surgery to put me back to normal. I was living in Florida at the time. Not many good memories from FL. In 2010 I had severe digestive issues and was diagnosed with ulcerative colitis and was on medication that kept me mostly normal till April 2020 just after the bs lockdown. I came out of remission and was in a horrible flare. I saw a GI Dr and decided to try blood infusion drugs and had severe side effects... You know the fast talking part of rambling in the commercials. Lucky me...I was in the 2-5% that have side effects. Once I got into the Mayo Clinic my new Dr put me back on the pills (mesalamine) I was originally taking and been okay digestivewise since (back in remission as of 11/27/24 but the side effects are permanent.
I have Neuropathy in my feet, chronic joint pain, fatigue and the worst tinnitus ever. I used up all FMLA, went on long term disability till I was approved for SSA this past February. Whew!
I was a supervisor at a great company since Sept 2008 when I moved to AZ. I also played drums in 2 bands up till I got sick...
At my most recent video meeting with my Mayo Clinic pharmacist I told him my story. Get this! He confirmed that about 50% of patients have side effects from Remicade. That was last August.
Has anyone here in the forums been through this?
I've tried accupuncture and felt good during the treatments but did achieve any lasting improvement. I'm currently taking Lyrica, desipramine (and) tylenol 3 with codeine when the pain spikes are strong just so I can get some sleep.
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hello watcher7t,
welcome to our small, large family of people with neuropathy. And yes we all have our own personal stories with this condition as we each experience a variety of symptoms diferent from others and each responds differently to different treatments including medications, therapies, etc... I have recently been diagnosed and confirmed with as having large fiber peripheral neuropathy and bothe cervical and lumbar radiculopthy after over ayear from intitial onset and so many doctors and medications. I belive we've all reached the conclusion that there are no concrete causes for the condition and so far no cure. All treatments are aimed at slowing down the progression of the condition and to help cope with it.
I have also used up all my FMLA. My position at work was opened to be filled and am now on short term disability till May 23rd with the knowledge of absolutely knowing nothing of what will happen after that. The most important thing is dealing with the psychological aspect of going through the condition. Hopefully, unlike me, you have a good support group built around you to help you.
Good luck and take care,
gus
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3 ReactionsThatnks Gus for responding. Yes it is amazing how these things attack each of us in different ways. I am in an ulcerative colitis group on FB and try and help the young ones diagnosed that join in and just scared out of their minds because of how life altering UC is. It rips your heart out seeing the stories of kids as you as infants that are diagnosed with UC or Chron's. There's so much toxic crap in our food supply these days and personally I think it has a lot to do with people getting digestive diseases.
I was approved for SSA on my first application thanks to having two different Neurologists had the same diagnosis and Physician statements I sent in. All my Doctors are now with Mayo and have been the best! I hope you have the same outcome too.
Take care too!
Brian
Hello Brian,
Thank you for your reply. Our condition is also hell and I am 67 years old and have no idea of what to go for. Between dealing with the condition all alone and the return to work prospects if possible is taking its toll on me. I am not only in the tingling and numbness territory but have also crossed it into the pain and losing my balance often territories. And each symptoms is a territory in itself.
As for sort or long term disability, I'm waiting for the new neurologist to find out the statements she will put out after confirming my diagnoses (neuropathy and radiculopathy). Unkown to all, after two hand and one cervical surgery, my right arm is about to fall off from the pectoralis chest muscle, up to the neck, through the biceps muscle and down to the hand. My right hand was deemed permanently disabled and dysfunctional after having had a 3-hour functional capacity test. So as you can see, I have a lot on my plate with which I am dealing all alone. It's quite difficult to say the least.
Take care and keep up your good work helping others with their UC condition. This will add meaning to your life and will also help you in the long run.
gus