Background info:
My poor hubby! He was diagnosed with Crohn's Disease in high school. He had an emergancy resectioning done then. He had a quack of a doctor for a long time who chose to throw him on steroids and drugs but never really listened to my husband. When I FINALLY convinced him to go see another doctor (that I LOVE, BTW, he is FANTASTIC!) about 3 years ago he needed another resectioning becuase he was such a mess inside. What was supposed to be laproscopic surgery to remove about 4 inches (we hoped - he was such a mes they couldn't really do a colonoscopy fully since he was so swollen inside) ended up with a 10 cut, removing 18 inches of intestine and a LONG recovery. He was about 35 at that time, so he didn't "bounce back" as easily as before.
Current situation:
He is on Remicade now. He gets an infusion every 2 months. He had been asking his former doctor about it for years and he ignored him, but the new doctor listened and he is on it. He had had wonderful results for the most part. No major flare ups. He still watches what he eats, no whole grains, no rice, no corn, no nuts, no seeds.
The problem:
While the Remicade has been wonderful he gets SUCH major joint pain from it. His hips will give out and he just aches al over. Today he said that if he even touches his hip area it feels like it is on fire. He really doesn't want to go off of the meds, because going through this every 2 months is better than being in such constant pain as he was before.
So...... My question is (finally, right?) if you or someone you know is on Remicade, do you have something that works for you for the joint pain? He said that the typical tylonol, ibuprofin, etc, don't even touch it. He has had vicodin before, but woudl prefer to not be on that. Hot showers seem to help a little, but it is only while he is in there, of course.
Thank you in advance for your help and support!
ask your doctor about a lidocaine patch or acitve muscle rub.
If hot showers help - you can purchase a hydroculator (moist heating pad) and apply it to areas of pain for 20 minutes at a time - do not apply heat longer than 20 minutes or it will conteract the effects.
Remicade is also used to treat RA my mom took it for that reason, and had to stop. Because even though it slowed the joint damage she was on so many pain pills from joint pains. She said the only thing that kinda helped was the Biofreeze, I know massage envy sells it. Sorry I don't have a whole lot of answers, hope your hubby finds something to help! I know how difficult it is to see your love one in pain my husband has ulcerative colitist
Have you ever visitied the website, inspire.com? You can sign up and "talk" to people or family memebers of people with different diseases, it is much like this site, but you get and share info with people with the specific disease/illness that you or a family member may be dealing with. It has helped meout a great deal in learning more about my own autoimmune disease. Good luck to you!
Fish oil...a good one, like from Nordic Naturals or Spectrum. It's a natural anti-inflammatory and it might just work better than the Remicade that is destroying his body....and liver....slowly. Take the fish oil, maybe 2 daily and increase it the days he has the pain. I'd also support the liver with milk thistle, but that's me.
Also, broccoli, cabbage and iceberg lettuce can be major culprits. I had a friend who would eat beans and THAT was what was setting her off. Most of my friends diagnosed with Crohn's have changed their diets and used PB8 and some used aloe vera as well to stop the reactions. One of my friends had an issue with JUST corn, but she had to stop corn syrup, corn meal, etc and has never had an issue. Another friend went back to his doc 3 years later and there was NO scarring in his intestines. His doc said that if he hadn't known better, he would have never known he had previously diagnosed him with Crohn's.
NOT to scare you, but rather inform you, a friend of mine was on it for 10 years and her liver couldn't handle it anymore. She ended up with liver cancer and died this past year at 37. Could have been more than the Remicade, of course, but make sure you know the warnings:
REMICADE IV WARNINGS
This medication can decrease your body's ability to fight an infection. This effect can lead to very serious (possibly fatal) infections (e.g., fungal infections, bacterial infections including tuberculosis).
The immune system is also important in preventing and controlling cancer. Though it is very unlikely to happen, there is a risk (especially in children/teens/young adults) of developing cancer (such as lymphoma, skin) due to this medication or due to your medical condition.
In patients using infliximab along with azathioprine or 6-mercaptopurine for the treatment of Crohn's disease, there have been rare reports of an extremely rare, often fatal cancer (hepatosplenic T-cell lymphoma).
I know quite a few people with Crohn's and others who have had bowel resections for similar conditions (e.g. ulcerative colitis). There is SO MUCH that can be done to eliminate the swelling and the reaction, so that the doctor can take him off the meds. If you'd like to talk with people who have been there, let me know. NO conflict with medications in the short run.
