Thank you Napali Coast. I'm scheduled for a Remicade infusion next Friday, so I am praying that will help. It's been very weird this week because after stopping the Doxi, the joint pain almost went away completely. The last 3 days I've felt so much better. Then I just started 6-MP, and boom, I woke up in the middle of the night with the joint pain back in my hand. I took two Tylenol and was finally able to get back to sleep. It's better this morning, but now I'm worried again. Maybe it's not the Doxi, and maybe it was just a coincidence that it stopped and it's really from Crohns. Or maybe it's 6-MP causing it now too. I'm going to stick with this program until I get back on Remicade and hope that helps. Of course I'm reading the forum and seeing that plenty of people get joint pain FROM Remicade. Arrrrg. Sometimes this forum scares me as much as it helps me.
Hello Aloe,
Waking up in the middle of the night, due to pain; is disheartening. Have you been on 6-MP prior? If so, were you tested before your start-up of 6-MP to see if you are able to take this drug? (there is also a test done by Premetheus for this called TPMT). 6-MP / Azathioprine is often combined with Remicade. Some believe that it aides the Remicade treatment and possibly aides in not allowing Remicade antibodies to form. So….it may be a good strategy by your doctor knowing that you've been off your infusion schedule. If its the 6-MP, your doctor may want to reduce the dose to see if that will help and then increase the dosage - if it does. Unfortunately, I had a reaction to Imuran and was not able to take it prior to beginning Remicade in 2013.
Is there any chance that you can change your Friday appointment to an earlier date? That may be so helpful for you. I personally have received Remicade every 4 weeks and have felt incredible. However, similar to you, I needed to delay my last infusion due to a upper respiratory infection (believed to be bronchitis). My PCP prescribed back-to-back Z-Packs (2) and a Ventolin Inhaler. After 10 long weeks of waiting (the last 4 weeks enduring transient joint pain), I just received my infusion this past Tuesday morn 3/11/14. In fact, just hours prior to writing my first post on this forum; to you. Within hours of this infusion, I felt robust and my joint pain was gone - it was amazing!
However, later that Tuesday, I had received the results from my Prometheus test taken just 5 days prior, indicating I had a zero trough (no remicade in my system) and… I had surprisingly built-up low level antibodies to the Remicade. When I received word from my doctor with this info… I informed him I felt wonderful - joint pain free. Like me, he was very pleased and stated that we may need to re-infuse within the next few weeks - a wait and see.
Stunningly, within 7 hours of my infusion, my hands began to slightly stiffen. By nights end… my left hand, left elbow and ankles began to ache. The following morning (Wednesday), I was still in experiencing joint pain - I was amazed in how quickly my body turned. On Thursday, my body started to respond back to my Remicade treatment.
As of today, Friday, my pain has subsided and I feel as though my body is trying to accept / embrace the Remicade - back to my previous success level.
Again, today I bounced back - to about a 95% pain free level. What a carnival ride - I just pray my body was simply reacting to the delayed process in maintaining my infusion regiment and that the Remicade was now battling my low level antibodies that had formed.
In closing, I hope my experience(s), especially my last few days are helpful. However, whichever drug(s) our bodies respond to /embrace - we will ultimately be victorious - because we have God on our side.
