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Hi,
 
I need some help here. I have seroneg RA. Had my first Remicade treatment 10 days ago. I had resolution of pain in about 36 hrs. I was soooo happy.
 
Monday I woke up with my shoulders hurting. Thru the day it got worse to were I couldnt lift my arms or hardly move them.
 
Tuesday morning I added now my right hip, and jaw of all things. The pain today is a 8 or 9 out of 10. I havent slept in 2 nights. I am taking Vicodin and Advil with little to no relief.
 
Is this RA? I never have been incapacitated like this before. I mostly had finger and wrist and ankle involvement.
 
Could it be something else?
 
Have any of you had to go to the ER for pain?
 
Is there anything else that can be done if it is RA?
 
Please respond, I am desperate and in major pain.
 
I didnt know if this warrents a call to the Dr. because I dont know if there is anything he could do for me. I would appreciate any advice you all could give me.
 
 
Sarcoidosis, hypothyroid, seroneg Ra
failed MTX, gold, Enbrel, Plaquinil etc. 
 
Thanks, Barb

Hi Barb, Im really sorry you are in so much pain. I'm also seroneg RA amd have failed a number of meds. It sounds as if you are having a flare up and yes i'd say it warrants a call to your doctor. It does take a while for the meds to work, there a few people on here who have remicade infusion so hang in there and some more will answer your post. Meanwhile try taking a warm bath or some hot and cold compresses on the worse joints affected. Can you lay down and rest with a good book or the t.v. Your doctor might recommend a cortisone injection until the remicade kicks in. Let us know how things turn out.

Take care

Lisa

It does sound like a flare. Let the RD deal with it. The remicaid infusions do take time to work. I have had three, and after the first two I felt a big improvement but after the last one last week, I am in a huge flare as well and had to resort to some steroids.  The amount of pain you are describing does warrant a call to the rheumy and if that doesn't get you anywhere, a trip to the er for some much needed pain relief. hi barbs  sorry to see you are in such pain.. i have never been to the er for pain.
but i have called the rheumatology hospital to see if it ok to up my pred
i hope you find releif soon..


Update
 
I spoke to the dr office. 
He said he would not use steroids again since I am pre diabetic and had to go on insulin the last time I had a flare.  He said it can take 3 months for Remicade to kick in.........that is an eternity when you are in this kind of pain. I am mad and frustrated......
 
I cannot raise my arms to drive or do anything..... I cant chew etc.
 
I hate RA!
 
Barb
Barbs, I can't advise you since I have no experience with Remicade, but I wanted to tell you how sorry I am for the pain you're in.  I hope you get the relief you need.  Many have done very well on Remicade and I'm hoping it's just a matter of a bit more time before you feel better.  I understand your frustration.  When you hurt, you want it to stop YESTERDAY.  Hang in there a while longer and keep posting so we can talk you through it.  Barb.  I sure can sympathize with you, shoulders are the worst!  You can't lay down and they have to stay in the exact right posistion and even then they just keep hurting.  You can hardly do anything, from drink a cup of coffee, to brush your teeth to button your pants or take off your jacket..  I hope you get over it soon.  I really feel for you.Barb, did he prescribe anything for the pain?  If he won't call and get an appt. with your primary care doctor.  It can take up to 3 months for Remicade to kick in.  I was on Remicade for over a year before I went backwards and retried Humira.  Take care, I think we've all been there.  LindyBarb, I'm sorry you're in so much pain.  I agree with LinB that you need to have some pain meds while you're waiting for the Remicade to kick in. Wishing you better days.
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