Remicade - I AM STILL IN PAIN!
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Remicade - I AM STILL IN PAIN!
| Mon, 04-25-2005 - 10:16am |
I started my Remicade finally after waiting 6 months for insurance approval. I had my second infusion last Monday. Just to update anyone who reads this, I have Crohn's and arthritis including ankylosing spondylitis. For two days I had no lower back pain but had all the rest as usual. Then it all was back with a vengeance. I wake up with pain in hands, knees, hips, back, legs, and have many BM's per day (7-10).

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Hi Donna,
Just to add my 2 cents here. It took me a few Remicade infusions for me to feel better.
I don't know how many infusions you have had. But
((((((((((( Donna ))))))))))))), I am truly sorry you're still in such horrible pain after the two Remicade infusions.
Molly
HI there,
You always make me feel better somehow and I am sure others here feel the same way. Even though I feel awful I feel better in my mind so I am half-way there :-)
Felt awful again today, it seems I am worse instead of better. But tomorrow my doc will be in and I already left a voice mail message on the nurse's phone. They are great and will respond right away. I just wish I could get another infusion now.
I will think of you all while I am on the beach in Mexico. I will not think of work and that alone, just the relief from stress will help a lot.
Well, that is encouraging to hear. I have only had two infusions. But so far neither have helped and I am wondering if I am maybe not getting enough vials since I am only getting 4 or 5 I think. I will find out when I talk to my doc tomorrow. I do hope you are right and that eventually this will help me.
I will enjoy my vacation in the sun and on the beach with my son and his family. It will be the first time my 6 year old grandson has been to Mexico. He is half Mexican so it will be good for him to see a whole country of people like him and how beautiful the country is.
I am going to drink a margarita and hope for the best.
Hi Donna,
Have a margarita for me. I know they start you on a low dose of Remicade. They will work it up depending on the need for the dose change,and whether or not you have any side effects from it. I was always itchy when I went in for mine, a injection of Benedryl took care of that.
I don`t want to scare you but I will tell you that when I went on my trip the end of Feb. I made sure I got my remicade just befor I left. However I went into a big old flare while on vaca and it took me a while to get it settled down after I got back. So maybe Molly is riet bout you making sure you have extra pred to take.I would go again in a minute . Just now I know I have to plan for flares.
I hope you`ll be ok. But I know you`ll enjoy no matter what. Hang in there Donna and do give the remicade more time.But I think like me you have to remember no matter what we will never be 100% pain free.Thos commercials and magazine adds paint a too rosy picture.
Hugs to you and do have a ton of fun
Bev
I guess I expected to much, yes, but I didn't expect to feel worse for sure.
Okay, I am thinking I need a higher does of prednisone for a while and I hate to say that, but Molly suggested that and it has been rattling around in my head, even though I hate that da%#ed drug. I am two sizes larger than when I started it last fall. But I was not hurting like this, for sure. I was on 20mg pred for most of the 7 months or so I have been on it this time, and then got down to 10mg and was trying to do 5mg. I think now is not a good time to try that.
Molly
Molly
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