Remicade - I AM STILL IN PAIN!

iVillage Member
Registered: 08-21-2004
Remicade - I AM STILL IN PAIN!
28
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).

Donna

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Avatar for cla3a
iVillage Member
Registered: 03-25-2003
Mon, 04-25-2005 - 12:42pm

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

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iVillage Member
Registered: 11-03-2003
Mon, 04-25-2005 - 1:19pm

((((((((((( Donna ))))))))))))), I am truly sorry you're still in such horrible pain after the two Remicade infusions.

Molly

iVillage Member
Registered: 08-21-2004
Mon, 04-25-2005 - 8:56pm

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.


Donna
Donna
iVillage Member
Registered: 08-21-2004
Mon, 04-25-2005 - 9:00pm

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.


Donna
Donna
Avatar for cla3a
iVillage Member
Registered: 03-25-2003
Tue, 04-26-2005 - 3:56am

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.

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Avatar for beviej
iVillage Member
Registered: 03-25-2003
Tue, 04-26-2005 - 6:58am
((((((((((Donna))))))))) I started remicade 1 yr ago. It was the same for me. After ,I think it was the second infusion I called to see if I should even continue to go in for them. Well I was told to be patient cause I was on a starting dose nad he would increase the dose and the frequency. After a yr I am still going every 5 wks. I feel better but still have some pain. Mostly my neck is givin me fits rite now but I think that is from the way I`m holding my arm since having this surgery.
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
iVillage Member
Registered: 08-21-2004
Tue, 04-26-2005 - 10:02am

I guess I expected to much, yes, but I didn't expect to feel worse for sure.

Donna
iVillage Member
Registered: 08-21-2004
Tue, 04-26-2005 - 10:10am

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.

Donna
iVillage Member
Registered: 11-03-2003
Tue, 04-26-2005 - 12:37pm
Donna, I'm glad you're going to talk to your doctor about this.

Molly

iVillage Member
Registered: 11-03-2003
Tue, 04-26-2005 - 12:58pm
Donna, it occurred to me as I was reading these posts, that maybe some of your increased pain is due to weaning off the prednisone.

Molly

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