Question with Remicade time.

My gi convinced me to give Remicade one more treatment.. he thinks I have not given it enough time. Started Oct 2010. The previous Remicade treatment had been upped to 10mg/kg. I ended up in the hospital that night with chest pains. Dr suggested the next infusion I should have prednisone before. So I got up and took my 40mg cautiously because I just got off of it. I arrived at the cancer care center and the oncologist said he wanted to give me a second steriod, dexadron by iv. He also informed me I would be spending the day there under observation.
After 3 sticks, the nurse got it. I have stupid veins. I really felt bad during the entire infusion, dizzy, blurry vision, tired. Finally released and came home... I had a monster headache, ears felt full, short of breath, heart racing, dry heaving and dizzy.. I kept trying to sleep but the headache was so bad. And my vision was shot. By bedtime my joints were severely swollen and painful.
I didn't sleep at all...woke up to my urgent bm's again.. already up to 6 and its just nine am. My joints are killing me.
I meet with my GI on friday and I really think that I need a change. It seems I should be feeling a little good...not worse.

I have only one good thing that happens.. my gut pain has gone away. Other than that, my joint pain has worsened...or my crohn's arthritis is getting worse. Who knows.

Thank you...I am glad it is working for you, I had such high hopes for this to be my miracle. I guess I just don't know anymore.

I was premedicated with prednisone, dexadron, tylenol and benadryl....just reading your post made me say wow.

The benadryl makes me sleep too...and love the blankets. I just wish it would work for me... I want some relief between infusions.

mdf34 is absolutely correct in what he is saying. Remicade is a drug that has to build up in your system to reach it's full potency. After being on remicade for about 5 years, I thought that it was no longer working more than a week and not worth using. I went off of it and tried humira and cimzia. Humira never worked for me(it has worked for many others though) and I had to wait for a year before cimzia was on the market. During that year, I was only on steroids and symptomatic meds to help. It was during this time that I quickly realized how much remicade was actually helping me. My arthritis was out of control and I was in bad shape. Cimzia helped with many of the digestive symptoms but it never touch my arthritis. Finally, my G.I. gave me the option of going back on remicade again despite all the warnings and the stigma that once you stop you can not restart. My first infusion I realized how much the med helped by my joint pain. After each infusion, I noticed a little increase of benefit and it has continued for the past year and a half that I have returned to the med.
There are some that notice miraculous changes their first few infusions but that is definitely the minority of us. During the first year, you and your doctor are really still trying to find the correct dose and frequency that will work for you. All with dose and frequency, you may need to find other meds to premedicate and add in combo to help the remicade. My most effective combo was when I was on either methotrexate or 6mp along with the remicade. Unfortunately, despite my body feeling wonderful and what I thought was a remission, my liver didn't get the memo and my liver levels went way up. I would go back on that combo in a second if I could. My point being that it takes time and the best thing that you can do is be involved and patient with the process.

ok...patience. the thing I fail at most. =) thank you for your words of encouragement. As I have said before, the joint pain really gets me the most. But I will listen and be patient. I appreciate it.

Putting in my 2 cents. I had to quit Remi because of debilitating joint pain. Have you been tested for antibodies to the Remi? Joint pain is one of the signs. Not saying that is your problem also, but it's worth checking into.

I did some checking of my own facts. I actually started my Remi late Sept.  I do usually have a day or two of bone/joint pain.  But I just talked with my GI recently and we discussed the possibility of either increasing the dose or going shorter time between infusions.  He is all for going more time on this drug.

hey guys, yea i believe 10 is the highest, I'm being bumped up to Xevery 6 wks. My joints only in my shoulders and neck, and only when I try to use them. Like this morning I had to work in my shop, felt ok, so I thought, I won't take pain med's, man alive I only worked for 2 hrs and my god I couldn't get in the house fast enough to take 2 vic's, i mean my muscles in the miiddle of my back, feels almost like someone hit me with a baseball bat, but my shoulders and neck were agony. I took hot shower along with pills and started to get some relief, but it wasn't enough to really take pain away. So to me I have to take med's before I do anything physical, or I'm playing catchup with pain med's, I tried to get appt. with pain manage. I'm not sure I like there way of going, they never did call me back, but while I was on hold a recording was telling me all his rules for script's, you have to see him every month for refil, and all of this crap. I don't like a dr. telling me I have to see him every month for refil. thats draining our system of over spending on ins. I'm seeing my gp on tues. before I go in for infusion, last one was feb 25th. 7th one. coughing stopped. like a light switch. I'm gonna tell my dr I want whiskey and laudlum, forget all the bio's. I've had this for 40 yr's, it seems that i never have had remission unless mechanically. which has been twice, but 4 surgeries, 1 exploratory, 1 bowel bypass(which almost killed me).

AG