Sunday, January 21, 2007

Remicade Experience

Before I went in for my first Remicade infusion, I was searching the Internet for individual experiences with Remicade. It seems they are few and far between. So, I thought I'd tell my experience here.

First off, everyone's experience varies--as evidenced by the many methods of dosing and delivering Remicade I found on the Internet. Some doctors require their patients to take benadryl before an infusion. Others do not. Some put benadryl in the infusion with the Remicade. My doctor, it turns out, does not give any benadryl unless you've had an allergic reaction in the past.

Nervous and now, freaked out...
The nurse who checked me in turned out to be Perky Nurse Who Can't Hit My Veins To Save Her Life (Perky Nurse, for short). So, I'm freaking out because, if she comes at me with a needle, I swear I will scream bloody murder. She took my vitals (blood pressure abnormally high for me--go figure) and led me to the infusion room. Thankfully, the infusion nurse was there and saw the look of horror on my face. After Perky Nurse left, she assured me that she would be doing the infusion. I'm thinking Perky Nurse instills fear into the hearts of some of the patients.

Eat before you go
My husband came with me to the doctor after hearing the experiences of a co-worker who takes Remicade for Crohn's. I didn't eat beforehand, and the nurse told me that I had to eat (because in her experience, some people have reactions if they don't eat). Okay, so my husband went to get us some breakfast. The doctor came and saw me (and thankfully avoided mashing on my joints since he had seen me 2 weeks prior), told the nurse how many vials to use (2), and then returned to his office. I ate my breakfast, then the nurse put in the IV. Remarkably, it wasn't that bad--she got my vein on the first try. Granted, she went into a vein in my hand, not my arm, but I much prefer one stick to several.

Wear warm clothes
Once the IV started, I was freezing. The already cold room felt like a freezer once the cold IV fluids started going. The nurse piled lots of blankets on me, and I was finally able to get reasonably comfortable. I read my book, talked to the other patients, and played a game or two on my Blackberry. All in all, it took about 4.5 hours--check in to vitals check.

You're getting sleepy
On the way home from the infusion, I felt fine, but gradually I got more and more sleepy. Fatigue is more appropriate. We got home, and I dragged myself up the stairs to bed where I slept for about 3 hours.

The waiting game
And now, I wait. I wait for some sign that the drug is working. The nurse and other patients told me how wonderful Remicade is. How some patients respond immediately. How the day after their first infusion they went roller skating.

As usual, I can't really tell that much of a difference. My swelling has gone down (I can see the bones in my feet!), but the pain still lingers. My hip isn't grinding as much, but it still happens. I hope that I will respond better over time, but I am cautious in that hope.

The day after the infusion, I was able to go out for lunch, go to the mall, and still feel well enough to clean house and watch movies. But today, 2 days past infusion, I feel exhausted and weak, and I'm in pain. My brain feels like mush, and I've already broken down in tears several times today. I can only hope that things get better.

108 comments:

Wheelchair Dancer said...

hang in there...

xoxo

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betsyl said...

woo! foot bones!

Anonymous said...

Are you still on Remicade? What happened? I am considering taking it.

Disgruntled Ladye said...

Anonymous,
Do a search for Remicade on the blog. There are 2 other posts about infusions 2 and 3.

You only get Remicade every 6-8 weeks after the inital ramp up, so posts are spread out.

Anonymous said...

I have been on remicade for over 5 years now and it has been a life saver for me. I've had Crohn's Disease for about 15 years now, and I had to havce surgery in 2001. 6 months after my surgery I started to have symptoms again so my doctor put me on remicade. It has been the only thing that has helped me. I am virtually symptom free now. i do worry about the long term side effects, having children, breast feeding, etc., but it has enabled me to live a normal pain free life, so I would highly recommend it.

Anonymous said...

I am on my second remicade infusion(about a month) & I have had a good response to the medication. I usually eat something prior to the infusion. As far as side affects, at this point just VERY minor stomach pain that goes away minutes after the infusion is complete. I have tried several other medications alone, that have not been as successful in maintaining remission. With the remicade I am on remission since i started taking it. I am currently working with my dr to reduce the mg of the other medications to see what happens.

Anonymous said...

I am deathly afraid of doing remecade. I am now 145lbs and I am usually 190. I look like a concentration camp victim. My Dr.’s have all been jerks and only have given me prenizone twice in 3 years (I really do hate it but I cant keep the weight on otherwise.) I am going to see a new Gastro Dr. soon. I want a say so in my own treatment but these Dr’s just keep sending me for barium x-rays and Ct scans and pushing Remecade. I am at the point where I am just going to cave. I know I am going to get lymphoma, TB or some bad pneumonia from this stuff,, I just have that kind of luck but no Dr. will listen to me!!! I can deal with the Crohn’s pain and even the diarrhea, its just the weight loss that scares me because I am literally falling out of my clothes and can see my ribcage. Does anyone have any suggestions? Did you gain weight on Remecade? I need like 30lbs at least. I used to be a bouncer at a bar and had tons of muscle mass. This crohns is sucking the life out of me. I am tired all the time, my wife wants to kill me because I cant even put the Christmas tree up without going to the bathroom 4 times. Any suggestions would be appreicated.

JP said...

I'm 21 and I was born with Crohn's. My early childhood(between 3-5) was the most difficult for my parents because many doctors weren't able to diagnose me properly. They originally thought I had AIDS because it's very uncommon for people to be born with this disease. I was doing fairly well as a kid just on sulfasaline until my high school years. specifically My junior and senior year. for many those two years are very important for you to develop you're social skills that can be carried on for a lifetime. for me, I was trapped in my own body. Everything I wanted to do was ruined because of how severe my symptoms became. I remember I was invited to go to a girl's house I had been sort of been dating at the time to watch a movie with some of her friends. As soon as I got there I got even more sick. for me, the more nervous I would get, the worse I would feel and because I was a teenager I was intimidated by her. I got so sick I had to have my friend drive me home and make an emergency stop in the woods. I've marked so much damn terrain and landscaped from this disease even the dogs would go running. I was getting worse day by day. Prednisone did nothing for me but put me in a horrible mood and alter my personality so severely that I would lash out on people for no reason at all. I was convinced I was going to have to get surgery because all of the cocktails of medication they tried weren't working. I nearly died when they put me on 6MP because I had such a severe reaction to it. Remicade was the last option before surgery. I was ending my senior year of high school still sick, and upset because of so many opportunities and fun times I missed out on with my friends. At first I was very, very scared about the Remicade as well because I knew after doing some research there are some extremely serious side effect. But I knew the only other option was surgery. it seems to me that that's what you'll be faced with as well. Prednisone is a horrible drug to be on for prolonged periods of times and the fact is, your disease is hampering your existence. you need to live & enjoy life, and right now it doesn't seem like you are at all. you need to man up and take the risk. this drug may be your salvation. you can be scared but you must also be courageous and try to make change rather than just sit and let life pass you buy. there can be no courage unless you're scared. I was scared and I'm sure you are too but try to stay optimistic. My first dosage went smoothly. Instantly, I mean literally within the two hours of the procedure I felt things changing inside me. my pain was subsiding as the day went on and I noticed I wasn't bleeding as either. after my second dosage I felt...normal...I had forgotten what It felt like. I've never had appetite issues, but I did suffer some weight loss even though I ate like a pig. I put the weight back on and after the loading phase I started an 8 week regimen. I've been on it for 3.5-4 years now. The side effects are so minimal. occasionally I get a strange pain in my rectum area but for about 1 second and then it dissipates. more recently, I have noticed that I've been catching respiratory infections. I got bronchitis for the first time in my life last new years while I was in the city. it put me in the hospital for a day. I was on Antibiotics which helped clear that up. But just a few weeks(almost a year later) I got another infection was put on antibiotics, got over it; came back to school after break, to find out that my suitemates were all getting sick, so I think I caught something again because I have been coughing again and whenever I do I have a really strange taste in my mouth and the mucus is green. I'm going to have to figure this whole thing out with my doctors. All together this drug saved me. it gave me my life back, I can enjoy spending time with my family, friends, and do anything else I want to. As long as I watch my diet, and stay on this medication I'm symptom free. You owe it to yourself to try. you're state sounds pretty bad. I was there. you were a bouncer so I'm going to assume your were physically active.. I'm also very physically active. I was before I got ill in high school and am now in college. I just recently ran in the Men's Health Urbanathlon which was an amazing experience. I would have never been able to do any of the things I enjoy if my disease had its control over me. I could't deal with going to the bathroom 15 times a day and all the horrible debilitating pain associated with this disease and you shouldn't have to either. its no way to live you're life, and spend it with the one's you love. there is always a possibility I may have to get off this drug If I keep getting these infections or they become more severe. But for now, I dont think that's the case. And if it is, i'll have no choice but to get the surgery, or else I will probably get some form of cancer from living with it for so long and obviously revert back to being ill. Please don't be scared of some of the side effects. This is your life, and it’s passing you by every second. so don't waste it anymore! If you have the opportunity to try this drug do it! I'm sure you know this already but, you could be surprised how rewarding taking a risk a can be.

Anonymous said...

I have been on Remicade for a few years. I don't feel any better, painwise, but the doctor says it may slow down the progress of my disease (psoriatic arthritis).

Regarding cost of the drug, check with your Rx company to see if they have a Specialty Pharmacy division. I initially went to the hospital and let them charge the several thousand dollars. I eventually checked with Medco (mail-order company) and they send my monthly supply (7 vials) to the Doctor's office and I pay $36.66 Total, not per vial! I have the infusion at the Doctor's office.

Anonymous said...

I have been on Remicade for about 3 1/2 years now for RA. Was on Humira, then it stopped working while I was off of it for a while between insurance.

Remicade has worked really well for me, not 100%, but at least 90%. Recently had to go up from 700mg every 5 weeks to 800 due to a 8 day flareup, but my usual flare up only lasts a day. I can usually do anything I want on the Remicade, from riding a bike (avid cyclist) to working with tools and computers. Some things of course are a bit more difficult, but I would hate to see life with out this drug.

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NomDebPlume said...

What's with all the spam postings? This was a good and helpful blog for those of us on Remicade that has really gone off the deep end.

Too bad. I would have liked to view recent comments about Remicade instead of all the Viagra, Lesbian, etc. posts.

Adam said...

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