I am curious to read the experiences people have had with this treatment for RA. What meds were you on before. Who can't take Remicade? Side effects?
I know a person who uses this treatment for colitis and he said it has improved his life dramatically.
Thanks in advance.
Terri
I've been on Remicade for just over two years. I have had RA for a little over three years, went on mtx six months after my first rheumatologist visit, and on Remicade six months later. I currently take Remicade with Arava. I had to stop mtx because my liver function tests were constantly elevated. I have an infusion every six weeks. I started out every eight weeks. My rheumatologist said that not many people can last eight weeks, it usually wears off before then. I started taking 3mg/kg, the starting dose, and am now at the max of 10 mg/kg.
I have never had any side effects at all from Remicade treatment. I get sleepy from sitting in the chair for so long and from the Benadryl they give you before the infusion, but never even the slightest problem with Remicade. Except for a slight stomach virus, I have not had any sicknesses at all in the last year, and the year previous was sick just once with a respiratory virus. Remicade is an immunosupressant, but my immune system seems better than most people. I have not been lucky enough to have no symptoms after starting treatment, and still have flares, but they are usually not as bad and don't last as long. I am able to work every day, walk, type, drive, dress myself, and generally lead a normal life despite pain and swelling sometimes, so I guess it's working just fine.
I have also been on Remicade for a little over two years, and just recently went to every 7 weeks for the infusion instead of 8 weeks. I only did it because we were going on vacation and I didn't want to miss the infusion, so the doc said it was okay to take it anywhere between 6-8 weeks.
I only had one side effect...only once I got hives, and thereafter I've gotten 25 mg Benadryl. The first time they gave me 50 mg and it put me to sleep for the 3 hours and I couldn't drive home. The 25 mg works just fine, puts me to sleep for about an hour while I'm getting the infusion, and I can drive home myself.
I have never had another flare up in the two and a half years I've been on Remicade. For me, it's been a miracle. I take the Remicade and 7.5 mg/week of Methotrexate. I can't take more of the metho because my liver function goes up.
Before Remicade, I was Arava, Plaquenil, quite a few other meds, and the RA kept progressing. According to my blood tests and Xrays, the Remicade has stopped the progression. I hope it continues this way.
Sue
I forgot to mention, my rheumatologist's office does infusions in the office and they give Benadryl by IV. I had it once before, and it put me in a stupor. My blood pressure runs low, so I have asked to keep taking the Benadryl pills, which just make me yawn.
I have been on Remicade for only a month and 1/2 now but was on it for 2 1/2 years before . I have had a couple of reactions ( one on my last tx) the reasons for my reaction were that they only admisitered 25mg benadryl I.V. instead of 50 ( perhaps next time they will listen to me ) and the infusion was too fast. A VERY high percentage of reactions are caused by too fast of a drip.My reaction caused chills with uncontrolled shaking ,muscle and back pain , extreme headache, nausea and elavated bloop pressure ( like I need that too
Some ask ( including my dear wife ) " What about the long term risks "? Well without Remicade there is NO long term, I must live for today and hope for the best as I have no choice.I have had RA for 21 yrs and have taken most every drug ( some even before I got RA
I hope we have answered your questions but if not please post again as everyone here tries to help the best we can, plus were so darn FRIENDLYI'm supposed to start Remicade in about a month or so, Im kinda nervous about the whole thing hehe. It's great to hear other peoples experiences with the med. Hopefully it will work out for me! I hope it does for you as well Terri. Please keep us posted on your progress! I would love to hear about it
It's not unusual to be nervous before you start a new medication...especially when it involves an infusion or injections...something different than taking a pill. I also was nervous before I started Remicade...just not knowing what to expect. My doctor is excellent...he explained the entire process to me. I told him I NEED to know everything in advance. I wanted NO surprises. He explained absolutely everything...
I walk in to the infusion center. I have a choice of sitting in a reclining chair or on a bed. I choose the chair because sitting in the same place for 3 hours is too much for my back. One time I sat in the bed and couldn't get up afterwards! I also bring my 'back' pillow with me, so I'm even more comfortable on the chair.
I have to have my blood tests done first, so they hook up the IV. I prefer to have it in the crook of my arm. One time I had it in the back of my hand, but it hurts me there.
Be sure to hydrate yourself well BEFORE the treatment...then your veins show up well. I drink lots of water the day before, but usually not the morning I'm having Remicade...this way I don't have to take time out while I have the IV...it's a real pain in the neck to unplug and go to the bathroom with all the paraphenalia.
They take my temperature once, they have me hooked up to a blood pressure machine which goes on every 15 minutes. I take 25 mg of Benadryl, which puts me to sleep for about an hour. I always tell them to KICK me if I start snoring, and the nurses always say they all gather together and take a picture of the Remicade patients who fall asleep, and then laugh at us for snoring and having our mouths open....lovely picture, huh? Ha ha!
So, the treatment takes 2 1/2 hours, and then they keep me there an extra 1/2 hour to make sure all is okay.
That's it. With 25 mg of Benadryl (to prevent hives) I can drive my self home. With 50 mg, I'm a goner...no way I'll drive home, and it's a bad feeling. 50 mg makes me very dizzy and my throat feels like it's closing up. Weird feeling.
I hope this gives you an idea of what to expect. As far as what the Remicade has done for me...it's a miracle. I was in pain all the time before, but now, hubby and I can walk about a mile in the evenings, I can exercise, pretty much do whatever I want. The doc told me I shouldn't go back to bowling. Ahhhh, well, I wasn't that good of a bowler anyway.
Hope this helps.
Sue
Wow Sue I really appreciate you going through the whole process. It gives me a much better idea of what to expect. I myself am wheelchair bound at the moment. But hopefully not for long! I hope remicade will help me feel better so that I can start physical therapy. :) Also I heard someone say that your supposed to take Methotrexate with Remicade, my doctor told me that I didnt have to. Metho made me feel horrible! She said that I can take it alone. I dunno!