I was diagnoised a little over a year ago. My Rhumy decided to go right to the remicade instead of the other meds. I have IBS also and remicade is known to help that also. I also take meIoxicam and tramadol. My infusions have moved up from 8 weeks to 7 weeks. I do well with it. I do not have to pre-med, although my father did when he used it. It would make him very itchy and anxious. My father did remicade for years with a lot of success. Because of other health issues he has had to stop and has not been able to find another medicine that has given him as much comfort.
Although I dont enjoy the infusion I do enjoy the few hours it makes me to sit and do nothing but read a book or watch a movie. I have a 13 yr old son who is Very active and always seem on the go! so a few hours to myself every 7 hours is invited. A lot of things are what you make them. I hope you will get relief form the infusions.
Camela, I was so scared to take biologic medicines I convinced myself and rhuemy that the Sulfasalazine had done the trick. When I went back to work, on my legs and feet all day, I found out that i was wrong. I started remicaid a week later. I was so nervous when they put the IV in that I cried a little bit. I can laugh now but felt like I was letting them poison me and I would be sure to have some horrible reaction that would send me to the ER. Turns out everything went great. I am about to get my 4th infusion and have been able to stop all other medications. We are still trying to figure out the the dosage that will work best but things are getting better. My legs and feet are greatly improved, not perfect but enough to help me move on with life. I may not be running marathons but at least I can walk them now. Wishing you the best.
Tim G
Thank you so much for the explanation. I didn't realize these infusions were so far apart. I see now why a picc line wouldn't be a good idea.
Renee GrumpyCat said:
I don't know if it is an option, but I wouldn't recommend it. Remicade infusions are spaced anywhere from 4-8 weeks apart. Since they are more spread out there isnt a need for a PICC line. Also Remicade suppresses your immune system, I can't think that it would be advisable to have a PICC line or a mediport. There is already a risk of infection with PICC lines; being on an immunosuppressant just increases that risk. Peripherally insert IV catheters carry less risk.
The catheters used for remicade infusion are tiny. Even smaller than those that are used to draw blood. I can see the need for a PICC if you are getting daily IV antibiotics, but not for monthly infusions.
If you ever need to take Remicade, it's really not that big of a deal. Especially after having DAILY infusions! This will be like a cake walk compared to the treatment for Lyme!
write2rdn said:
I have not had any of these meds as yet. How often do you have the infusions? When I had Lyme disease I had infusions every day for 30 days, but they put a pic line in under the skin to hook into each day instead of re-sticking me each time. Is that an option for the Remicaid infusions?
No, never inject in the same spot! :) Your nurse will tell you that. Also, thecompany that makes enbrel has a nurse you can call and a pretty good website that answers questions, so don't worry. And thanks for your replies as well. Good luck.
beecreek said:
oh ok I understand Ive had antibiotics received by IV. It was hard on me. I was on it for a long time the last time I got an infection and they kept losing spots in my arms where they could do it. It left my arm so painful. But I was getting many infusions on a daily basis so probably not the same thing. I appreciate u responding to my post Camela... thx for explaining it and for the tips for myself..like icing and marking the area. Do I always inject in the same spot? And should i ice as a precaution to prevent bruising.. Im so nervous but trying to learn as much as I can.. im sure the nurse will be helpful too when she comes in tomorrow but i have a bad habit of forgetting to ask all of my questions.
Camela Sutton said:
Oh! Enbrel injections are when you do it yourself - infusions are when you go to doctor's office etc. and it is given by IV. I hope you get relief from your enbrel injections - remember to mark down which leg/stomach area you used or you will find that you can't remember! Also, ice afterwards if you need to. Good luck!
beecreek said:
I am going to start enbrel injections. The nurse is coming tomorrow to demonstrate. And I am nervous. Very nervous but trying not to think about it. I'll be more nervous when Im on my own doing it. I hope you dont mind me asking you a question but what are infusions? Congrats on the new job & hope your pain eases.
I haven't used Remicade, but wish you the best and I think its great you are going to continue playing the piano ! Please keep us informed on how you are doing. Humira hasn't worked for me and I have an aptp't Friday to find a new treatment, so I might be starting Remicade with you.
It is true, a picc line is not an option for this treatment plan. When I first started Remicade, I would go to IV therapy and they had a very hard time getting IV lines in and going. (I had literally no skin on about 25% of my body at the time). After about 1 year of the trauma for me and the nurses, I opted to have a port-a-cath put in since this would be the "rest of my life", according to my Rhem. Best advice EVER! Good luck to all who may have to use this treatment plan. It has worked for me for a number of years now and I hope it will continue to work. I am taking the max 800ml every 6 weeks, but its better than the alternative, as we all know.
GrumpyCat said:
I don't know if it is an option, but I wouldn't recommend it. Remicade infusions are spaced anywhere from 4-8 weeks apart. Since they are more spread out there isnt a need for a PICC line. Also Remicade suppresses your immune system, I can't think that it would be advisable to have a PICC line or a mediport. There is already a risk of infection with PICC lines; being on an immunosuppressant just increases that risk. Peripherally insert IV catheters carry less risk.
The catheters used for remicade infusion are tiny. Even smaller than those that are used to draw blood. I can see the need for a PICC if you are getting daily IV antibiotics, but not for monthly infusions.
If you ever need to take Remicade, it's really not that big of a deal. Especially after having DAILY infusions! This will be like a cake walk compared to the treatment for Lyme!
write2rdn said:
I have not had any of these meds as yet. How often do you have the infusions? When I had Lyme disease I had infusions every day for 30 days, but they put a pic line in under the skin to hook into each day instead of re-sticking me each time. Is that an option for the Remicaid infusions?
Hello to you too! I have been on Remicaid 500 mg for years, I had relief somewhat after the 2nd infusion and defin after the 3rd, I called it a miracle drug for me. I didn't have any reactions at first beside sleeping a 12 hr day the day of and after the infusion, made me pretty tired but I'm used to that now. One reaction I did have was the strangest thing, the next day and a few days after each infusion, I had a numbing aggravating feeling, mostly right sided, from my knee down to my ankle and from my elbow to wrists....strange. She then gave me benedryl before my infusions and it all stopped, this however makes me sleep the entire time as much as I try to fight it, my nurses always say, "night night" lol Best of luck to you I hope you find it works well and gives you relief too! :)
I am currently on Remicade and have been since November. I also was nervous when I had to go for my first outpatient treatment (my first one was while I was hospitalized and on a "magic carpet ride" as I say so I really didn't know or feel much the first time. However, I must say that my skin was clearing up within a day and the swelling in my joints started going down also. I have had 4 infusions so far and they work well for about 2 or 3 weeks and then I end up in the ER due to swelling and being unable to move so my doc has moved my last 2 up by 2 weeks. I was lucky to not have any reaction to the treatment except I am tired afterwards, but I am usually feeling flu-like by the time I get the treatment so the tiredness is not much. My doctor orders Benydryl and Tylenol for my treatment and they asked me the last time do I want the pill of benydryl or shot and the shot worked much better. The worse part is the waiting to see if the meds are actually going to work long term or do we need to go onto something else.
I am not sure about the infection, hopefully that will not affect your first treatment.
I get my benedryl in the I.V. right before the infusion and also tylenol. I still have flared in between at times, and when that happens, I either get an injection or go on a week therapy of prednisone-it seems to do the trick. I've been on remicaid every 6 weeks for 5 years and it is still working, only I have found my psorasis is flaring for the first time ever.
I love my infusions. I was nervous at first too. But once it started working I was hooked. Only bad side to it is the week before I go for my next infusion, the remicade seems to wear off. All the aches & pains return. I drag myself through that last week right up to the infusion center. Then I go home & sleep most of the day away. The next day the spring in my step returns. Wishing you all the best. Let us know how you make out.
Thanks so much for sharing your infusion experience. I start Remicade in about a week. How many infusions have you had? I think, I start with three weeks in a row and then go to every 2 months.
I'm confused. Did you need the benedryl before or after the infusion? I want to be prepared. thanks for your help.
Leesa415 said:
Hello to you too! I have been on Remicaid 500 mg for years, I had relief somewhat after the 2nd infusion and defin after the 3rd, I called it a miracle drug for me. I didn't have any reactions at first beside sleeping a 12 hr day the day of and after the infusion, made me pretty tired but I'm used to that now. One reaction I did have was the strangest thing, the next day and a few days after each infusion, I had a numbing aggravating feeling, mostly right sided, from my knee down to my ankle and from my elbow to wrists....strange. She then gave me benedryl before my infusions and it all stopped, this however makes me sleep the entire time as much as I try to fight it, my nurses always say, "night night" lol Best of luck to you I hope you find it works well and gives you relief too! :)
Hello: I get Remicade every month. Other than welts all over my body ( the first time- now get Benadryl IV first) it has not been bad at all. I even was able to travel and with the help of my Remicade Rep? Get my infusion in another province itch little difficulty. Normally I feel better 18-24 hrs post infusion and it asts ~ 3-3 1/2 weeks. I am a nurse and the hardest thing for me is learning to be the patient. I use my infusion time to nap, catch up on movies I have wanted to see but ad no time and to read. It is relatively uninterrupted time. My husband bought me n iPad so I could watch movies, email or whatever while getting infused. My infusion site also has the lowest warm flannels. I used Enbrel before and would still use it had it continued to work. I try to think that my infusion days are medical spa days. It helps ESP when they have issues with the IV . And, unlike home (small kids and pets) I get to go to the bathroom myself and my movie choices extend past Barbie!
I'm confused. Did you need the benedryl before or after the infusion? I want to be prepared. thanks for your help.
Leesa415 said:
Hello to you too! I have been on Remicaid 500 mg for years, I had relief somewhat after the 2nd infusion and defin after the 3rd, I called it a miracle drug for me. I didn't have any reactions at first beside sleeping a 12 hr day the day of and after the infusion, made me pretty tired but I'm used to that now. One reaction I did have was the strangest thing, the next day and a few days after each infusion, I had a numbing aggravating feeling, mostly right sided, from my knee down to my ankle and from my elbow to wrists....strange. She then gave me benedryl before my infusions and it all stopped, this however makes me sleep the entire time as much as I try to fight it, my nurses always say, "night night" lol Best of luck to you I hope you find it works well and gives you relief too! :)
I'm on Remicade. I'm absolutely looking forward to my next infusion (in a week!). I feel so much better on Remicade than I did on Enbrel. It's life-changing for me. I have five homeschooled kids and take care of friends' kids as well, so my Remicade infusions are sometimes the only time I have to myself! LOL
Here's a couple blog posts I wrote about infusions ...
I was on Remicade for about 7 months until I had a reaction. It worked great for my Psoriasis. Completely cleared my skin in about 2 months. As for the PsA, I'm not sure. I did not have any pain while I was on Remicade, BUT I've been off Remicade for well over a year now and my PsA did not return at all. So apparently I'm one of the very rare few that went into spontanious remission. As for the actual infusion, there was nothing to it. Mine took exactly 2 hours. I sat in a room with usually 2 others getting infusions along w/ an infusion nurse. I usually took a nap or read, or played on my cell phone. I had no side effects that I know of.
As for the infection, that would be your doctors call. Some docs will not infuse if you have any signs of infection at all, others will go ahead and do it. It has a lot to do with your overall health, age, and severity of the infection.
I figured out how to not be bored during infusions! So happy
I’m a busy bee, usually. It’s hard for me to sit in one place and I get antsy if I am forced to be good! I had tried reading, crosswords, a little sewing, but still could not stop counting the drips of the remicade. It was so frustrating!
My most recent infusion on Monday, I took some research with me. I made sure that it was on a topic that I don’t know a whole lot about, something I’d found in one of my professional journals. I spent time reading the article, then looking up terms I didnt know and pictures of different devices on my iPad. It worked like a charm to keep me distracted. No more counting drips! Yay!
I started to feel better after my third one, so hopefully that is your lucky number also! One thing the nurse told me (because I was feeling pretty bad on the day of my 3rd one) if I started to feel bad before my next one to call and ask doctor to move it up. So my 4th one I got in 6 weeks instead of 8. And my next one is also moved up to Monday (yea!). I am so glad the nurse told me that because the doctor didn't. Hope you feel better soon!
mimiB said:
I am so happy to hear of all of these successes with Remicade. I have my third infusion next week. I need to see some results. How long did it take you all to really notice a difference? I have hope !
I to have tried humira ,enbrel and mtx. Started remicade in August of 2011 took about 4 to 6 months before I noticed any difference doc says good thing about remicade is you can adjust the dose. Mind has been adjusted a couple of times. Never had psoriasis really bad just a spot here and there mostly joint pain and fatigue, oh yeah and muscle soreness. I have had no psorisis in a year no joint problems just fatigue and muscle soreness. Start feeling bad about a week or two before infusion. The only problem I’ve had with it and also with humira and enbrel is mouth sore aka canker and cold sores. But I deal with it. The place I go has wi- fi so I just take my iPhone and relax for 3 to 4 hours anyway hope you have a positive experience .
