My Rheumy is switching me over to the Biologic meds - Ive been on MTX for 8 years; on it's own it isn't doing the job anymore. First she wants to see if I qualify to take Rituxan and if they deny me, then she'll start trying one of the others Biologics. I was wondering what it's like to go through the process of the infustions. Do you get sick? Is it painful? How do you work it in with LIFE? Thank you for any advice
Kristy
Hi Coolkrivera,
Of course everyones experience with meds are different even as their disease. So, this is just my experience. I was dx'd in '98 w/RA and FMS, been on prednisone, mtx, plaquenil, and a slew of meds. As my disease progressed my meds increased and others were added or taken away. In '04 and '05 I was started on Enbrel and then Humira, I was then dx'd w/ Mulitple Sclerosis in Jan '06. My RA really went haywire. I met the protocol for Rituxan infusions. I received my infusions on Augusta 9 and 24. I did well, no problems or side effects. My RA has quieted pretty good now, my Rheumy is so happy, I met with him yesterday. I will remain on my other meds he wants to taper some of them gradually. So, I asked a lot of questions as to in 6 -12 months from now, if I flare will it be a bad one? He couldn't tell me because this is a newer treatment for RA. He is hopeful and I am too, that I won't flare at all, but I do have stiffness, and I still have to deal with the Fibromyalgia and Multiple Sclerosis. But while I was getting the infusion, I received pre meds of benadryl and iv steriods. I was in a recliner with my own tv and had a good lunch both times. It was a good experience and I am glad about the outcome. I hope this helps.
Smhiles
I sit in 1 of 4 leather recliners in a very homey room with a 71 channel cable tv, a big book shelf ful of books and the goodie basket. Joanie takes my temp and BP then sets up for the IV she sets the IV, and I put my feet up and relax for a couple hours.
We talk about the kids, or hobbies or travel, watch tv and enjoy each other's company. Some people doze, but most chat. Its honestly a non event. Usually I feel better within a few hours or getting my IV sometimes I notice I can move my hands DURING the IV.
My rheumy doesn't routinely include benadryl so I am not sleepy afterwards.
I gotta say even when I have a not so good month I do love my remicade.
I too am on remicade... have been for the last year or so. I am given it in the hospital. They put me in a room (sometimes I have a roommate that has just had surgery~ but mostly I'm alone)... I tend to sleep, rest, watch TV ... and, have to pee all the time!!! I don't feel any instant relief from it. Just more tired the next day. But I know that it has helped me.Hey there...I just gotta say that I failed Humira and Enbrel and had the choice between Remicade and Rituxin....and well...if you havent tried any biologics...you may want to read up on them before jumping into Rituxin. It does pose a few more seriouse risks. Just wanted to mention that.
Anyways. I have had 3 Remicade infusions. I am also a nurse and the hospital that I worked in had an infusion suite. It was a lousy set up that was uncomfortable, didnt have a TV in all the rooms, and we the staff were caring for other types of patients in additon to the infusion patients. I knew I didnt want to be a patient in that setting. So when asked, I chose to have them at the infusion suite at my RDs office. It is a room with 5 massage recliners, a TV/DVD player and DVD library. After chatting with the infusion nurse, I found out that if I go in around 11 am, I am the only pt there. So I always go at that time...I see the RD first, and then wt, vs, fill out a few things, get my IV (24g), and he hooks me up. He gives me a Tylenol and a Clariton, and an IVP of solumedrol and then starts the drip. It takes about 2 hours. If I have company I will visit, otherwise, David (the nurse) gives me a blankie and I go to sleep. He has snacks and drinks available and I can bring them in...I have talked on my cell phone...and next time I am bringing my laptop. I had to bring my kids once and they watched a movie and then David took them to the nurses station and let them draw on the dry erase board. So...it is a pretty laid back atmosphere. I think you probably have choices about where you can get your infusion and if you feel uncomfortable with anything, you can talk to your doctor about it. As far as the physical part of it...I dont feel anything at all. No better no worse.
You guys ROCK!!! I'm bawling my head off right now!!
Kristy Since I dont work, I can theoretically take remicade any day I want. Depending on how far you have to drive though a remicade day is pretty well shot. I have to go nearly 40 miles away, so figure an hour there on country roads, about 3 hours total (Max) in the drs offfice, then an hour home. I usually run errands in town after the remicade, and since I've felt so carppy my H drives me in. He takes the day or half day off work, based on the FMLA. If you usually get benadryl, you will be pretty tired. I take my MTX on Friday afternoon, and have a quiet evening and most of saturday. Hi, I'm on infliximab (remicade), in the Uk you have an infusion over 2 hours with 2 hours wait after for the first 5 times then 1 hour plus 1 hour wait after that until about a year when you don't have to wait after the infusion so the time factor gets easier. I found it a bit odd at first.. I don't like needles too much but am getting used to them now - anyway the nurses are so well practised they can find a vein anywhere without too much bruising, now I don't bruise at all! It's a bit boring so take something to read, I take a picnic too because sometimes you're waiting to get started so you're still going over lunchtime... My employers are very understanding and because of new legislation in the UK, any treatment for a disability is not classed as "sick" time so I'm not penalised for it. My infusions are every 8 weeks, although I'm campaigning to get that altered to every 6 weeks at the moment but it's not too awful... We also have volunteers from the cancer centre who come in and give us hand and foot massages, bliss! Our day ward team are fabulous and I can call them any time with queries or worries which really helps... I find it like group therapy, sitting on the ward with other patients in a similar situation to mine, we swap tips on places to buy comfy shoes and wheat bags etc! I know when you look at the lit of potential side effects it can be a bot scarey but for me the 5-6 weeks of normal life I get each infusion is definately worth it. After the infusion I feel a little tired and have a really strong desire to sleep, I have the infusion in the morning and have so far managed to go straight home for a nap afterwards, next time I'll probably need to go to work for a few hours afterwards but will leave early and take it easy... I would suggest that for the first couple of goes you book the whole day off until you work out how it will go for you. I just had my infusion on Thursday, I was really bad 2 weeks before it but today I've filled in concrete around a gate post today, after working an 8 hour shift and then come in to do my laundry, popped out for my weekly shop and now relaxing... It's a wonderful drug when it works! Whatever you end up doing I wish you well with it - if you decide to go for it just take a book with you... KT Kristy I am curious as to why your RD is taking you to Rituxan first? Did the RD give you a reason for that? smhiles-- I'm interested by the fact that you were diagnosed with MS after you took Humira and Enbrel. Given the documented toxicities, do you think the meds brought the MS on? I have MS and RA as well. I take Copaxone for the MS and Kineret for the RA. Are you on any meds for the MS? Trixie, I just switched to this new RD so she did a whole new work up of everything, including x-rays. Her comment was that if the new xrays showed more erosion then she'd like to try one of the new Biologics...well, the xrays came back showing as she put it - severe erosion. She said the Rituxan was the best and she wants to aggressively try to slow the joint damage. (I have lost completely movement in both wrists and ankles they're frozen straight). More than likely I'll be denied the Rituxan - since I haven't "failed two other biologics" which is one of the qualifying crieria. Sarah and smhiles - My mom and MS - I understand the bilogic meds can trigger MS like problems??? k Sara G Yes, I was put on Copaxone, but once I was approved for Rituxan my MS specialist took me off of it, she said that Rituxan was also being studied for MS as well as RA. So far, I have had very little RA activity and it makes it easier to live without the swelling and great joint pains. I only may have to get an infusion every 6-9 months and maybe even never again. (WooHoo!) I tolerated the Rituxan very well, and it has been great not to inject myself everyday with the Copaxone. I feel some liberation. I hope this helps. Coolkrivera - yes, the biologics state that it may cause cns problems. Smhiles
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