When I got my first Rituxan infusion I was prepared to be extra-fatigued the days after, as I had heard can sometimes happen, but I was fine. Then after a week, suddenly I was getting more fatigued, feeling like I wanted to go to bed as soon as I got home from work and falling asleep in front of the tv at night (very unusual for me).
I thought it was part of the increased pain I've been having (although my swelling has stayed down) and is somewhat of a flare, if you can call it that since my RA isn't under control yet. But now I'm wondering if it's a delayed response to the infusion, and if the pain itself is part of it.
Anyone have any experience or understanding with this? How long does it take the Rituxan to start acting on those b-cells? Is it one of those "gets worse before it gets better" things?
hi , don't take Rituxan, but I'm told the remicade works like that. 'the fatigue' is so miserable. I hope you get more energy soon. I know just how you feel. LyndaI had my first Rituxan infusion on November 1. For three days following, I had nausea, chills & fever, headache, and increased fatigue. The symptoms mostly stopped then, except the fatigue - but that's been such a fixture of my RA that I can't tell you if it's worse after the infusion, or not.
My second infusion is next Thursday. I would love to hear from others how long it takes before improvement, and what kind of improvement I might expect.
I have been searchiing all day to find a web site, Thank god I kepdt trying. I just had my thrid infusion of remicade, 20 days later I was so sick and so tired, had to stay home from work, couldn't get out of bed, had a terriblle headache and could not keep any food down, but wanted to drink alot. Is this what I have to look forward to?Hi Joanie and welcome to the forum. I'm sorry you've been so sick, but you'll find lots of company here.
I haven't been on Remicade (and I don't even know how often is is taken), so I don't know how much of that reaction is typical. Perhaps someone here can chime in, or you could even start a new topic about it.
I know that sometimes the reaction from the med takes some time to get over, and then things get better. I'm perfectly willing to take some short term pain for long term improvement, I just want to know that the improvement is really coming!
hi innerglow, how wonderful to just say how I feel, and not feel like i'm whineing, I have been on so many drugs for ra, I guess I was just looking for something to work, I just found out that remicade was a chemo drug. It will be wonderful to have people to talk about it with me, so thankssss joanieYes, Joanie, give yourself a while to get used to the new meds. It gets better.
Welcome to the boards!
(I hit enter too quick there!)
Suzanne, I haven't heard of the drug you're taking, but I'm sure it will get better soon!
I have been through 2 rounds of Rituxan. I felt like you describe for the first few days, but then it went away. It took about 2 months for me to start feeling better after the first round. The second round six months later took 3 months or more for me to feel better. I was supposed to have my 3rd round in October but told my doc I didn't want to go through it again to only have a couple of months relief and it wasn't helping all that much.
BUT, I have a friend who just went through her 3rd round and she has done amazingly well on it. As a matter of fact she has started skiing again. So you never know. Just give it time.
Since the only 2 biologics I have not tried are Enbrel and Orencia I opted for trying Enbrel combined w/Imuran. I think its actually working. Its only been 3 weeks but I'm feeling better. I hope I didn't jinx myself by admitting it.
Best of luck to you with the Rituxan.
Crispy
Crispy, when you say you felt like I did for the first few days, do you mean immediately after? That's what I would have expected, rather than a week later.
I'll knock on wood here and hope that the Enbrel & Imuran does the trick for you!
Suzanne,
Suzanne,
I meant about a week later. In the beginning I thought it was working immediately and was so excited. It was when the pred infusion I was getting at the same time wore off that the fatigue got so bad. I also get higher doses than most of methlyprednisolone during infusions because I have reactions and they work hard to counteract them. It takes 9 hours for me to get my infusions because when they try to speed it up, I start reacting, then they have to give me Ativan to relax the throat muscles and ped to stop the reaction.
Long story short, I get a LOT of pred, so I thought I had an immediate I am so much better. The pred might be what staves off the fatigue reaction for about a week.
OK, Crispy, now I understand. They did give me some pred, but not an unusual amount, and I wasn't taking any orally at that point either. Only when the massive pain hit 5 days later did I start up on the pred again. Now that the pred's almost gone (down to 5 mg today) the pain is really bad again.
However, I'm seeing my rheumy tomorrow and I don't want to take more pred and mask the pain for the visit.
Cordy, I am so, so sorry about the flare you're having. It's so hard to start a treatment and then get worse instead of better. But we'll all just hang in there for now!