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Kelly, sorry to hear about the flare after your Rituxan infusions and Brenda, sorry to hear of the infections you got.
I was on Rituxan for 7 years and it's the first med that worked for me. However, after 5 years, I started getting infections after the infusions so I asked my doctor to prescribe an antibiotic that I could take as a preventive measure for the infections and I was fine after that.
However, I've had a chronic cough since March of 2015 and all physical possibilities have been ruled out and now they think it might be the Rituxan causing the cough so I was supposed to have my next infusion last week but it's been cancelled for now and I'm going to try Xeljanz, which is a DMARD in pill form that is taken twice a day.
Brenda, I don't know if you're still trying the Rituxan with all the problems you've had from it but if you are, I hope it gets better.
Kelly, keep us posted on whether you stick with Rituxan or not.
Joanna from Dundas, Ontario
Leader of the Living With Rheumatoid Autoimmune Disease Team
Hi! I am new here but saw the post and thought I would comment. I recently started Rituxan infusions. I've had the first 2 and not schedule for another until April but could possibly be moved up, my rheumy will decide later. After the first one I had 2 good weeks where my pain level was much better. I thought it was going to be awesome. But after the second one, I've been flaring badly for the last 3 weeks. I'm disappointed but my rheumy says it can take a while to see any results, it's too soon to tell, he says. I failed methotrexate alone, failed Enbrel and failed Simponi Aria infusions .... or I should say they failed me. He was just sure that Rituxan was going to be my best bet but so far I would have to say it doesn't appear to be working. Just the last week alone I have had more pain in my hands than I have had in several months. I'm feeling disappointed and I don't know what comes next.
As for side effects, the only thing that I really noticed was a horrible headache afterwards that lasted about 48 hours after the infusion. The nurse told me that if you are prone to headaches (esp. migraines, which I am) you will most likely end up with a headache at the end of the infusion and I did. My infusions lasted about 6 to 7 hours so plan for a long day and take your tablet, laptop, a book, magazines, and snacks to keep your mind busy. Good luck and let me know how they work for you. Friend me if you want to, my name is Kelly.
''People who say it cannot be done
should not interrupt those who are doing it.''
"Slow progress is still progress."
Kelly_SS from Arkansas
LIVING WITH RHEUMATOID ARTHRITIS & FIBROMYALGIA ...
RAISE AWARENESS & HOPE FOR A CURE
Yes prednisone is miraculously anti-inflammatory (at a cost) but doesn't halt the disease itself like biologics or disease-modifying anti-rheumatic drugs. Good luck... I can't tell you anything about the meds but I like medlineplus.gov , https://medlineplus.gov/ , it is curated info from the U. S. National Library of Medicine and has pretty thorough, straightforward facts.
For example here is the drug info on actemra:
I had Rituxan but it did nothing but give me UTI's that went into my blood and I was septic...Scary. I am now studying 3 meds that I need to start one of very soon. Living on Prednisone 5 - 15 mg a day. Bad flares, swollen hands and they are deforming. Big knuckles.
I am considering Actemra but I will not take MTX due to my liver.
Any body that can give me advise on this drug would be very great!
Stay in touch....
Hi Brenda, good to hear from you! I'm glad you had a good, if hot&humid, trip to Maui. How great to spend time with those kids and 2 grand babies! I think I would have stayed in the pool every waking minute.
Good luck with your diet. Sweet potatoes are awesome, aren't they? Maybe try adding foods back one at a time (like one for a week or two) maybe you will find you can tolerate some things, but maybe others bother you? Eliminating them and adding them back one at a time is the way to find out.
On the other hand it just occurred to me, a lot of red meat with its saturated fat may not be anti-imflammatory? Fish, especially high in Omega 3's, and "eating the rainbow" of fruits, vegetables and whole grains will give you all kinds of anti-oxidents, phytonutrients, carotenoids and other bioactive compounds.
The idea of unprocessed foods in the Paleo approach is a good one.
But I think cooked or baked foods with one or few and recognizable ingredients is not a bad thing. Cooking some things, such as carrots, increases the nutrition by making the nutrients more available.
The Arthritis Foundation has good articles and stuff. I just went to get a link to their website and went right to a slideshow of the Best Foods for Arthritis:
Hope this is helpful and I wish you well with your health and decrease in pain.
I had a good trip to Maui, some pain but not a terrible amount. The infections started after I got back. I am now free of the infection so my doc says. Maui was great; got to see my son Jake and spend time at his house and then he had to leave the very next day for the Artic Circle working on a ship to support the oil rig. I saw my step son and his 2 new babies and wife. I am so proud of how well he's done.
Maui was in their summer and very hot and humid. I've never been there in the summer. We were so hot we couldn't sleep or eat or read. Our makeup rolled off our faces. We spent time in the pool everyday just to cool our core. All of the restaurants. and bars there are mostly outside just under a roof. HOT. Our condo had no a/c just fans. Humidity was 98% Anyway it was good.
My son came through Oregon on his way back to Maui and stopped by to see me in October.
Beautiful Island. I've often wondered how my son can afford to live there and I can't. hmmmmmmmmmm.
Now I am trying to control the swelling and pain through a ant-inflammation diet. I am trying to do Paleo but hard for me to give up dairy and grains and beans and all processed food. But my RA is better~ not 100% but better. My husband is going on this too so that will help. I love grains and seeds. I had just a little feta cheese last night on a salad and I hurt bad today. So it must be so. NO potatoes but you can have sweet potatoes.
Anyway I'll let you know how it goes.
Best of luck to you.
Dear Brenda, I have been thinking of you, wondering how you are and how your trip was. I am so sorry you have had these terrible infections, especially the last one. Did it at least start after you were home from Hawaii? No fun to be in hospitals far from home.
As I was reading and got to where you couldn't see you rheum until late Nov., I was thinking that what you needed was an Infectious Disease specialist, so I'm glad they sent you to them. I hope the infection is under control now. Really frightening.
That said, and as I know also, chronic RA pain can be mind-warping and depressing, I think it would help you if you could do everything possible to de-stress, relax and take care of yourself. It can really help your immune system and help with pain control.
Meditation is probably the most powerful.... one way is to imagine being in a peaceful, happy place you remember and thing of the sounds, smells, feel of the air, ground, etc. as well as the sights. These all activate different parts of the brain very powerfully. (One of mine is a beach on Maui.)
You could also use yoga, walks in nature, coffee with a friend, a long hot bath, a massage, mani-pedi, a retreat, whatever works for you.
Be well, I will for you.
It did not work at all for me for the first 2.5 months. Then a little relief but not good like when I was on orencia. Read my log today about my problems.
Hope we both get some answers. We just want to be pain free or at least manageable.
Best of luck.
I just want to give you ladies an update on my Rituxan. I had my first shot on June 22 nd 2016 and my booster shot on July 6th. No bad effects during infusion at all. But soon after that I got a UTI infection and an eye infection. Urgent care. And he gave me enough refill that I could take with me to Maui. So a couple weeks ago I was feeling like I might be getting back a UTI. Anyway I started getting chills, bad ones, I've never had anything like that my teeth chattered. My husband was really worried. I was really dizzy, threw up a little. But the second night I started having chest pains. My husband took me to the ER at 3a.m. They did lots of test, x-rays and I had to pee for them. They gave me several things in my IV. They cultured my blood.
I had a UTI infection that had gotten into my kidney and was causing problems.
The doc wanted to keep me in the hospital and was getting a bed ready. I told them I didn't want to stay because it was my birthday and I was OK. He let me go home with lots of antibiotics
That night late they called me and said my blood cultures came back with growing bacteria. My blood was now septic. Aware that it can go anywhere in my body I was more than worried. My RA doc can't see me until Nov 28th. Are F*#$+g kidding me!!!
So I went to a follow up doc on call the next day and he wanted to call the infectious disease
unit and was going to call me with results. They put me on Cipro and antibiotic along with the antibiotic I was already taking. I finished both Sat the 8th. I called my reg. doc to get a test and culture of my blood. I can't see him until the 20th. Come on people!! Do I have to stay in the hospital to get a test???
Anyway I am worried about this going to my brain and attaching to my heart values. I have bad nights of worry and fear. Seems to me the doc would order me to come in and get the culture so he would have it when he sees me.
MY RA is somewhat better but still very active. Everything hurts today. My hands and feet are swollen all the time. I am still on 5 mg of prednisone daily. I highly doubt that I will take another dose of Rituxan. But what is left?
I am really frustrated about all of this and very worried. Help!
I have had RA since 1992 and it's getting progressively worse. I have been on all the meds that are out there. Embrel worked wonderful for 3.5 years. Rimmicade did not ever work for me and my Doc kept me on it for over 2 years until I got drug induced lupus from it and IGA. It attacked my kidneys. That was very scary.
I've been on Orencia since 2009. It has been wonderful. It worked great! Didn't even know I had RA. But as usual my RA takes over and it has stopped being effective. My Doc wants me to go on Rituxan but I am really scared of the side effects. Infection running rampant through my body and becoming a veggie isn't my idea of a party.
She said we were running out of meds to use. I asked what will I do. She says start the cycle over. They had no meds for RA when I started this journey.
I was very afraid of Orencia when I started but was calmed by a user on this site that had been on it for 4 years. So again I am asking for your help with Rituxan. Thank you.
I have been on rituxin with very little help for me. I am now on Orencia and that isn't doing much for me either. My rheumatologist and i will be deciding if there will be a switch of meds soon. I hope the rituxin works for you!
Sorry for the late response. I'm on Rituxan. I've been taking it since the summer of 2009 and it appears to be working well for me. I have had no side effects that I know of, which is great since almost everything else I've tried has had side effects.
Joanna from Dundas, Ontario
Leader of the Living With Rheumatoid Autoimmune Disease Team
I've not ever been on Rituxan or heard of anyone who is on it. I've been on Remicade since January and still haven't experienced any relief that I can detect. If that's still the case at the end of the year, I'll be switching - or getting off Remicade.
Wish I could give you more info, but don't know anything about Rituxan.
Good luck. I hope it works for you.
One pound at a time ...
I've never been on Rituxan but if what you are on has stopped being effective it may be time to make the change. Last year I changed from Remicade to Actemra because I wasn't getting the relief I'd had for the previous 6 years. As for will it work for you? That is something to be discovered as everyone is different in my personal experience. My rheum has used Rituxan for other patients though with great success.
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My RA is acting up; increased feet swelling, increased fatigue, increased pain/soreness. So, my rheumatologist would like to switch me. Does anyone have anything to share about their experience on rituxan? Side effects? Does it work? Thankfully, if I want it my insurance will cover it.
Any feedback is GREATLY appreciated!