First of all I would like to say that I really like our little subgroup on this topic, the attitudes are great. AND Doug, you gave me the courage to take this step, thank you. I appreciate the support. I've had such a hard time dealing with the physical limitations, I was a friggin trauma nurse and volunteered for a tour in Iraq, I was an adrenaline junky, now, I can't even prime an IV line. I know I can't do what I did, but I so desperately want to be an active participant in my triplets life. So, the treatment for me is HUGE! Thanks again for all the support guys...
As for the reaction, it didn't happen at first, I think it was after the 3rd or 4th increase. It started as a dry/itchy/tingling throat. Then I was having a thick, difficult to swallow feeling. They stopped the infusion, gave me a saline bolus (500ml) and 50mg of benadryl and 100mg solucortef. We waited an hour and slowly restarted it. She called the drug rep to discuss the reaction.... which I knew this was possible and not all that uncommon. She was so "snappy" and on it that she had my vote of confidence to continue... and I don't say that lightly.... I'm a tough critic. By the way, I was premedicated with tylenol, benadryl and solumedrol.
Thanks again and I pray this helps us all. Again, I like this subgroup that has been in on this topic.
Ciao
Rosanne

Thanks for the info, Roseanne. I think it's very useful for all to see this, in the event we may need it in the future. Everybody taking notes?

I like this subgroup, too. We deal everyday with the incredibly wide range of RA issues, but this is focusing on some specifics. There aren't many of us dealing with Rituxan, but others may come this way, and it's important that we're all armed with as much info as possible.

You would be the one to know a good nuse, so very cool tht you got one. Having acces to a drug rep, finding the right solution are invaluable, but kudos to you to be ready to know what to expect and realize what was going on.

Please keep us posted on how you fare between infusions, and, especially what happens with the next.

I'll be thinking of you.

Grazi mille,
doug

This has been a very interesting read. I'm defiantly taking notes.
Thanks everyone for sharing this

good luck with your journeys.

Well here it is Sunday, I had my 2nd infusion(1st cycle) of Rituxan on Thursday. Well friday and Saturday, I had energy, hands were working, feet did not hurt except my darn corn on my hammer toe and today.....well lets just say I want to crawl back to bed. I just took my arava, and prednisone along with my other meds and sitting here drinking coffee feeling a little depressed. I am optimistic this will help but the highs and lows are getting to me, My doc says it will be a few weeks till it really kicks in...I have a beach vacation in 3 weeks, will I be sitting in the room while the ret of the family is having fun??? Doug, what advice have you got for me??

Hey Elaine...
I just happen to be on right now and am sipping tea feeling the same way after a rough first injection of Simponi. BUT I made it through without visiting my friends at the ER.

I will pray that you will be out with your family at the beach!!! And that your day today will increase with energy! Coffee always helps :)

I'm sorry you're hurting and feeling depressed, Elaine. Waiting, not knowing when and if you'll get relief, can seem endless, especially when you're hurting. I wish I had some helpful advice to offer, but I'm afraid I don't. I think if I were you, I'd go ahead and crawl back to bed, and try to take my mind off what's going on.

It took a full 2 months before I had relief from Rituxan. I had a lot of waiting, as a matter of fact, and patience didn't come easily, but patience is my lesson.

It's not necessarily yours, but help the time pass by keeping your mind occupied. If I were you, I'd go on the vacation and take in the sounds of the water, the birds laughter around you. It may not be the beach vacation you've envisioned, but it might very well provide you with some relaxation.

I hope you see some magic before then. Keep your hopes high.

Blessings,
doug

Elaine, sorry you're feeling so rough, remember this too shall pass. Don't assume you'll be down for vacation, as you know this process is a see saw, take it day by day and hour by hour if needed.
Cosby, I am glad you didn't have an allergic reaction to your simponi, good news!
Last night I ended up going to the local ER at 0330 for intense nausea, but thank God no vomiting. They gave me zofran 4mg IV and a liter of Saline. My pancreatic enzymes are elevated too.... I've been having abdominal pain of unknown origin and well the combo of the two set me off. Clear liquids for me for a couple days. All this being said, this too shall pass..... Unfortunately it's a beautiful day and I am stuck in the house!
Take care everyone..... let's all stop and smell atleast one rose today, I just changed poopy diapers, so I have to find 3! :)
Ciao
Flip

Elaine, I am sorry that you are struggling right now. There is a see-saw effect to RA and you seem to have caught that rhythm. There really isn't any single thing to do. Follow your instincts. If you need to crawl back into a warm bed, do it!! If you can find someone or hire someone to help with the housework, do it!! I really hope that you will get some relief in the coming weeks.
I am exactly two months out and I am feeling a bit better. My husband reminded me that I was constantly rubbing my hands, that "worried" hand wringing that seems to go along with RA. They are still not back to par but much better. Someone once told me that one can't be "brave" unless you are stretching outside of a comfort zone. Well, folks, it looks like we are working on courage and patience!
Flipstrips, I really get the frustration. I was an RN back in the day and worked in the ICU so I had to be quick and adept. Yesterday, I baked some cookies and dropped a whole pan into the oven...grrrr.
Hoping for the magic for you that we are all hoping for ourselves!

Isn't it curious that so many of us have a history of working in the medical profession? Maybe that's why I want to get better NOW!!!! Thanks for all your support everyone...

I had my first two infusions (first cycle) of Rituxan in February of this year and am one month out from my second. I saw a big difference at about 3 months but am beginning to feel the downside a bit as I wait for the next.

Doug also helped me with advice and support at the time of my first infusions. Thanks, Doug! You seem to be of such great help to us all. I appreciate your support and experience in getting through this time of uncertainty!

My question .... I had been under the impression that after the first "cycle", subsequent infusions would be one every 6 months or whatever length of time the rheumatologist recommended between them. My next infusion is scheduled for the 27th of August and I am to have a second one again on the 10th of September. Are there two infusions on every cycle?

Thanks to everyone for their input on this subject. I am glad to finally find others who are on Rituxan and are having positive experience with it. I found so few that were on this drug when I began my infusions.

Good luck to those of you who are just beginning on this same trail. "Patience" is the key as well as having a positive outlook. I know these have been lessons for me throughout the years with RA.

My understanding is that Rituxan cycles are AT LEAST six months apart but can be delayed if the patient is doing well. And, yes, for RA it is given in two infusions. As you probably know, Rituxan is also used in lymphoma and is often given in 4-6 doses.
It is great to know that you had results in three months. Patience is not my strongest virtue : { but I plan to be well on the road to pain free by the end of the summer!! Of all of the treatments that I have tried, in my experience it seems Rituxan has the least side effects and is much better tolerated.

When I first started Rituxan, my doc wanted me to go as long as could before my 2nd treatment. I had a bit of a decline in the 6th month, so he "relented" allowed me to only wait 6 months. He always counts from the 2nd infusion, so in my book, it was 6 1/2 months. I went over 8 months between my 2nd and 3rd treatments, because I had major surgery in April, and wanted to give myself the time to heal.

There are always 2 infusions per treatment cycle, Ila. It sounds like your'e right on schedule for a 6-month cycle. Thanks for the kind words. I hope you don't have a long wait for the benefits to kick in again. I was a bit dismayed when I had a downturn. I was never as bad off as before I started Rituxan. I know that because I made a 4 hour drive to my brother's when it kicked in again. I expected to be hurting, but it never happened. December 17, 2008.

My doc came back from a conference last year, saying there was a growing consensus to standardize treatment intervals at 6 months. Check with your doctor on the timing, Kaweenee.

Best to all,
doug

Does anyone else on Rituxan for RA also have Secondary Sjogren's? My rheumy told me that It could also improve the symptoms of Sjogren's? Anyone with experience in this area?

I am officially confused. After my two infusion loading dose, isn't it just one infusion every 6 months or so? Please clarify.......
Has anyone had problems with nausea or GI issues after their infusion?
Thanks
Rosanne

A treatment consists of 2 infusions, separated by 2 weeks. Treatments are generally separated by 6 months. Never had nausea, and never had GI issues I can attribute to Rituxan.

doug