Rituximab Discussion

[ukxmrv]

Jacque, I am really enjoying your posts! Thanks for giving us all this information. It's hope as well.

Is there any chance that you could make your posts even more readable by spacing them out with an extra return (the enter key) every now and then?

 

[Jacque]

I will work on spacing out my posts!!! I forget there is a thing called a paragraph

 

[cfsme23]

What is the current regime for Rituximab, how often are the infusions and is it just a year in length, or longer?

 

[Snow Leopard]

There are different protocols, but the typical maintenance protocol for RA is: two infusions, two weeks apart and then repeat every 6 months. (range is 6-12 months, minimum of 16 weeks)
http://www.nmouk.nhs.uk/downloads/Rituximab-protocol.pdf

Obviously for CFS we don't know the optimum protocol until more study is done.

 

[cfsme23]

Thanks for the info Snow Leopard.

 

[Jacque]

With Dr. Kogelnick I had 2 within 2 weeks and then have 4 more over the next 13 months ... So I will be getting infusions every 3 months now. Gonna be long and drawn out but worth it if it works... ?

 

[dsdmom]

I have a question for you other Rituxan patients. I have never in my life had cold sores and I woke up today with one developing on my lip. So apparently I have latent hsv? Anybody else get a cold sore after treatment and does this mean I can't get round 2 on Tuesday? Yes I realize I should ask my Dr but it's going into the weekend and I need to fly out Monday. Anybody?

Also I have very dry eyes? Or they just feel weird like burning. Could be unrelated.

 

[Kati]

Get it checked out by your dr to confirm diagnosis. You have likely lost your B-cells by now and if it's HSV, got an opportunistic infection.

In my case my previously active shingles have not reactivated.

 

[dsdmom]

Hi Kati, thanks for the quick response. I have also had shingles before and thankfully they have not reactivated (yet) but I just don't know if this means I can't have round 2 while I have an 'active' outbreak? Why does it have to be friday? sigh...

 

[Kati]

This is only an opinion, FWIW, I don't think your Rituxan will be cancelled. you might get a round of Valtrex. if your dr has an answering service, It may be helpful to get that treated sooner than later, but then again my opinion only.

 

[dsdmom]

I will get in touch w/ my pcp tomorrow. I'm worried about my eyes too just because they are bothering me and I'm wondering if they could be having an outbreak as well?

 

[dsdmom]

Saw a dr tonight last minute @ a clinic here - was prescribed valtrex to take for cold sore. Dr. didn't think eyes were involved but was also quick to say she wasn't an eye doc. Happy to at least get the valtrex on board in case that is what is going on....but it's a quick course. 2 grams tonight and 2 grams in the morning. I'll check in with my normal pcp tomorrow about whether or not she thinks I should continue a longer course of it while I undergo treatment this week. I've never taken valtrex before - I have taken acyclovir for shingles a few years ago and HATED how it made me feel. So I don't have high hopes...

 

[Kati]

Drink lots. Glad you got seen.

 

[SOC]

Saw a dr tonight last minute @ a clinic here - was prescribed valtrex to take for cold sore. Dr. didn't think eyes were involved but was also quick to say she wasn't an eye doc. Happy to at least get the valtrex on board in case that is what is going on....but it's a quick course. 2 grams tonight and 2 grams in the morning. I'll check in with my normal pcp tomorrow about whether or not she thinks I should continue a longer course of it while I undergo treatment this week. I've never taken valtrex before - I have taken acyclovir for shingles a few years ago and HATED how it made me feel. So I don't have high hopes...

I've been on a high dose of Valtrex for at least a year without any problems. I second Kati's advice to drink LOTS of water. I was told that some by-product (?) of Valtrex can crystalize in your kidneys and cause kidney stones if you are not religious about flushing a lot of water through your system.

 

[dsdmom]

Thanks SOC and Kati. It will be interesting to see if the eyes feel better from this treatment too. Wish I could find an opthamologist's office open on a Saturday but am not having much luck...

 

[Whit]

So have patients here on this forum reported getting completely better from Rituxan? I'm only aware of two members here who are taking it and neither one of them seem to have improved much YET.

Of course, this forum is hardly a representation of the patient population, because if I got better, I'd be in Hawaii playing in the waves! (not here on this forum in my stinkin bed)

 

[Kati]

Well, Whit, there are no guarranty for any of us that it will work.

i have come to not be so attached to outcome at this point, but be pleased that whatever happens, chances are there will be more treatment options in the near future.

i would do it all over again if I had to. (I am completing my 20th week)

 

[Whit]

I'm pretty interested in outcomes.

There should be some people on this forum who are seeing drastic improvement from Rituxan.

 

[Jacque]

I think that is a GREAT sign.... You are obviously having changes in your immune system! How many infusions have you had? Glad you got the Valtrex and your eyes could definately be related... many autoimmune conditions such as Sjogrens have that symptom...so you immune system is obviously changing... I am guessing and this is just a GUESS... but with the Rituxan we are killing part of our complex immune systems... sooo it is allowing your infections from past to surface... Just a guess as much as it suuuucks! I doubt they will cancel your next infusion.

In regard to us being way better Whit - Kati is so right... we are just Canaries in a coal mine at this point... We are hoping that we are responders like those in the Norway study... Have you read that? There are early responders..and late responders... and NO responders.... And if this doesn't work Dr. Kogelnik with have something else up his sleeve for us to try ... as he has his finger on the pulse of this beast!!!!!

I am definately feeling MUCH better and have had only 2 infusions. I am vertical all day now...which is HUGE...as I was horizonal all day on the couch prior to treatment... Have more energy and am doing things... Going out to dinner etc... My pain level is still off the meter We will not know if this works until the end of our treatment which is 15 months if I recall? duh

 

[Jacque]

I am a complete tard on this site...I replied down at the bottom of all of the posts. Good luck on your next infusion... Are you seeing Dr. K?