My Rituximab experience with RA and ME

[deleder2k]

Do you know how much Rituximab you're getting each time? In the multi centre study with 150 patients in Norway, dr. Fluge and Dr. mella will try one infusion the first day, then after 14 days, 3 months, 6 months, 9 months and after 15 months. They think that lowers the possibility of relapse.

Good luck!

 

[Tristen]

Best of thoughts for some positive results and thank you for sharing your journey. I've been on a personal adventure myself for a bit lately looking at a possible connection with my arthritic condition and ME. I look forward to hearing about your experience with the "overlap" between the two diseases.....especially in the areas that it turns out to be more than you had expected.

 

[rosie26]

Go well tomorrow Nielk, I am excited for you.

 

[deleder2k]

Latest from the study at Haukeland University Hospital (few weeks ago): In a randomized phase II study of rituximab two infusions two weeks apart versus placebo in 30 patients with chronic fatigue syndrome, we then completed an open-label phase II study 28 patients received rituximab induction and maintenance therapy, a total of 6 infusions over 15 months.21 patients (72%) had response to defined criteria, 18 patients (64%) had clinical significant improvement in most CFS symptoms.Duration of response within 36-month study period, the mean 108 weeks for 14 major responders and 68 weeks for 4 moderate responders, and 11 are still in response at 36 months follow-up.Side effects: two with allergic reactions, two with upper respiratory tract infections, uncomplicated two with late-onset neutropenia.

Maybe this is what you can "expect". There is a difference though; they had 6 infusions over 15 months. As I said, good luck!

 

[Nielk]

Latest from the study at Haukeland University Hospital (few weeks ago): In a randomized phase II study of rituximab two infusions two weeks apart versus placebo in 30 patients with chronic fatigue syndrome, we then completed an open-label phase II study 28 patients received rituximab induction and maintenance therapy, a total of 6 infusions over 15 months.21 patients (72%) had response to defined criteria, 18 patients (64%) had clinical significant improvement in most CFS symptoms.Duration of response within 36-month study period, the mean 108 weeks for 14 major responders and 68 weeks for 4 moderate responders, and 11 are still in response at 36 months follow-up.Side effects: two with allergic reactions, two with upper respiratory tract infections, uncomplicated two with late-onset neutropenia.

Maybe this is what you can "expect". There is a difference though; they had 6 infusions over 15 months. As I said, good luck!

Thank you!

I will be receiving one infusion tomorrow and then another in two weeks. Right now, they are saying this should last for 6 months. I wonder if this can be adjusted if need be. I will try to check on that tomorrow.

By the way, they are also adding Methotrexate (DMARD) along with it the Rituximab. I think this is usual for RA.

Thank you everyone for your well wishes.

 

[NK17]

Wishing the best possible outcome @Nielk !

We are all rooting for you to get well .

 

[ukxmrv]

Great to hear that the first infusion is tomorrow @Nielk

Hope it goes smoothly and your recovery starts here.

 

[deleder2k]

Methotrexate could work out as well. I think the first patient with M.E and lymphoma got that. That's how they discovered that those kind of medicines had an effect. That patient didn't get rituximab, but regular lymphoma treatment. That was at Haukeland University Hospital in Norway in 2004.

 

[heapsreal]

i hope u come back and tell us your cured.

 

[Cheshire]

Thanks a lot for sharing all this with us.
Best wishes.

 

[bertiedog]

Good luck for today @Nielk I really hope you get a remission of all your symptoms.

Pam

 

[Nielk]

I'm here at the infusion place. They started my IV. First they put through steroids agains possible allergic reaction. They will start the rituximab in a few minutes. The dose is 1,000 mg which is standard for RA. They took blood first to check some levels. Another doctor is doing a research study here to check the B cells before the Rotuximab and then again after a year. I agreed to take part with the understanding that I will get a copy of my results.

 

[SDSue]

Wishing you the very best, and hoping to hear positive results. Thanks for your willingness to post your progress!

 

[ukxmrv]

That great news about the B cells testing research NielK

Hope the infusion goes well for you!

 

[Valentijn]

Do you know how much fluid you get with it? The IV saline is a nice perquisite of IV-based treatments

I only get 200mL 4 times per week (100mL saline mixed with antibiotics and 100mL plain saline), but even that little feels pretty damned nice.

 

[Nielk]

Do you know how much fluid you get with it? The IV saline is a nice perquisite of IV-based treatments

I only get 200mL 4 times per week (100mL saline mixed with antibiotics and 100mL plain saline), but even that little feels pretty damned nice.

Good question. I'm not sure how much but I would think its a nice amount since they run this for over five hours. Yes. It might be an added benefit.

They are monitoring me very closely for possible allergic reaction. So far so good.

 

[SpecialK82]

Fingers crossed for you today Nielk, I'm excited for you starting a new treatment, hope you love it!

 

[Nielk]

I am so thankful to be back home, in my bed. They had to stop the treatment halfway because I had a mild allergic reaction. I started to develop a cough and scratchy throat. They gave me more anti-histamines - waited for a while and then continued successfully.

Hopefully, I will get a good night's rest.

 

[alex3619]

I am so thankful to be back home, in my bed. They had to stop the treatment halfway because I had a mild allergic reaction. I started to develop a cough and scratchy throat. They gave me more anti-histamines - waited for a while and then continued successfully.

Hopefully, I will get a good night's rest.

This mild reaction is not uncommon from my understanding. They don't want to give too much anti-histamines, so they give what is enough for most, and then top it up if you need more.

 

[beaker]

Latest from the study at Haukeland University Hospital (few weeks ago): In a randomized phase II study of rituximab two infusions two weeks apart versus placebo in 30 patients with chronic fatigue syndrome, we then completed an open-label phase II study 28 patients received rituximab induction and maintenance therapy, a total of 6 infusions over 15 months.21 patients (72%) had response to defined criteria, 18 patients (64%) had clinical significant improvement in most CFS symptoms.Duration of response within 36-month study period, the mean 108 weeks for 14 major responders and 68 weeks for 4 moderate responders, and 11 are still in response at 36 months follow-up.Side effects: two with allergic reactions, two with upper respiratory tract infections, uncomplicated two with late-onset neutropenia.

Maybe this is what you can "expect". There is a difference though; they had 6 infusions over 15 months. As I said, good luck!

Is this info published somewhere ? Wondering your source.-- would like to share info w/ my dr. Thanks.