Rituxan infusions .....

[Raglet]

I saw my rheumie today, she is looking at trying me on some rituxan infusions (monoclonal antibodies that hit B cells). She said that there are no guarentees but it could help my np-sle.

I am thinking about it, seems like I don't have an awful lot to loose in trying though I do want to have a closer look at side effects etc

raglet

[CaliGirl]

:P Hi Raglet,
I know a gal (I believe you know her too) who is on this treatment and could find out how things are going. She just started last month but I do not know how she is doing as I was in the hospital last month for over three weeks and last week for four days and have really been incommunicado with just about everyone.

I will get some info for you. I hope you are doing better. Brenda :flowers:

PS. Email me if you want to know who this person is and you might even be able to get in touch with her.

[Anisah]

Sounds great Raglet! :thumbs: As you know I'm waiting to find out too. God willing you will be able to get the treatments. I'm so happy for you. :goodvibes:

From what I've read the side effects are minimal compared to cytoxin because as you know it targets specific cells. There's not a lot online re Rituxan and Lupus because it's so new. There are a few links on this forum with a couple of posts from others who have had them but not a lot of information (some are under Rituximab). Its just too new.

I hope all goes well with this for you! From what I've read and my little talk with my Rheumy, it does sound like a very promising new treatment, praise be to God.

hugs,
Anisah
:flowers:

[Anisah]

Hi again, I just thought I would post this relevant blurb since it was a late find in my research and thought you (and others) might be interested in reading it...

http://www.arthritis.ca/toolbox/ask%20an%2....asp?s=1&page=2 (http://www.arthritis.ca/toolbox/ask%20an%20expert/browse2/default.asp?s=1&page=2)

- this is from a Q&A page; it's near the end of the page, 3rd ques from the bottom (copied below)


"Can you tell me about b-cell depletion therapy and arthritis? Is it being used in Canada?

Lymphocytes are a group of white blood cells that are involved in the immune and inflammatory responses of the body. Lymphocytes can be divided up into B-cells and T-cells, based on their differing functions and cell surfaces markers. Both groups of cells play a role in mediating the inflammation and damage that occur in Rheumatoid Arthritis (RA), Systemic Lupus Erythematosus (SLE) and other autoimmune diseases. B-cells produce antibodies including autoantibodies such as rheumatoid factor (RF) and antinuclear antibodies (ANA). They also interact with T-cells to activate them to infiltrate tissues and to produce chemicals such as interleukins, interferons and tumour necrosis factors.

It is postulated that autoimmune diseases could be treated by depleting the number of B-cells and thereby reducing the production of autoantibodies and the activation of T-cells. Rituximab is a genetically engineered antibody directed against a surface marker found on B-cells. When given intravenously, it causes a depletion of B-cells.

Studies of rituximab in persons with RA and SLE are showing promise. In RA, measures of joint inflammation and RF levels improved over a 6-month period with a favourable safety profile. Some patients experienced fever, rash and/or itchiness. In SLE, measures of disease activity improved but there was no consistent reduction in the level of anti-DNA autoantibodies. More studies are needed to determine the optimum dosage schedule, the need for co-administration of other drugs like methotrexate, the full spectrum of adverse side-effects and if the benefits are sustained.

The present dosage schedule is 2 intravenous injections 2 weeks apart in combination with methotrexate and a short 2 week course of corticosteroids. The results after 1 year demonstrate similar efficacy to the TNF blockers (e.g. etanercept and infliximab) despite only 2 injections and no additional therapy other than continuing methotexate. Although profound B cell depletion occurs for up to 2 years in some patients, the levels of immunoglobulins (antibodies) were only slightly reduced. However there was a substantial decrease in the concentrations of rheumatoid factor in the blood. Safety was not a problem but only 40 patients per group were evaluated. Recall that 350,000 patients have already been treated with Rituximab for lymphoma. The cost of rituximab will be about $ 9000 (Canadian) per year, almost half the cost of the TNF blockers.

Trials of this drug are starting in several major centres across Canada.

Answered on: November 12, 2003 "



again Raglet, wishing you best with this,
Anisah
:flowers:

[raggedyann1]

Anisah and Raglet,

I was at my rheumatologist today and saw a flyer on his door that said that rituxan is approved in the United States for Lupus in May 2005. It also listed another drug that is supposed to be similar to rituxan with fewer side effects, I forgot to write the name down. In trying to google it I came up with 2 possibilities Cetuximab or alemtuzumab. However I may be completely off base on the 2nd drug. This alternate drug has also been approved for use with lupus patients in May 2005.
I thought of both of you when I saw the flyer and hope that the same approval has happened or will happen soon in Canada and New Zealand.

I did not get a chance to ask the doc about them as we were busy with my scleroderma flare up.

Karen

[Anisah]

Thanks Karen! :goodvibes:

I have an appointment with my Rheumy tomorrow so I will mention it. I'm not sure if it will make a difference for me right now in Canada - but it may once it is approved in the US in May. I'll ask my Rheumy anyway!

I hope you start feeling better yourself. :love:

take care,
Anisah
:flowers:

[bananawear]

Hi there - I am planning to ask about this at my next appointment as well. My rheumy has insisted upon doing everything possible to keep me off cytoxan for my CNS involvement and so far I have not been impressed at all with the methotrexate injection results over the past three months. I'm going to see how she feels about this new drug and if it might be an option for me and my situation. I know she wanted me to give the metho at least 6 months of a chance to make a difference so I guess I will wait that out and see -

Hopefully this drug will give us some new hope.

Take good care- Chris

[rockys_hope]

My rhuemy told me about it at the last several visits. Here in the US it has not been approved yet. We have written letters but to no avail as the US is funny without FDA approval.

Let us know how it goes.

[Mrs H]

Hi there,

If this drug is also called Rituximab (used for cancer treatment), then i have had it.

No other drugs were working and needed to get pred. dose down. Have had 3 infusions now and is working well, Dr is very pleased.

need it about every 4 months through an IV.

Hope this helps

[jjpick]

Hi there,
I too have been recommended to take Rituxan for my Lupus. I have had two serious bouts of hemolytic anemia and the doctors think it will work for both the lupus and the anemia. I currently take Cellcept and am on 10 mg. of Prednisone. Have tried many other meds for the Lupus but have had to stop due to side effects. I fear I may have to stop the Cellcept again because my white count and H/H are dropping again.
Would like to hear from other members who may have taken the drug or know someone who has.
Please feel free to email me at bigkatfan@comcast.net. Please put Rituxan iin the subject line so I know not to delete the email!
Thanks in advance for any info.
jjpick

[Mrs H]

Me again!

For those considering taking this drug - 'touch wood' i have had no side effects from the Rituximab. However my Dr is very careful and i usually spend a couple of nights in hospital and have blood pressure taken every 15 mins for couple of hours after infusion.

Dont feel any different after having it, but have been on high steroids...as they reduce may feel some?

am very happy with the drug and due some more in a month or so....

Mrs H

[mumsy613]

Hi
Yesterday was my third full Rituxan treatment (out of four). I had an allergic rx to the first, so it had to be stopped and redone a week later. Each treatment is premedicated with tylenol (tablets), 25mg Benadryl I.V., and 200mg Methylprednisilone I.V.

I have had "fake flu" symptoms following the first two, but this time none at all. Symptoms were mild fever, headache, swollen glands (neck), "raw" chest. I am told this is unusual, but there they are. Symptoms peaked about two days after I.V., then diminished thru the week. My scalp itches like mad.

Immediately following the first infusion, bleeds stopped, no new bruising, and old bruises began to go away. For several weeks prior, I had a generalized edema with pitting below the knees. This has been resolving slowly. Pancreas inflammation stopped immediately. All abdominal symptoms have cleared up. Lungs are functioning better as well.

My fingers are crossed that all this good news is not a result of the 200mg methylpred premed I get prior to each treatment.

I have my final treatment Monday, along with labs. My doctor is tracking the CD markers on B cells to see how they are doing....every six weeks for six months.

I am happy to exchange email with anyone regarding this. Please put "lupus" in the subject line so I won't mistake you for spam. My email is mumsy613@yahoo.com

Good luck to all....Fran