Is anyone on Rituximab and Coumadin ???

[Karenj]

[daisy11]

I use to have Rituximab, but unfortunately did not work, however that was for the ITP, I had about 4 courses, although my platelets rose a little nothing really. Currently on Clex and Warfarin.

[Karenj in reply to daisy11]

Thank you Daisy for your reply....

[paddyandlin]

Hi Karen,

welcome to the group are you taking any of the above or looking at taking them? I am on warferin.

Paddy

[Karenj in reply to paddyandlin]

Hi Paddy,

Thank you for the welcome, i have been on coumadin, lovenox, baby aspirin [sometimes all of them combined] for a very long time.

My Hemo, said he would like for me to start on the Rituximab along with the Coumadin to help in preventing further clots and bleeds. I have a history of clotting..even though my INR was between 3.5-4.0

After reading up on Rituximab and antiphospholipid ...I am scared to try it ..

I am hoping someone may have tried this combo and was doing fine..

thank you again ... Karen

[paddyandlin]

Hi Karen,

I think if you are that worried have you brought this up with your doctor? I think if you still clot at 3.5 4.0 i can see in a way what your doc is saying which is instead of taking a mixture of pills let take 2 which do the job of all of them. I am sorry to say i have not used Rituximab but i know some one on this group did will see if i can find them. Do not worry karen at the end of the day you can reverse the drugs asap with Vit K and these drugs are stronger so they may help.

Please speak to your doc and it may be worth speaking to Kate at HSF and see what they say the site is hughe-syndrome.org

cheers

paddy

[Karenj in reply to paddyandlin]

Hi Paddy, I did speak with my Doctor. I told him my concerns and he told me his concerns and I asked if I could take some time to think it over. I thought if I could just talk to someone who has tried it I would feel more comfortable.

I'm so glad I came here.... Thank you, Karen

[ltsmagic]

Yes, the first time, I came home and all of my swelling(hands, neck, schoulders. and ribcage) was noticably gone. I was so happy with it, I was so looking forward toward my next Infusion. The next round of Rituxin did nothing, so I don't know what to expect the next time. I am hopping for the first experience I had.

[Karenj in reply to ltsmagic]

Dear Itsmagic, Thank you for your reply!!! I was hoping to hear something like that..If my swelling went away after the first infusion I would be so happy!!

Did it stay away? How ofter do you have them? Sorry for all the questions I have so many I would like to ask...Thank you again for your reply.. Karen

[ltsmagic in reply to Karenj]

Yes, the swelling is much better now, I have infusions every 6 months,I am also on Plaquenil, and Methotrxate. This combonation seems to be working for me. I hope this helps

[ltespain]

Hi Karen

I have now done 3 cycles of infusions of Rituximab and have been taking the spanish versions of coumadin for many years.

The first cycle of 2 infusions was incredible - about 8 weeks after the first infusion I suddenly found I had significantly less pain from the arthritis from Sjogrens, a lot more energy and felt generally a lot better. That being relative to the fact that before the infusions I was barely able to do anything.

The second cycle was exactly 6 months later and increased all the good to the point that after 10 years unable to work I went back to work in September full time and thus far am coping.

The third cycle was 9 months after the second and was just before Christmas and again there is a notable benefit thus far which is that I am recovering to the point that my INR has now been stable for 2 months after 4 years of never ending problems. It's not possible to state that it is due to the Rituximab but having noted that we had to increase my INR range as I got sicker we now are decreasing my INR range as I get better.

So for me Rituximab has literally been a life saver and I have regained my life to such an extent that I can only thank hospital board who felt I was a worthy candidate to get the treatment as here it is not available to many of us due to the cost and the fact it is being used outside of normal use.

The one thing is that it does worry me as there are many contraindications for using it with APS, Sjogrens and Lupus but because of that my medical team keep me closer than ever and I can walk into their offices the minute I notice a problem.

Apologies for the long reply but hope that my experience is helpful in making your decision as I was equally scared before we stared as have young children and needed to know I wasn't going to end up with more problems than I started with. One thing I do know is that Professor Hughes is very positive about Rituximab and believes it has a place in the treatment of APS such that it should be considered alongside standard treatments.

Good luck whatever you decide.

Louise

[Karenj in reply to ltespain]

Dear Louise,

First of all.. Thank you for taking the time and effort to write such a detailed letter for me... your letter has covered every fear and concern that I have felt... I too have not been well in a long time and I have a disabled son who is depended on me... my biggest fear was what if this makes me worse.

Your experience has been very helpful, It is nice to read positive reports and to hear that Professor Hughes believes it has a place in the treatment of APLS. (This takes a lot of the fear away)

I cannot thank you enough and this forum for all the help and support that I have received ....

Thank you, Karen