No Rituxan for me

[Jaylowdancer]

So two weeks ago my doctor decided to take me off of Cellcept and put me on methotrexate and start Rituxan infusions. I read all the info on the infusion and was happy that this med might help with my MCTD, RA and Lung Disease. Unfortunately, i tested positive for Jc virus. Which may cause MS or symptoms of it and may cause brain disease or something like it.

What other meds can be taken instead of Rituxan? Ibreally want to get better soon and not have my MCTD progress in my lungs anymore.

[Hidden]

I suppose this is really a question for your rheumatogist but I do sympathise - sorry that Mycophenolate/ Celcept isn't doing enough for you to prevent lung deterioration. I don't have a lung condition so can't advise but i do hope others here or on the NRAS HU can tell you of alternatives to Rituximab that have helped them or those they know.

[Mellisa1066]

Hi

I have MCTD

Lupus, Sjogrens syndrome, Arthritis caused by MCTD also lung nerve issues , reoccuring pericarditis and other organ damage and issues. So im also only able to take acouple of bio infusions as it can make the some of the MCTD worse.

I did try Rituximab and had a severe reaction. Im now on my last option which is adaptacept 4weekly infusions.

I know we may be different but maybe ask about this bio infusion and see if its any good for you , I know different areas are strick on what bio infusions they can give due to expense too . It is a 4weekly infusion but only takes 30-45mins. Ive got on well so far. Like most bio infusions they are mainly for joints but can help other MCTD.

I Hope ive been some help, may be worth asking about this bio infusion with your Rheumy Consultant. Good luck

[Jaylowdancer in reply to Mellisa1066]

Thank you. Im going to see my reumy this week and will definitely ask her about that bio infusion if it is available for me.

[Maureenpearl]

Hi jaylowdancer, I also have MCTD with damaged lungs (pulmonary fibrosis) I would like to now in which way it has affected your lungs.

I was give all of the above meds but nothing helped so far. Had Rituximab infusions a few times and the last lot was Oct/November 16 but this last time it only made me ill instead of improving my condition.

Praying the right medication and cure will be found soon.

God bless.

Maureen 💐🙏

[Jaylowdancer in reply to Maureenpearl]

Hi maureenpearl, I have Non Specific Interstitial Pneumonia and interstitial Lung disease. Basically i have the same thing you have. Im hoping the meds work for me. My first dose will be on May 12. Im concerned about the side effects the one concerning MS and Brain damage.

Have they told you about this? How many infusions have you had before feeling ill? Is itbworth it to try?

[Maureenpearl in reply to Jaylowdancer]

Hi jaylowdancer, I wasn't told about MS but I was told that if I get confused or a high temperature I should seek medical help (which I wouldn't be able to do if I was confused)😊 because if could be brain damage because of the side effect caused by the infusion.

I had three courses of the infusion from June 2015 to November 2016. I felt great after the first course (two infusion) almost straight away, the next course took a little longer before I felt okay and when I did I asked the consultant if I couldn't have the next course before I started to feel awful but I was told I have to be feeling awful to be given it again.

I still had to use ambulatory oxygen and it has not helped in improving the damage to my lungs.

Hope you have great success with it. Praying all goes well for you.

God bless.

Maureen👍💐🙏