Newbie/Rituxan?

[Rabbit63]

Hello,

I am also newly diagnosed with Primary Sjogren's..  I've been on plaquenil since March of 2016.  In June I was diagnosed with stage II breast cancer and had 4 cycles of AC chemo.  Many of my Sjogren's symptoms went away during chemo, except it made my dry eyes and mouth worse.  I did not do radiation, but I am on herceptin and Tamoxifen



5 months post chemo and my Sjogren's symptoms are back and maybe actually a bit worse.  My Rheumatologist is suggesting Rituxan infusions. 

Is anyone willing to share their experience with Rituxan?  Did it help with your neuropathy or fatigue? I will be talking to my oncologist about it this week.  I am a bit worried about starting something new so soon after chemo.

[Joe S.]

Welcome to our forum, Rabbit63. I am sorry to hear about your cancer. I believe there are others here who have been through chemo. I am not one and my wife is not one. We have had our scares.

[Jasper]

I am on Rituximab. I started Rituximab in February of 2016 so I have had a total of 6 infusions (3 sets of infusions). You get 2 infusions, each of these 2 infusions 2 weeks apart, every 24 weeks.

I have had dramatic improvement in fatigue levels and energy levels. I have a life again.

My peripheral neuropathy symptoms have also improved considerably. I still have some burning in the feet and ankles but it is vastly improved from  what is was prior to Rituxan. Many of the other PN symptoms have disappeared.

Joint pain is improved. Saliva production is improved. Brain fog is considerably improved.

Rituxan has been a miracle drug for me.

My Rheumatologist is using Rituxan on more and more of her Sjogren's patients because she is seeing very good results.

You are very lucky to have a Rheumatologist who is willing to actually treat your Sjogren's Disease instead of just sitting back and letting you deteriorate and suffer.

If your Oncologist is okay with Rituxan I would surely try it if I were you.

[Rabbit63]

Thank you Joe and Jasper for writing.  I have had 3 Rheumatologist in 5 years.  The 3rd one has been the most proactive and has a fair number of Sjogren patients.  I really think that helps.

[Sharon]

Has anyone who took Rituximab had any improvement in AI-related allergic reactions?

[warmwaters]

I also did Rituxan, after trying a variety of other treatments.  I was not one of the success stories (minor improvement for 2 weeks, and then back to norm), but I would encourage people to try it if your doctor(s) think it appropriate, and you are willing to take on the risks (i.e. read the side effects).  It does seem to be effective for some.

Another Sjoggie patient, Julia, describes her experiences with it in her blog at reasonblywell.net.   She does a good job of explaining the process.