Rituxan

[Gigi]

Who has tried rituxan, and how has it helped you?   ( or not)

This may be my next step if insurance approves. I'm in sooo much pain and exhausted. Some days I wonder if I can make it through another day. I'm sure everyone has those days though.


Thank you all for any advice or anythg new that is working for you.


Gigi

[rnathans]

I just started rituxan last month. 2 doses 2 weeks apart. I am doing it mostly for my gastroparesis and muscle weakness though fatigue is an issue as well. I was on cytoxan to suppress my immune system a few times for these same issues and it worked but I have maxed out on the safe use of cytoxan. It is hoped rituxan will work as well.

The good news is I tolerated it very well. It will take awhile to see if it works,especially given that my main issues are nerve related and they take awhile to regenerate.

[Gigi]

Thanks , I hope it works well for you. Keep me posted. I am glad you tolerated it well. That was a concern of mine.

Take care,
Gigi

[Jasper]

I have been on Rituximab since January of 2016. I received 1000 mg Rituximab  IV infusion on day 1 and day 15. Then I have received the same regimen of 2 doses 2 weeks apart every 24 weeks starting from day 1. So I have now received a total of 8 infusions, my last set of 2 infusions being in July 2017. My next 2 infusions will be Dec. 28th and Jan. 11th.

I started noticing some improvement within 5 weeks of the first infusion. As the weeks passed I noticed more and more improvement, with the most improvement being during the middle 16 weeks of the 24 week cycle.

I have had vast improvement in fatigue levels and in cognitive function. My peripheral neuropathy is greatly improved. My saliva flow has improved dramatically. The saliva flow improvement takes a bit longer to notice, but by the second set of infusions it was quite noticeable. Joint pain has decreased considerably. I don't notice a difference in my eyes but my opthamologist says they look the best he has ever seen them. I still need Rerstasis drops, though.

Rituximab has helped me immensely and it has given me back a life. I am not back to pre-Sjogren's level of functioning and feeling, but I am vastly improved and I now have a life. For that I am very thankful.

[susanep]

I am so happy for you that it is helping you so much.

I wish I could try that, but don't know if my medicare would qualify for getting it.

I hope and pray it continues to help you have a better quality of life.

susanep

[Jasper]

Susan, you have Rheumatoid Arthritis. Rituximab is FDA approved for Rheumatoid Arthritis. If I were you, I would ask my Rheumatologist about trying Rituximab infusions. It has been a miracle medication for me.

[Gigi]

Do you still take plaquenil? Have you found it to be helpful?

I pray I can get the rituxan. 

Are you more susceptible to getting viruses, etc. while on rituxan?

Sorry for all the questions.

[Jasper]

Gigi ..... yes, I still take Plaquenil.

Yes, Rituxan is an immune suppressant so a person is more susceptible to infections and viruses.

I am up to date on all vaccines including influenza, pneumonia (both vaccines for pneumonia), Shingles, Hepatitis  A and B, etc. Both I amd my Rheumatologist wanted me up to date on all vaccines before starting immune suppressants.

I try to avoid people who are sick. I also avoid large groups of people in enclosed places (as much as possible).

I try to visit people with kids during the summer when windows are open or people are outside. I try to avoid closed up homes during the winter, especially if there are kids around because kids always have something.

I am not shy about asking if anyone is ill and I decline the invitation if anyone is ill.

I did get Shingles once while I was on Cellcept and once while I was on Rituxan. I keep a supply of Valtrex on hand to start immediately at the first sign of Shingles. I also got an abscess while on Cellcept.

Other than the above mentioned incidents, I have remained healthy.

Rituxan has been such a wonderful drug for me and has given me back a life so, for me, the risk is well worth it. I never want to return to the condition I was in prior to starting Rituximab.

[Gigi]

I am a teacher so I kind of worry about the germs, but then again I've been exposed to a lot of germs over the years . It's prob how I got this disease. I'm still waiting on insurance . I'm at the point Id try anythg.  I'm in a lot of pain and exhausted.

Praying I hear good news soon .

Thank you for replying. Sometimes I feel so alone bec nobody can understand what I'm going through.

[Sharon]

The right biological can make all the difference Gigi.
I know how you feel! This disease is rough on us.
I'm on Orencia which helps the pain and I believe the fatigue as well (but not sicca).
Getting on it was the best decision I've made, though I really need something for the sicca symptoms.
If you can get it, I would try the Rituximab which has the best track record so far for SS.