Rituxan

[Derry5959]

I'm new to the forum. I was diagnosed with Sjogrens in 2005. Since then my health has really went down. I was on Plaquenil, then methotraxate, and they tried me on Rituxan last year.  I was battling lung infectons and after getting the infusion my white blood count sky rocketed.  i was put back on plaquanil but my symptoms are getting worse. I stay in pain and I can't seem to get over UTIs. I am allergic to just about every antibiotic, except for one administered via IV. My doctor wants me to try Rituxan again. I'm a little scared but I am also to the point that I can't continue like this.  Any thoughts?

[bloodless]

I'm so sorry you're going through all that. Rituxan is a scary drug, but maybe the doc is right. You're suffering too much to continue like you are. I'll say a prayer for you. Let us know if the treatment helps.

[Derry5959]

Thank you so much for the prayers.  I will keep you updated on how it goes.

[Narablueeyes]

Oh Derry, I'm so sorry.  I've not had to try Rituxan so I know absolutely nothing about it.  I'll keep you in my thoughts and meditations.

[harrigan]

Hi Derry - I had my first infusion of Rituximab (I'm guessing it is the same thing?) last week and am having part 2 on 21st.

It is a big decision to go on these drugs, but when all else is failing and uncontrolled inflammation running riot, there is little choice.  I'm choosing to keep positive that this will work.  I hope you can come to a decision you feel at peace with.  Let us know how you get on xx Ailsa

[Derry5959]

Thanks. I will keep you updated. I had my first infusion today and I am scheduled for the next one on Dec 28th.  I hope yours goes well too.

[Chickpea]

Hi Derry

I just posted a reply to your first post so I didn't know you'd had the first infusion.   I hope you're feeling ok.

You mentioned recurring UTIs.  Has anyone suggested the possibility of Interstitial Cystitis?  It's common to get it alongside other autoimmune conditions and can mimic UTIs.  However, it needs to be treated differently:  antibiotics and cranberry juice are not helpful apparently. 

You can read up more about it by puttting 'cystitis' or 'interstitial cystitis' into the search box on the top right of the web page.

Thinking of you - Chickpea