Hi all, i haven't been on in a while as I'm so unwell as always. Things have been horrific. I tried plaquenil for neurosjogrens before December. Had a UTI, went on antibiotics then developed awful colitis. Stopped plaquenil.
Started high dose steroids which made me feel good in Jan. Came down dose and started cellcept. As tapered down from steroids my head did not feel right not did my neck. I suddenly have the worst sinus pain nerve pain throughout my head and neck with severe dizziness confusion and felt like I wanted it all to end tbh. Went to A and E as was so sure something serious was happening. Had no temp as always so sent home with no investigation whilst my neck and head were being eaten alive. Went back to gp who did swab confirming streptycoccal pneuminia. That has invited autoimmunity in my neck and it's horrific agony there now. My A.S is very active but so much going on I'm confused.
On antibiotics. I don't know what to do. I'm too scared to go back on cellcept. This has all made me ten times worse. My A.S seems to be causing alot of problems. Do I just try enbrel again. I'm out of options.
They will not give me ivig again to try not will it help the A.S. There's no one treatment to help it all. Feel like all hope is gone

So sorry to hear you haven't been doing well. It sounds like you got off to a rough start with the UTI. I hope you don't think the Plaquenil caused the colitis. It is probably more common that the antibiotics caused this. Although Plaquenil can cause stomach issues, being you were on the antibiotic, I'd blame that first and try the Plaquenil again when you are free from infection. Keep in mind that it takes months to see if Plaquenil will work...3-6 months. It is typically a safe drug...but make sure to follow up with eye checks.

I'm super surprised they started Cellcept while you were having an infection.
Maybe I misunderstood.

Honestly, I'd get these infections under control and try the Plaquenil again.

Before starting Cellcept again (if you even try it again), get your immune system checked...IgG, IgA, IgE, IgM, levels and even IgG subclasses. You need to make sure your immune system isn't already suppressed...as many with Sjogren's also have CVID (common variable immune deficiency).

Thankyou en bloc! I started cellcept before the infection. I will definitely ask to be checked for cvid now. If positive for cvid would that mean you can't take cellcept do you know? I'm actually scared to take that after how bad I've been. It's caused lasting issues with my head.
Yes the antibiotics must be the link. I noticed secind time on them the colitis came back.

If you have CVID, then treating with ANY immune suppressors is tricky and must be done very carefully. I have specifically avoided going back on Cellcept and other immune suppressor for this reason. I had taken Cellcept for about 3 months when I got a life-threatening infection that required emergency surgery. Took me MONTHS to recover.

It's just best to know about your immune system before starting to deplete it with meds like this. Cellcept did help me during the time I took it...so I know it has benefits. it's just not a good drug for me with my CVID.

BTW, the colitis might actually be C-Diff...which is VERY contagious and VERY dangerous. It is most often caused by antibiotics and causes severe diarrhea. There is a simple test to check if it is C-Diff. If it happens again, please asked to be checked.

Adding a bit to what en bloc wrote:

If your colitis has arisen from a C. difficile infection, it can be resistant to antibiotics.

Should this be the case then a fecal transplant (using stool material from somebody who is not infected) is about 85% to 90% effective in those for whom antibiotics have not worked.

This might be worth discussing with your doctors.

A reminder OTC D-Mannose taken daily prevents UTIs.

Non-Antibiotic Prophylaxis for Urinary Tract Infections

Non-surgical management of recurrent urinary tract infections in women

Regards, ElaineD