Rituxan / Rituximab -- gastrointestinal side effects or coinciding viral infection?

[michichgo]

I was diagnosed with MPA in 2013. I was brought into remission with cyclophosphamide and prednisone but I've been receiving Rituxan infusions bi-annually for the past 2.5 years, as the drug seems to keep systemic issues in check.

In late 2016, about 7 days post-infusion, I began to suffer gastrointestinal issues that worsened over the course of several days until I went to the emergency room, suffering from dehydration; the result of days of nausea, vomiting, diarrhea, and a fever. I was rehydrated, medicated and sent home. The same scenario played-out after my May, 2017 infusions.

My nephrologist & rheumatologist decided to continue the Rituxan regimen but at a reduced dosage. The new dosing seemed to work to my benefit and my second round of infusions in 2017 left me symptom-free (however methylprednisolone was added to my medications to combat joint pain).

I underwent my first of two infusions this past Monday. I awoke the following day feeling all those really icky things mentioned above and I spent six hours in the emergency room again last night. It's happened, again.

Coincidence or side effect?

I'm so confused and frightened. What to do, what to do?

I appreciate your thoughts.

Your friend,

Michele

[paullevans]

Hi Michichgo I definatly agree there are many side effects with retuximab have had a lot of gastro intestinal problems stomach pain and constant diarrhea dehydrating over past year since having retuximab infusion and recently diagnosed with haetis hernia and barratts osophagus burning and painfull legs and back in musclesand joints

[Christophene47]

Hi michichgo, I don't blame you for feeling frightened and confused. It seems as though the Rituxan infusions were working for you since 2016, and to be symptom free in 2017. Wow! I am on Prednisone and Methotrexate, and feel worse and more limited than when I first sought rheumatological care in late 2016. So it seems like going on Rituxan is the end of the line for me. I am C-ANCA /PR3 + hence Granulomatosiis Polyangetitis, still with muscle pain and weakness all over, lots of skin problems. Starting with a new rheumatologist next week.

Am wondering if something has changed in your diet, water intake, stress level, or if the disease is now turned to attacking your GI system. You are your own best doctor. When something doesn't feel right, chances are they aren't. I would ask your doctor about stopping the infusions, at least temporarily, see if these GI symptoms go away when you are off, and in the meantime ask for a referral to see a GI consultant. Keep yourself well hydrated; diarrhea is the body's way of detoxifying itself from something.

Think if there is anything you are doing differently in your life, any new meds unrelated to MPA,etc., sun exposure. Any new foods? New Vitamins or supplements; pets even, a tick or insect bite???? Recent travel?

I had a very effective NSAID , Naproxyn , turn against me after 10 years; controlling back pain well, but starting getting skin blisters and 2 attacks of gastritis resulting in 2 visits to the ER also, needing IV Pepcid and Reglan to calm stomach down. It took dermatologists 2 years to figure out that the skin blistering was caused by a biochemical interaction between sun exposure at the beach every weekend and the Naproxyn. Stopped the Naproxyn, stressful situations calmed down, and symptoms never returned.

If you don't want to stop your infusions, you might ask for an anti diarrhea med to take before the infusion such as Immodium, Lomotil, Pepto Bismol and there must be others. I get a moderate amount of diarrhea after I take methotrexate for a few days after, but no pain or cramping, and it is listed in known side effects so I don't worry much.

Another possibility is that you picked up a tummy virus recently, being immunosuppressed, and the Rituxan and a possible virus are not getting along. We all know that all chemo drugs cause nausea, vomiting and diarrhea, but pts. put up with it for the greater good in the end.

If it happens again, you need to address it with your consultant for sure. Let us know how you got better... All the best.

[michichgo in reply to Christophene47]

Thanks, Christophene for your input.

It becomes overwhelming sometimes dealing with the disease and its treatment. One positive about being out of the work force is I can say that there are no changes to my diet and/or lifestyle. Issues seem to stem from the infusions but I'm not throwing in the towel just yet. I think supplemental anti-nausea/diarrhea meds will help.

I see my nephrologist on Monday and we'll talk it through.

Be well, my friend.