Rituximab

has anybody experienced flue like symptoms or fevers on Rituximab? Or chronic sinusitis?

[Mooka]

I had chronic sinusitis. The first time was after I finished cyclophosphamide but went into have many more when I was on rituximab. They invariably turned into chest infections. I’ve since had two sinus operations. They prescribed a steroid nasal spray and I was told to use neilmed nasal rinse. I had a really high temperature with this due to being immunosuppressed.

[Hidden in reply to Mooka]

That’s exactly what’s going on with me , chronic sinusitis is a nightmare although it doesn’t sound Mooka. I’m on my 3rd lot of antibiotics. I’m going this again, I’m speaking to Rhumatology later so I will probably just tell I’m not having the Rituximab. Thanks for the reply Mooka. 👍🏼

[Mooka in reply to Hidden]

It is awful and has put me in hospital in the past. I don’t think it was necessarily due to rituximab- mine started when I was on cyclophosphamide. Have you tried putting your head over a bowl of hot water and inhaling the steam? The neilmed does help enormously. Get it from Amazon or eBay and make your own solution as per the NHS website. I went on to get Bronchiectasis from so many infections. Good luck with whatever you decide.

[Hidden in reply to Mooka]

I have. Using steremar and sinus spray, my last covid booster at the beginning of June. The first covid jab gave me a massive fever, toilet stuff, called the ambulance and they didn’t believe it was the covid jab. Cyclophosphamide is a body destroyer Mooka !!🙈🙈. I can’t put myself through this sinusitis again. I need to stop and give myself a break from being very ill. Thanks Mooka. 👍🏼

[Mooka]

I hope you have a good appointment and you feel better soon.

[SusanEleven]

My docs are still sorting out if I do have vasculitis (got a lung biopsy coming in my near future). I’m tapered to a low dose of prednisone after 6 years of PMR but I have decades of sinus misery experience.

— I stopped getting countless sinus infections when I started using a Neti pot with saline solution twice a day. I mix up my own solution. A few years ago my ENT doctor wrote me a prescription for Budesonide, a steroid, that also gets added to the Neti pot now.

— Allergy season adds another level to the battle. I use Allegra 180 (fexofenadine) and Mucinex (guaifenesin) maximum strength extended release in allergy season (March through September for me). I also use a prescription nasal allergy drug (Azelastine HCI) during those months.

— I use a big bowl of hot water with a towel tent over my head and inhale steam for 10 minutes once/twice a day if things are still painful. Hot compresses and massaging/pressing the sinus areas also helps.

It’s a ridiculously time consuming job to keep my sinuses draining enough to avoid infections. But sinus infections are painful and exhausting. They always wore me out terribly. I’ve had only two in the last four years versus many per year prior to these efforts.

I don’t know if this is helpful at all but I hope so. I’m so sorry you have to deal with this.

[Hidden in reply to SusanEleven]

Thank you for your reply, I’ve had a nightmare with it, not had it before! There is no solace in knowing I’m not the only one to suffer with this. If we as patients didn’t take our own actions and show some bottle dealing with these things we would be stranded, Doctors unless specialists aren’t up to the job.