Feel Terrible

[LSurtees]

Hey all,

Sorry not been on here for a while, back at work full time and trying to manage all appts etc.

I had my Rituximab last month and since I have slowly been declining, I am so drained, body aches, no voice, chest feeling heavy, eyes itching, sore throat, sores on my nose and mouth and the night sweats are just awful. Is this a flare? I really don't know what to do with myself.

Any advice is greatly appreciated.

Thank you

Linds

[PMRpro]

I assume you have reported this to your medical team?

[LSurtees in reply to PMRpro]

Hi

I have spoken to them and I had a steroid injection yesterday to try reduce the flare x

[PMRpro in reply to LSurtees]

Good - hope it works.

[Hidden]

Hi lsurtees yes it does sound like a flare you need to speak with your gp. You've probably over done things and need to take it slow. Hope you get well soon.

[Maureenpearl]

I had Rituximab in November and had a very busy Christmas and New Year and since then i've had two lots of chest infections.

At the moment I'm feeling very fatigued and sleeping every time I sit down. Awful chest pains since weekend which led my GP to send me to A&E Wednesday. I had blood test which were all within normal range. ECG okay and chest X-ray show my right lung worst than about three weeks ago.

I wasn't kept in hospital which I didn't mind, I was given an appointment to see a Pulmonary Consultant on the 19th (I have Pulmonary Fibrosis) brought on by the MCTD. I was also told to go home and rest.

Please rest so that your B cells have a chance to grow back.

All the best

Maureen

[Melba1]

Hello, I had my rituximab 2 weeks ago and have been feeling similar to you. I was flaring badly at the time so I can’t work out whether it’s still the flare, the effects of the rituximab or a combination. I suspect it’s a combination as some things are much worse after the rituximab (chest pain, palpitations, itchy eyes, higher fever) and some are the same from the flare (brain and nervous system difficulties, severe fatigue).

I’m back on Tuesday for my next one and a bit worried about admitting the chest problems as really want the next dose!

Have you told your GP/ rheumy how you feel? Have you got other treatment besides the rituximab? I think it takes a few weeks to work so hopefully we will be feeling much better soon but you should tell them how you feel in case they can do anything in the meantime.

Hope you feel better soon

X

[Melba1]

PS - maybe have some time off work?? My rheumy was very clear I shouldn’t be working as if we keep pushing our bodies they will take longer to recover x

[LSurtees]

They gave me a steroid injection yesterday to try reduce the flare symptoms