Rituximab 1 month ago

[Laura_dilcock]

Last year I had my first rituximab infusion and never got to have the second half as I got shingles so had to wait and start over. I finally tried again last month and managed to complete both infusions.

Ever since, I've had one bug after another and been in flare (like almost as bad as when first diagnosed).

Now I know they said it could take up to 12 weeks to start feeling positive effects but they never said it could get worse first.

So is what I'm feeling a coincidence? Has anyone else felt worse before they felt better (if so I feel they should have warned about the possibility) or should I just be thinking this treatment is not for me?

Any experience/advice/comments welcome

Thanks 🙂

[AgedCrone]

Hi Laura......I had a chest infection for the first time ever after the second infusion of my first Rtx duo........but it was a one off ...settled quickly ....& 3 years on I am now doing well enough to only need one infusion per year & I am hoping it will be even less. So things do get better.......

Having had Shingles will have put you back ...I found I had the after effects of that for a good year.

Now I am not 100% pain free 100% of the time but I’m willing to put up with any discomfort I do have rather than take additional drugs.

Please be careful about blaming RA drugs for every ache & snivel ...let’s face it- if our doctors told us we might get ear ache if we took X...we’d spend all our time expecting to get it.

So don’t pin your hopes on suddenly feeling how you hope to feel on the dot, at week 12, I reckon it took me almost double that to settle on Rtx.

I have always expected my latest drug to be my magic bullet...I really hope Rtx is it for me, & I don’t blame every new symptom on it.

So please expect Rtx to work for you, & even if you still have symptoms - get on with living your life.

If they are unbearable speak to your rheumy nurse & see if there is something that can be added to help things along.

Hope things kick in soon for you.

[Laura_dilcock in reply to AgedCrone]

Thanks for the advice. Am still currently taking all other meds while waiting for it to work so fingers crossed it works soon, can't wait to get off the steroids haha.

Will stop panicking for now and see how I go.

Thanks again x

[weathervane]

I had one infection after another when I started on rituximab, particularly chest and sinus . I now try to nip things in bud if I feel im getting a sore throat or sinus problems, i steam , gargle with salt and if i think im getting a cold i take 75g of zinc for a few days . I have had fewer problems because of this , it is an effort but it’s worth it , best wishes x

[Laura_dilcock in reply to weathervane]

Thanks for the advice, will definitely give the zinc a try 🙂

[Pulfs]

Sorry to hear your suffering but I've been having retuximab for last 6yrs with no problems after just the usual washed and tiredness for a couple of days after.

Did you have a chest x-ray before starting and a ct scan , I did and it showed4 enlarged lymph glands 3 in neck area. Had 1 in armpit which had to be removed and checked but not cancer but they were enlarged due to RA inflammation.

After another check all was ok to start on infusions xx