When will Rituximab start to work?

[scorpiojack]

Hi its been 6 weeks since my ritux infusion and whilst at first I didn't feel any different, now i'm in more pain than ever! Is it the norm to feel worse before you feel better? or should I be concerned? I have always been very mobile, but three nights ago had the most excruciating pain and swelling in my left leg/foot and have since been hobbling around. Very worrying. will get in contact with my rheumy after the weekend, just wondering if anyone experiencing this on Rituximab?

[AgedCrone]

I've been on RTX since 2016.... It took at least 3/4 months before I felt any better,& now it's working well.

But no, I didn't have any new symptoms when I was first taking it.

You had better have a word with your Rheumy nurse on Monday.....are you sure you didn't knock or twist your ankle? Ankle sprains often swell up when the leg is elevated & the weight is taken off.

[scorpiojack in reply to AgedCrone]

Hi, I haven't knocked my ankle to my knowledge, it just came from nowhere.. Maybe a very bad flare? Been pretty good lately, so forgot how bad they can be! Thank you.

[TeddyT]

I have been on RTX for 9 years - it took a while to start working, it was a total game changer for me. Unfortunately, I have to come off it as my B Cells are very low and it is now not as effective. Good luck

[scorpiojack in reply to TeddyT]

Hi That sounds promising! So rubbish that you have to come off it now! The best of luck with your continuing search for a pain free life. Fingers crossed for you. x

[Tessthomy]

Hi Scorpio jack. I asked this q a few weeks ago when I had had my first set of Rituximab and I totally know where you’re coming from.

If you look at my bio you will see i received a whole load of answers.

I am now 2 weeks off the 12 week marker. I’ve seen my wonderful consultant and she has said it takes upto 12 weeks for the first set to work.

I have had two lots of “emergency steroids” of which I am tapering down to 1 x 2.5 mg from next week to the d day when 12 weeks is up.

Funny enough I too had a terrible flare (about 6 weeks in) of my ankle which meant a set back and back onto a bigger dose of steroids.

The consultant has advised by 12 weeks they will know if it’s worked or not and if it has I will know about it!

They may do another set in December (6 months from first set) if it has worked and if I need it BUT if it hasn’t worked (which the consultant is confident it will due to the nature of my RA) then they will re think another form of drug of which, there are many to try.

I hope this helps. Hang on in there. I have to say I THINK ... it’s working for me ... but won’t know until 12 weeks is up and fully off the steroids. GOOD LUCK TTx

[scorpiojack in reply to Tessthomy]

Hi TT, yes I'm hoping it works, I have tried so many already and I'm a bit fed up of feeling ill when I change over! I will ring rheumy tomorrow and see if I can go in for a steroid injection to stave off the pain til something happens.. ! Thank you for reply. Im quite upbeat so will weather the storm … for now.. xx

[GranAmie]

I had my first pair of infusions on 23 july and then 08 august and was told it wd be up to 12-14 wks b4 i wd see any realchanges. the 1st infusion knocked me for 6 for abt ten days, the 2nd was easier tho still a bit light headed. Did you get 2 infusions ok, abt 2wks apart?. pleease get yr ankle checked out asap.. and good luck

[bigtfrancis1]

i had 15 rounds of 2-1 gram doses ,a total of 30 infusions in 2012, i really didnt think it did anything ,but my arthritis is now under control using a natural medicine.What the rituximab did do was make my teeth fall out , About around 2014 my teeth started breaking off and absolutely no pain, I went to an oral surgeon and he told me the roots had detached from the nerves because of the rituximab, he had seen it over and over. I had to have 21 root extractions to prepare for dentures.this is a very powerful drug with alot of side effects, please be careful upon accepting this treatment , also at the time a dose was 1 gram and they were billing my ins. over $11000 per dose,crazy, my total bill was over $300,000 for all the infusions.Have a wonderful day.