Rituximab

[65_women]

I’m taking Rituximab for RA and also have myasthenia gravis.The Rituximab has worked well for me for both RA and MG.

My question is that I take every 6months with an infusion has anyone asked they RA doctor if you could go longer be fore the next infusion . I feel I could go longer than 6 months ?

[Lolabridge]

Hello. I’m on Rituximab for RA too but I don’t have MG.I had to wait 9 months for my last infusion and it will be the same interval before my next one. My consultant always reviews my symptoms and blood test results in discussion with me before we agree whether the time is right for my next infusion. Then he authorises the infusion.

How is it done with you? Are your CRP or ESR levels rising?

[Neonkittie17]

I went over a year as a result of the pandemic but I can often go a long time around 11-12 months before the B cells repopulate and then sometimes it’s 7-8 months. If you know you can get in for an infusion quite easily then you can wait until you feel your R.A. returning or if you go downhill and don’t want to chance it you can ask to go every 6 months if that’s your Rtx pattern. I used to ask to go every 6 months when they only had 3 infusion places/seats and once they left me for 7 weeks and I flared horribly but now I know I can go as soon as 1-2 weeks at present. My nurse pencils me in for the next infusion as I leave and I let her know nearer them time if it’s looking like I’ll go then or I can last longer. We review blood tests 3 monthly on the phone. If you feel your joints are doing well and your blood tests are good and no inflammation creeping back then you may feel confident to go longer. I did but it took some time to do that. x

[65_women in reply to Neonkittie17]

Thank you rpreplying

[Neonkittie17 in reply to 65_women]

You’re welcome

[AgedCrone]

Yes you can try to go longer between infusions & many people do manage to go much longer...but it’s a very individual decision.I have been on Rtx since 2016....have tried to go longer...but can only manage 7 months comfortably......but I have dropped to only one infusion each time, & I haven’t noticed any difference.

If you are still having two infusions every 6 months..why don’t you ask if you can have just one to test the waters?

[65_women in reply to AgedCrone]

I feel the same but have to say nervous about it I pray that our health system keep going.

[Olwensharpe]

Hi 65.womenI have been very lucky with rituximab, having had RA for over forty years this was the only drug which has sent me into remission, I had the drug when my blood test said my ESR and CRP were rising, so I just assume your doctors will know when you are ready to reduce the drug, I have been in remission now for five years, but the vaccine seems to have ended that but hopefully, it will be under control ASaP.

Good luck with the drug you take care

[65_women in reply to Olwensharpe]

Glad to hear you are in remission take care.

[Jetxav]

Hi It is wonderful that the Rituximab works for you and nice to hear something positive. I have tried the infusions too a few years ago but it had no effect at all sadly. I did feel disappointed as a chap near me in the ward said he felt great after the infusion. I had no effect until the second one, which was either four or six months later, and caused quite a reaction for me. Most drugs have not suited me, although azothioprine was fine for some years and then Mycophenolate, which I had for about five years until a year ago. I am not sure it helped but then we never really know. The Consultant left and I waited many months while they tried to find another one but I have only actually seen her once in eighteen months and have had no medication for RA since. Best of luck to you.

[65_women]

jerxav I pray that you will find a drug that will work for you.There are many out there for RA.

Take Care