NRAS
22,452 members26,189 posts

Counting down!

So I’m in terrible pain, beyond exhausted but counting down the days. Two weeks today will be my first Ritixumab infusion. So fingers crossed (if only I could cross them 😂) this will be the treatment that works for me.

In the mean time I’m gritting my teeth and carrying on regardless - but then I am known for being stubborn!

Wishing everyone hope for the future x

20 Replies
oldestnewest

Roll on the next few weeks. Its an excellent infusion ! Takes a while so take movies, mags, books, drinks!

2 likes
Reply

Thanks all tips greatfully received 😃

2 likes
Reply

I hope the rituximab makes a difference, it has worked for me . Best wishes for a big improvement in 2018 xx

3 likes
Reply

Thank you

Reply

It may be worth checking in with your rheumy nurse before the infusion to say how bad you feel as the ritux is not going to have any effect for a few weeks and they may be able to give extra steroids or something to help you for a few extra weeks. The first one does take a long time. Farm

3 likes
Reply

Thank you. Unfortunately I am what they call “refractory”at the moment I.e. nothing has worked so I am still on Methotrexate, hydroxy, steroids and pain killers and have been on Humira too. I have been waiting for what seems forever for something to work. I know it is potentially 8-10 weeks for it to kick in but I’m not sure I have any other options at the moment other than to survive and see. So stubborn and hope are my secret (and only) weapons.

2 likes
Reply

It takes such a long time to try treatment for it not to work. Had a rough time 4 years ago when it took nearly 2 years to get back on track even down to having to use a mobility scooter. Fortunately for me eventually abatacept worked after humira, ritux and toc never. Hope you get some relief. Farm

2 likes
Reply

Mtx as solo therapy stopped working for me as did Enbrel and Humira but Rituximab has worked very very well indeed. There are other options so never lose faith but have faith Rituximab will work! x

Reply

Great advice! I had my knee injected two years ago after my Infusions. They make you wait a full week and then you're ok to have the steroid injections whether in the bottom or joint but it does tide you over.

Reply

I’ve found “stubborn” can sometimes be helpful in relation to this dammed disease! There are times I know I’m only continuing to stand as I’m too stubborn to lay down to it.

However, it can only take us so far so I sincerely wish you the best with your infusions.

Marie

4 likes
Reply

If you lay down you might never get up again , so you are better to keep going while you can 🤪

3 likes
Reply

I have my fingers crossed that the Ritixumab is the drug for you!! Please keep us informed :)

2 likes
Reply

I so agree, stubborn has always been there for me, but so very much more since rd started. Its not going to beat us. Good on you. All the best.

2 likes
Reply

I was in the same condition as you prior to my first RTX infusion, & my rheumatologist took me off all drugs & gave me a hefty Depomedrone injection to calm things down, prior to my first RTX treatment.

It did take at least three months for the RTX to kick in & now...18 months later I am in "remission" with just the odd niggle, on 6 monthly infusions. It has literally transformed my life.

I sincerely hope it works as well for you!

2 likes
Reply

Good advice given already and I can't add anything except keep stubborn! It will help carry you until the ritux works. Everything crossed for you but my eyes

J

1 like
Reply

I have been on every drug there is. They work nd then fail within a year and a half. Rituxan is the only one that keeps working I have mine every four months but it is worth it the last one I was I was Axtwmra infusion and my blood pressure went way up they immediately got me on Rituxan and it seemed to work within a week or two I pray that happen for you it is awful to be in pain

1 like
Reply

I meant Actemra infusion. Sometimes I hate spell check.

1 like
Reply

Thank you everyone- it is all this support that keeps me going 😃 x

Reply

I can confirm that I now can cross my fingers after Rituximab and I hope you will too! 😁 Good luck .. It takes about 8 weeks before you feel a real improvement and often a bit longer but I'm sure you will. xx

1 like
Reply

First infusion completed - all went well no reactions just a bit weary tonight.

Now I must not be inpatient for it to work (I believe 8-12 weeks ish) - I now have no worries about 2nd infusion in two weeks.

Thanks everyone for your support x

Reply

You may also like...