rituximab and filgotinib

[tamnwill]

anyone any experience with either of these two drugs please? I’m on tocilizumab but it’s effectiveness is waning and I’ve been offered these as an alternative.

I have anti-ccp positive RA, Fibromyalgia and osteoporosis. Diagnosed in 2003.

[KittyJ]

if you put them into the search box and filter for NRAS then all the past posts about them will come up 😊

[Lolabridge]

Sorry to hear Tocilizumab is not working for you now - I'm about to try it out!

I've been on Rituximab biosimilars (Truxima and Rixathon) and it has really worked very well for me for several years. It is a bit of a sledgehammer on one's immune system, and my immunoglobulin levels are now very low, which is why my consultant wants me to try switching to Toc.

I suggest you ask your consultant for further advice and wish you good luck with whichever you decide to try.

[Amnesiac3637]

Hi there. I had Rituximab for three years and after a slow start - took over five months to make a difference - it worked well. Then came my usual downfall with all these drugs, it started to poison me so had to come off it. Doesn’t mean it’ll do the same to you!

Having been on Baricitinib which again worked brilliantly -best drug I’ve had in many - it stopped working after I got Covid. Tocilizumab, the follow-on didn’t work at all and I had horrible side effects so am just about to start on Filgotinib which is very similar in the way it works to Baricitinib and I therefore have high hopes and fingers firmly laid side by side (crossing, nah).

If I have the choice, and luckily I have had, I would go for the Jak inhibitors. They are tablets, have a very short half life so if they don’t suit you they’re out of your system pronto. I had no side effects from the first Jak and many others on this forum have done really well on them. Rituximab is by infusion and stays a long time in your body but of course, it’s entirely up to you.

There’s lots of info about both drugs you’ve been offered and your rheumatologist will put you on the one they think best fits your circumstances. We’re all very different and we react very differently to drugs so I’d definitely take the advice of the professionals.

Very good luck whichever you decide on!

[cathie]

Rituximab for 5+ years. It’s worked well but am concerned now about how it seems to wipe out the effectiveness of the covid vaccine. I’d be interested to know whether the alternatives have the same effect.

Hope you find something

C

[trenarren]

Hi, I've been on Rituximab for 3.5 years now, it was a slow start but I feel great now! I also got covid last June and that wasn't too bad either. I just hope this continues, as all the meds I've been on over the last 10 years didn't seem to make any real difference at all. But.... we are all so different!!

[KaysDad]

I will start by saying that different biologics seem to work differently with different people being very effective with some but ineffective for others. Having said that, I have been on Rituximab for 16 years, starting on a trial. It has been a lifesaver for me. After the first 3 infusions of the trial (each one as a pair 2 weeks apart) I was in remission for nearly 7 years. Now it lasts for 18 months to 2 years. If we forget my feet, I feel fully clear of symptoms - except maybe fatigue, but then again, that might just be advancing years!!😀

[Bella59]

Hi i have been taking filgotinib for nearly five months now and i feel it is helping me also take Methotrexate 15mg pen.I had two infusions of rituximab which did nothing.Have tried several meds over the years.Am afraid it is try and see how it works out for you.We are all different.I hope you find a med that will help you.

[Mmrr]

I've just seen your post.I started Filgotinib around 7 weeks ago. I have seronegative RA, my big problems being tenosynovitis and enthesitis.

It has definitely helped reduce the heat and pain in my soft tissues, maybe not as much as I would have wanted, but a definite improvement with no side effects. Taking just one tablet in the morning, it is easy to take, no transportation issues if you are going away overnight.

[Pastels]

I’ve been taking Filgotinib for about 18 months now just 200mg a day. No side effects and a huge reduction in joint pain also reduction in soft tissue issues. Best of luck with your change in drugs.

[Blodynhaul]

Hi tamnwill, I've also been on Filgotinib (FIL) for a year now. My RA was completely out of control for the year up to starting it, living in agony and totally debilitated. I call it a 'miracle' drug as - thank goodness as a last resort - it is doing a great job & inflammation, pain/agony all reduced hugely & can be independent again. But - I have developed some nasty and concerning chronic symptoms that have developed since starting FIL, though not sure they are all due to the FIL. In the process of trying to get to the bottom of things! Good Luck!

[emmajj1971]

I have been on rituximab for a number of years, but I was taken off during covid due to the risks ice been back on it now for almost 2 years and unfortunately is not working as it was before but ot does take about 1.5 years to see the benefits of it

[tamnwill]

thank you all for your replies. 😗😗😗