just sharing my misery . well had rtx infusions in July and August . Initially great swelling gone felt active and alive . I then got a boil that took 2 lots of antibiotics. I’ve had a gradual decline in mobility and stiffness over the last 2 weeks . My feet the last 2 days very stiff and sore as are my hands .pheripheral neuropathy really having a field day. I first had these extreme symptoms with etanercept and had to stop. These drugs are both tnfs so looks like my body does not like these. Need to make appointment with rheumatologist.
P*****d off: just sharing my misery . well had rtx... - NRAS
P*****d off
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I’m sorry to burst your bubble but don’t despair…. that’s RA for you…& a couple of months is not long enough to abandon Rtx. You could have been incubating a boiled anyway!
I might be a slow learner, but it took me 16 years to find my Go To med & I still wonder if it will fail…you just have to dig deep. …& don’t expect a miracle from every new drug.
Keep going …it’s very early days yet…if you already had neuropathy…..you know how up & down it can be…so try to give it another few months.
It can take a good 6 months ie..after your next two infusions for Rtx to kick in,,,,give it at least that….think about it…,it could mean plain sailing for years to come!
sending you strength vibes, it’s just so awful and you feel things will never get better…but they will. There are so many options. But yes, new ones take time to work and it’s so frustrating and difficult to wait as hope is fading but try to hang on in there. It’s so tough. Things will get better.
Rituximab is not an antiTNF, it’s a B cell depleter so a completely different mode of action to entenercept.
Don’t despair, Rituximab can take up to 12 weeks to work, especially after the first round. Don’t forget you’re given intravenous steroids with it so that is probably what initially improved your symptoms.
Hopefully it will kick in soon.
Aw that’s disappointing for you J1707, especially when you have had such a good initial reaction. Will be keeping my fingers crossed that it is a temporary flare up in symptoms and that things will settle again for you - you haven’t recently had either flu or COVID vaccine have you - both of these seem to kick start my immune system and send things downwards for a few weeks. 🤗
I'm so sorry to hear this J1707, hopefully you can be seen soon.
So sorry to hear your news. Disappointing though it is maybe a new drug is just around the corner. 🌈take care.
It can take a while for the RTX to be fully effective so don't give up hope yet. The infection and antibiotics may have caused a bit of a flare. Hope you will feel better soon.
After your next pair of infusions you should notice the cumulative effect of RTX working and start to feel a considerable further improvement, as is very common.
Hi I started on etanercept in February this year. Shortly afterwards was diagnosed with glaucoma in my left eye. Just wondering if there's any connection to the new drug maybe causing the pressure and blurred vision . No one in my family has had glaucoma in the past. Has anyone had a similar experience ?