Hi everyone I have a few questions about the above for RA use.
Specifically wanting to know if anyone has lung nodules and if they have increased whilst on Benepali?
Has anyone had a lung collapse whilst on Benepali?
Has anyone on here had problems whilst being on the above Benepali?
How often (if you are on Benepali) have you had/should you have your bloods done, and or X-rays or CT scans whilst on it (or even after it if you have been taken off of it).
Thank you so much.
I can only give you my experience as I've not had a CT scan as it hasn't been necessary. I have my bloods taken every 6 months . My lungs have never collapsed. I did have an X-ray of my chest prior to starting it. I've been on it for 13 months and it's changed my life for the better. I've not had side effects,nor been unwell . Brilliant
Thanks for you reply. I presume you haven't got RA lung nodules? Did they suggest the Xray before you went on it? thanks again
Assume right. As I came into contact with TB as a child I did have a a chest x-ray plus additional blood tests that were sent off somewhere. All good and the hospital were satisfied all was well to go ahead. Beni has not caused me harm.
I have lung nodules but no-one can distinguish whether they are from current drugs, RA, a misspent youth, smoking or childhood TB. (I am on Enbrel).
I had CT scans 18 months apart to see if they were doing anything, and they weren’t so have not asked for further follow up.
I was found to have a single lung nodule, that was picked up on a PET scan when being investigated for vasculitis after developing GCA, this was before my diagnosis of ankylosing spondylitis.
I’ve been on benepali 6yrs, and the nodule hasn’t changed. I did start getting shortness of breath and had a HRCT which initially came back with pulmonary fibrosis. After 7 months they said after sending my scans to the Brompton, that the scarring was due to aspirating acid. The scan also detected Atelectasis, which is pockets of collapsed lung. However it’s been put down to my fused ribs, and the fact I have no chest expansion, and not due to my meds. My rheumatologist initially stopped my MTX when he seen the CT report. However the respiratory specialist said that that view was cared on weak research, and more recent stronger research shows MTX actually plays a role in delaying onset of pulmonary fibrosis, so she insisted I restart. I continue on both and am monitored. I haven’t had a repeat CT as my breathing hasn’t deteriorated, but I get annual lung function tests to monitor things.
Lung problems seem to be common in Rheumatoid Disease whatever medication you are on and it seems now to be suggested that it's part of the Rheumatoid Disease rather than the treatment.
It is something to bear in mind that Rheumatoid Disease is a whole body auto-immune disease, it's not just attacking the joints - which is why I insist on calling it Rheumatoid Disease and not Rheumatoid Arthritis (in my pedantic way).
I get fed up when I say I've got R Arthritis and the reply is at our age we all get arthritis. Big difference.🤷
Oh me too and I insist on correcting them, spelling out it’s an autoimmune disease. As you say, Big difference, big, huge.
Hi Rockky
No lung nodules here but have been on Etanercept since 2015/16 Enbrel then switched to Benepali.
I have my blood tests every 12 weeks since Covid it was every 8 weeks prior to the Pandemic.
I still have relatively frequent flare ups usually due an unrelated virus or too many late nights or stress factors from every day life. Eg if I have a head cold my left foot is agony or my hands swell up.
In general Benepali has given me no trouble and no side effects. My chest wasn’t scanned before I started just had to answer questions re exposure to TB etc.
Good luck , hope you get the reassurance you need from your medical team.
Mx
thank you
Hiya, I was on Benapali for four years with no side effects BUT it did stop working about nine months ago. Had regular chest X rays ( when lockdowns permitted) with no problems. Had bloods taken every three months.
My rheumatologist changed my biologics to Amgevita ( think it was formerly Humira) and have had numerous chest infections since being on it so stopped last December. Think everyone is just different but my lungs feel rubbish now after Amgevita. Hope you get on okay with it! xx
thanks for the reply, can I ask roughly how often your chest x rays were please and did you get given one before starting on Benepali? thanks a lot
Hi I have lung nodules. Found on screening for new Biologic when changing from Humira to Rituximab. I was on Etanercept prior to Humira. They initially found 1 nodule & I started 3 years of regular High resolution CT’s monitoring. Each CT was different. Often new nodules appeared often bigger than vanished on next scan. I also had ground glass too which was when they stopped Rituximab. I’m now on Abatacept. On my final CT they decided they were caused by RA or meds & not acting like cancer. However on last scan they found Bronchiectasis possibly caused by RA or a prolonged Pneumonia a few months previously. As Enbrel & Humira are both anti TNF’s I thought it may be of some help x
thanks for the reply, can I ask did you get scanned before starting on Etanercept and how often were you scanned whilst on it please? also how often blood tested too? thanks a lot and make sure they keep monitoring your nodules too.
I have just come off Benepali after 9 months as just not decreased inflammation levels for me and am starting JAK tablets.I had no side effects at all on these injections.I was concerned as pre blood test showed I had dormant tb which was a complete surprise,as not aware I had had tb in my youth,but rheumy said we would take the risk.I had no lung problems at all during the 9 months.had bloods after 6 months and they were o.k.no x rays or ct scans.I say again that for me no adverse effects at all.just worried now about starting JAK treatment but very reassuring replies on this forum fro people taking it.must say this forum is so good as you feel there are people who understand and support.only joined a week ago but really changed my outlook!good luck.let me know how you get on.
Hi , I’m on Benapali not sure what’s going on , had lots of UTI , now when I inject my body is on fire , my boobs get hot and painful, my tongue and throat starts burning just feel I’ll .
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