Anti-TNF experiences please

[Ibizacalling]

Hello, I’ve had AS for approx 12 years, only diagnosed 2 years ago. I’m under a brilliant rheumatologist and have tried NSAIDs with no effect. I won’t go into the finer details but he wants me to consider biological therapy next. I always swore I’d never take it. The potential for leaving yourself more open to chest infections etc I can handle, but I’m very nervous about the potentially increased cancer risk. The consultant has reassured me on that (that it’s not the case) but I feel like it’ll be something that hangs over me. I wouldn’t be considering it if the potential benefits didn’t seem worthwhile.

Can anyone who is on anti tnf meds offer any advice and experience. It would be much appreciated. Positive or negative. TIA

Hi, I have been on etanercept since 2009 for RA. In all this time I have only had a couple of chest infections that weren't too bad, and nothing worse. I do sometimes wonder about the cancer thing, but like yours, my rheumatologist seems to poo poo that research anyway. The drug has made such a difference to my quality of life, and I think even if I did get cancer I wouldn't ever know if the anti-TNF was to blame or not.

I was given 3 infusions of infliximab as a surgery sparing intervention back in 2009 to control a severe flare of UC. It was nothing short of miraculous and did everything steroids couldn't do for me.

I was given each infusion in hospital as a day case, 6 weeks apart. I was then bridged onto immunosuppressants which I've been on since. I think all drugs Come with risks- certainly with bios/immune therapy you are regularly tested for anomalies in your bloods etc, im every 3 months.

You also will probably be at a stage where your quality of life is being considerably affected. On balance, for me- biologics and Aza gave me my life back- I was a hermit and very ill prior to starting treatment. If it helps, Review the data for yourself- proper journals- and make an informed Decision. I have absolutely no regrets. Best of luck with your decision. Xx

Hi OP.
Have you joined the Ankylosis Spondylitis Support Group UK on Facebook?
You’ll get lots of support and advice on there x

I tried Cosentyx which gave me the most horrific mouth ulcers meaning I was unable to even drink water through a straw.

I’m now on Benepali Etenercept weekly and have been for 2 years. You may hear about random side effects of all AntiTNF drugs eg itchy skin, sore eyes but all drugs may have a side effect.

Under current UK regulations, as patients we are only allowed to try 3 different AntiTNFs...so if they don’t work, you won’t be referred for any more.

You will have blood tests every 3 months for a white cell count to check liver function and as far as I know this in some way is indicative of a link to any possible cancers too.

I’m glad you got a diagnosis of AS so soon. Mine took 16 years x

Sorry- ignore my last sentence, I misread and thought you had symptoms for 2 🤦🏻‍♀️
NASS are doing a big push atm for a quicker diagnosis.

I have been on Entyvio (vedolizimab) for ulcerative colitis for over two years. It took a couple of months, but my UC is now in remission. A total life changer.

I don't notice much in the way of side effects, although I did get a bad infection in a surgical wound in December.

Indicative of a link to cancer? What does that mean please

@Loushome what does indicative of a link to cancer mean please?

As far as I’m aware I think they check the blood for white and red cell count which if too high, may indicate for sign of infection of some sort. It wouldn’t necessarily mean cancer, it can be any infection.

I should tell you that my rheumatologist spent 3 years telling me I should try a biologic. My mobility was so poor in the end I had no choice.

When I get a cold now, occasionally it does lead to a chest infection and when I caught coronavirus back in Jan 2020, (before we really knew what it was) I wasn’t hospitalised. I was given asthma meds and steroids, 2 different types of antibiotics, slept upright in bed and it lasted 4 weeks. The biologic does make you more susceptible to viruses and infections to a degree and you do need to consider this.

You may find these helpful.

nass.co.uk/wp-content/uploads/2019/11/Biologic-therapy-for-axial-SpA-AS.pdf

creakyjoints.org/treatment/tnf-inhibitor-biologics-do-not-increase-cancer-risk-in-survivors/

Thank you SO much to everyone who has replied. I truly appreciate you taking the time to give me the benefit of your experiences.

@Loushome, yes I joined the FB group, it's been very helpful to read through all the info there. I think it will be a great source of support. Thanks for the suggestion. I also read the two links you sent - hugely helpful! x

I'm feeling quite a bit calmer about it and have written a list of questions for my consultant when I see him next. I guess one way to look at the periodic blood tests is that you're monitored so much more closely than as if you're just in the general population, so anything nasty is caught very early. I'm putting a positive spin on this!

When reading through support sites etc I sometimes wonder if I'm severe enough to warrant anti-tnf - some poor folks appear to have it so much more severely than me. I can walk, function properly for the most part... but then I think about the excruciating pain I have trying to sleep, the lack of mobility in my entire spine, the hunch I'm starting to get, the pain that sears up my neck to the base of my skull, and now my intermittent jaw issue meaning some days it's hard to open my mouth wide enough to fit the bacon butty in!

"Severity" looks different on different people. As autoimmune sufferers I think we get very used to, as my Rheumy said, "putting up and shutting up" - chronic pain just becomes the dull underscore to our daily lives and if there's a med I should try to give me a more age-relevant life back and allow me to run around the garden with my little one without pain and stiffness (and non-threatening side effects), then I'm becoming convinced I should try it.

It's also about trying to halt the disease. In the couple of years since diagnosis it's now intermittently in my knee, jaw and most severely in my neck. How will that all look in another couple of years?

Thank you to everyone who took the time to reply. I'm here to discuss any aspects of treatment or AS if anyone wishes xx

My rheumatologist flatly refuses to consider biological drugs because U had breast cancer. He won't even discuss it, says it's out of the question for anyone with a historyof cancer. I'm interested that some rheumatologist dismiss the link.

I also said I wouldn’t take it. But the pain was getting me down. I ended up agreeing to trial it. It’s been amazing for me. A total game changer.

I’m convinced that having high levels of inflammation is storing up loads of future health issues, eg dementia (caveat I’m not a doctor) so it’s not just the immediate problems that you have to contend with, like pain.

Don’t think I’ve been particularly ill more frequently - I had a run of infections a few years ago, but nothing that has ever made me consider stopping the meds.

Word of warning - I had horrible nausea when starting them for about 6 weeks, which then magically disappeared over night.

Thanks for your perspective @Calmingvibrations It's good to hear positive experiences - nausea aside! I've had to start thinking of it from the point of view of helping to halt the disease too i.e. it's not just about stopping the pain levels. I'm sure it's in my right now which sporadically swells up, clicks when I walk up stairs and is painful. Who knows where it'll progress too next. I just have to be pragmatic about it and try to override my natural health anxious mind!

I have AS and IBD. I've been on humira for 5 years. The cancer link did used to freak me out but actually it is very specific cancers and not particularly relevant or likely. I've never got any infections.
Humira did work brilliantly for both AS and IBD at the start and I would recommend trying it.
However have you tried anything else because there are things before biologics. They don't usually offer you biologics are a first thing ? Sulfasalazine for example was an absolute wonder drug for me - best thing I've ever taken for stopping symptoms. I was very allergic to it and had to stop though (I have a condition which causes severe reactions to most things) but it worked way better than either biologic I've taken for AS!