I’ve tried 3 DMARDs and am just on 400 mg hydroxy now. Allergic to sulfasalazine and had stomach issues with MTX and leflunimide. In fact, after about 8 weeks on nothing but the hydroxy, I STILL have stomach problems.
My rheumy will likely try one of the biologics next. Does anyone have any “stories” I should hear—positive or negative? Of course I’m scared out of my mind after researching their possible side effects. Is there one that’s easier on the stomach, maybe or doesn’t cause cancer (lol)?
Thank you!
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Windonmyface
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You'll find many journeys on here, all absolutely unique - as are we. I have had a number of different ones - if you read my threads, you'll see. Cimzia was great for me for some time. I'm currently on Tocilizumab, which is really good too. Your rheumatologist will give you good advice, I'm sure.
It seems from recent research that your biggest cancer risk (apart from the usual suspects of smoking, rubbish diet, etc etc) is uncontrolled RA inflammation. So that’s the first thing to reflect on.
The next is to recognise relative versus absolute risks, and headlines usually only give relative risks which always sound worse. So say the risk of anyone getting lymphoma is 1% (it’s probably less) and taking biologics increases your risk by 25%. Sounds awful! Massive increase in risk!!
But what that actually means is the risk for everyone is that 1 person in 100 will get lymphoma, and for people on biologics that increases to 1.25 people in 100 (or 1 person in 80) Not so scary?
But there is very little hard fact about exactly what any increased risk might be, and for you it could be nothing!
Most biologics are injected, so bypass the stomach. And that should help you.
I moved onto them a few years back, and they have been great. So improved quality of life now outweighs any future risks for me!
I found biologics so much 'cleaner' (far fewer side effects) to take than hydroxychloroquine, sulphasalazine or methotrexate which all had awful side effects. Unfortunately they didn't work so well for me and I am now on a JAK inhibitor
Toficitinib gives me a good bit of relief from the enthesitis and tenosynovitis I experienced as part of RA. I'm much better on them than off them. Other than raised cholesterol I have no side effects.
Tried them all like you. Felt poisoned. Yuk. Tried a biologic which didn’t work but no particular side effects. Now on a JAK. Apart from the two text book chest infections on first year I have absolutely no side effects. They have to publish them but chances of them affecting you is low. Worst that can happen? You stop taking them. Don’t be afraid. Good luck.
I've had three biologics so far (Simponi, Baricitinib and now Kevzara) since 2012 and I haven't had any side effects from any of them and they've worked very well. So I am a HUGE fan of biologics!!
However, with time they tend to lose efficacy (at least in my case) so you might have to try more than one until you find one that works for you. I've only had really good experiences, especially with Simponi, which started working within days (!!) and got rid of most of my symptoms. I wish you much success!
Hello Windonmyface,I started taking Amgevita (Adalimumab) just over a year ago. It’s been a complete game changer for me. No pain at all and no side effects.
I had similar reservations about taking a biologic to you but now wish I’d taken them sooner!
HelixHelix explains it very well re that uncontrolled inflammation is an increased risk factor for cancer. She has also explained the relative versus absolute risk well. The percentages can sound scary till you dig deeper, and see that it actually still reflects a small percentage. I have ankylosing spondylitis and NASS havd found that biologics don’t increase the risk of cancer. Re infections, before biologics I was always picking up infections, as I worked on the frontline nhs. My body was too busy fighting the inflammation to deal with infections as well. However once inflammation was under control from the biologic, my body was able to fight infections easier. In the 5yr of taking biologics I’ve had 2 infections. They only target one part of your immune system, and in most cases turn the dial down to most peoples normal. I’ve had no side effects from mine. You can stop them immediately if they don’t agree with you, no need to wean off
Hi, I don't know where you did your research on the biologics. I would highly recommend the NRAS website. There you'll probably find the answers to your question. I knew when I started a biologic 10 years ago that there may be an increased cancer risk, but I also knew what damage RA would do to my body if I didn't take them. It was a no brainer. Years of good quality life against a small increase in risk, I like the odds! I hope you find a solution.
I am six weeks into Cimzia and fine so far. MTX and hydroxychloroquine were utterly awful in my case, so I am hoping for better results with the biologic.
I've been on the biologic adalimumab for 2.5 years now and it's been really good for me. The only side effect has been feeling knackered the next day but that's lessened over time. Like a lot of others have said, the experience has been much better than with DMARDs.
My 10 year journey echoes many of the others here, like you the only DMARD I was able to tolerate was Hydroxychloroquine and I was never sure it was actually helping. Biologics were the start of a new life, currently taking Cymzia and just had a scan of the hands and feet showing the RA damage is all old, so Cymzia is controlling it. You may have to try different biologics but there are now so many to choose from, I'm sure your consultant will sort it for you.
I’ve had fewer problems on biologic drugs than on the DMARDS I was given before them. Sulfasalazine put me in hospital for ten days with sepsis and methotrexate caused permanent lung scarring! All drugs can have potential side effects and the pharmaceutical companies have to list them, even if they are very unlikely to occur.
So, try not to worry and look forward to getting your RA under control on a biologic as so many of us have done before you.
Adalimumab (as Imraldi) pen injections every two weeks has transformed my joints. I can't believe that I can now make a fist - something I haven't done for years! I still take azathioprine, which like all the DMARDS I took previously gives me nausea and rapid gut transit times and I've just been advised that I can now reduce the dose of that! I do have other problems but they are due to osteoarthritis....
Thanks to all who posted replies to my query. They were all very helpful and reassuring. I had a telemed meeting with my rheumy today and she’s going to set me up with Humira infusions. Now to wrestle with my insurance company, as we often have to do here in the States.
Hi Windonmyface,
It's natural to feel nervous about trying a new medication especially if you have had side effects in the past! And you should discuss these with your rheumatology team to help alleviate some of the fears you have, as you can find out what safeguards will be in place.
As many of the community members have shared (thank you all!), a lot of people respond very well to biologics and can find them a complete "game changer".
Check out the NRAS website for more information and personal stories around biologic use in RA management: nras.org.uk/resource/biolog...
You can also contact our helpline at helpline@nras.org.uk or call us Mon-Fri 9.30am till 4.30pm on 0800 298 2650 for more information and support.
Just go for it. I tried 4 before the 5th one worked. No negative side effects, all positive. My son used to have to help me get up from the sofa - I went paddleboarding around the salcombe estuary last summer!
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Drinking on htdroxy
1St dose of hydroxy taken.
Sulphasalazine
Opinions please
