Hi thank you for letting me join your group and hello everyone. I’m looking for help with a decision on my medication. I had been on methotrexate for a number of years but unfortunately due to infections, I ended up more off it than on it, often having to make the decision myself on whether to take it or not. I was previously on sulfasazaline but had to come off that due to constant UTI’s.
I hadn’t seen a Rheumatologist for 3 years and I now have permanent damage to toes and wrist. I finally was referred to a rheumatologist who was sympathetic on my case and agreed I should have had better care, but he wants to put me on biologics and it scares me. My head is now scrambled with it all and I have been in limbo without medication for over 4 months apart from 2 steroid injections.
I am having a flare up at moment and pain is so severe in right ankle and wrist. I know I need to make a decision what to take but I’m finding it hard as I have just recovered from stomach ulcers probably because of methotrexate. I can’t stop tears and just need to know if anyone has moved onto biologics and how they are finding being on them and is the care there when you are taking them. Thanks
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Craft123
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Hi, Like you I was on methotrexate for years and had numerous infections including sepsis and i made the decision myself to stop it and that was about 5/6 years ago. Over the years I have been on many different RA drugs even trials but unfortunately most of them i ended up with side effects so stopped them. About 5/6 years ago they started me on Enbrel once a week and from them on that is the only RA drug i take, touchwood i have had no infections. I don’t think my rheumatologist likes it that i am on just the 1 drug as every appointment i have they always ask me if i would like to go back on methotrexate or something else and i always refuse. Why would i want to go back to always feeling ill. X
thank you that’s reassuring as like you methotrexate caused so many infections I was more off it than on. I’m so pleased you have found Enbrel works for you, fingers crossed I’m back to some type of normal soon xx
Methotrexate doesn't cause infection it lowers your immune systems which in turn stops the immune system fighting other health issues your body may develop, I sympathise with people who can't tolerate Methotrexate because it's by far the best medication and most used to fight rheumatoid arthritis.
welcome to the group Craft, I’m glad you’ve found us. It’s a supportive group with a wealth of experience so I hope you find it useful.
Lots of us here are on biologics and doing very well, I know they sound scary but uncontrolled RA is even more scary as it can affect not only your joints but your organs. One thing to bear in mind is that people often come to the group when they need answers to a problem or they are struggling, so don’t think it’s all doom and gloom here as there are many more people doing well on their drugs who are off getting on with their lives with no need to post here. Once you know which biologic you are going onto then you can use the search box and filter for NRAS and all the previous posts will come up about it. NRAS also have publications on all the med options which you can download.
I’ve been on a biologic just over five years and it has been a big success for me. Like you I was scared but we would never take any drug if we let all the possible side effects put us off. Even paracetamol 😊 just to add I’ve had no infections etc since being on it. 🤞🏻 you feel able to give it a go soon.
Welcome to the group and I understand your anxiety. I can reassure you that I had doubts a year ago as I moved on to a biological type of treatment. I was scared stiff about it but do you know what I was and am absolutely fine with it. In fact my RA has improved vastly and I'm grateful for it. Good luck
I was horrendous on many of the drugs as now so sensitive to medication I eventually got put on Jak baritcitnib and been the best thing pop a pill and get on with my day. Lots of other issues but for the Ra bloods it’s been a good one for me.
I delayed moving on to biologics for over a year because I was worried. In hindsight that was a very stupid decision! I had an extra year of pain that could have been avoided, Everyone is of course different, but they worked very well for me for a number of years,
Just remember nothing is forever. I tried 5 drugs; including a biologic, before landing on my magic JAK. If the next doesn’t suit or work there are others. I’d grab the chance to go on a biologic. What’s the worse that can happen? (This is my motto for life btw). We are here for you.
I am not taking a biologic as mxt has been fine for me over 20 years but I agree with Kitty when she says that most people come on here when they have problems. It's a bit like news reporting. If a plane crashes it makes headline news and rightly so but you never see a headline saying tens of thousands of planes, around the world, have taken off and landed safely. I know staring new medication is scary but you have to try it to know how it is for you. Try to think positively and that you are one step away from a much better, painfree life. I wish you all the best.
started on methotrexate, great response shame about the side effects(depression is also a side effect and when your RA is under better control your mood will lift❤️). Then onto biologics, slowly working my way through the options due to various reactions (rituximab took a month out of my working life but the best 11+ months treatment free response) then various others sulphasalazine, tosalizamab not as good but no major side effects (just sub optimal response). Now on abatacept no major side effects so over two years on and happy with the response. I have had RA for approx 25 years I have changes to my hands, still work and garden. I put this down to the biologics for RA I have received and I am so sad to hear about your awful care, I have been a total pain in the arse patient (I am sure that is what they call me). But I do call them to account as it is my life that is being impacted. I do join in all the research too to help those who come after us. However the rheumatologists do look at me as the how things can work out when I stride in and say all is well see you again in 6months. So fingers crossed you too will have a good response with biologics, always remember it is your life and health and stand up for yourself, ask lots of questions, if you are concerned about anything, keep a notebook about these and take it to your appointments. Also physio, podiatrist and the occupational health people have great ideas and support for your many niggles and pain reach out to them too. Good luck.
Because I have a problem with my liver methotrexate was never an option for me. It took 5 biologics before they found the right one for me - Tocilizumab. The others didn't work. The drug advice sheet is scary but I would add a little note with it that says - this drug may make you feel better than you have done for 8 years and you may find that you can forget about your rheumatoid arthritis and get on with enjoying life!
Hi. I know how scary it can be and a massive head shift. When I was diagnosed at age 29 I had rarely taken paracetamol & was given methotrexate. It was a massive shock for me & took a lot for me emotionally to take a tablet. I went through loads before I started on a biological drug & that worked for me for several years. Now at 52 I’m on a JAK tablet in a blink of an eye. Because I trust my rheumatologist team & I do tend to not read all the blurb or I wouldn’t sleep! How things change along our journeys. Good luck & I hope you have many good years on biological drugs as they were a game changer for me.
Keep in mind that the traditional dmards you try first (methotrexate, etc.) are more broad coverage drugs (think throwing a blanket over a pocket lighter to extinguish it). Biologics are far more targeted medications (think taking the flint out of the lighter) and because of this they are "cleaner" with far fewer side effects, as they are only targeting specific enzymes or proteins in the chain of immunity. For this reason, biologics are generally superior drugs, but for obvious reasons of cost the "broad spectrum" dmards are used first. Rather than fearing biologics, I consider myself fortunate that I was placed on a biologic as the side effects are non existent and it is proving itself very effective, after experiencing life altering and debilitating side effects from methotrexate and sulfasalazine.Yes, as google will tell you, there can be rare severe side effects to biologics, but in my opinion the benefits far outweigh the risks.
Good luck with your decisions, and I hope you approach it with a hopeful attitude.
I am now on Rinvoq which is a Janus Kinase inhibitor (each biologic targets a slightly different receptor in the immunity cascade). I was previously on Tumour Necrosis Factor inhibitors, but in my case they weren't particularly effective. Unfortunately the science is not at the point yet where we can ascertain which factor needs to be inhibited in each individual case, science can only tell us which biologics seem to be more or less effective in their studies, so unfortunately it's a bit trial and error. New hope is on the horizon, as research on effective treatments based on the patient's genetic (DNA) makeup are starting to emerge, and cancer treatment is at the forefront. Interestingly, many sources are starting to point to autoimmune involvement in the development of some cancers.
I am thinking that one day doctors will start people on biologics rather than Dmards. I believe the Dmards suppress the whole immune system while the biologics pin point one specific part. The Dmards are cheap so they start with those. I say try the more sophisticated biologic.
Biologics are great, when you find the one that suits you, it’s life changing.
They’re easy to administer, self injecting with a pen, usually just once a week. The side effects, if any, are less problematic, and they halt the destruction of your joints, reduce or eliminate the pain. Essentially, you gain quality of life.
I understand how scary it is. I was sceptical and afraid, but was in a bad place with RA and other meds had failed. I haven’t looked back… I’m making the most of life now I have one that is so much better.
Have a look at the treatments pages on the NRAS website for more information about them, (rather than Googling them): nras.org.uk/resource/drugs-...
There are also lots of previous posts on here if you use the search box top right as many people,like you, have worries about starting on biological treatments.
Personally it has transformed my disease and made it manageable and I hope that it will continue to do so. I had lots of problems with my gut, including ulceration, on methotrexate and had to stop it. I take azathioprine instead but have been able to reduce the dose of that since starting on adalumimab (I'm on a biosimilar called Imraldi).
This is a very helpful and supportive group, so welcome and please feel free to ask questions about anything, or just have a moan if you need to! Remember that most people post when they have problems and most people are trundling along without and see no need to post.
Hello Craft, I can understand that you are confused and a bit scared. There are now many different biologic and biosimilar drugs. Something that has always helped me is learning as much as I could about living with RA in general and specifically drugs. I dismissed Dr Google and concentrated on good and fact based reliable information which I found mainly on the NRAS website and also Arthritis UK and Versus Arthritis. NRAS have an extensive library on all aspects of living with RA and also a great helper called Smile-RA, which is divided into small but very useful topics with videos and explanations.
Biologics have been the wonder drug for me and thousands of others who live with RA.
So sorry to hear of your experience, I am sure this group would have encouraged you to get help sooner than 3 years.
I have had RA for over 30 years and the journey is not easy but I can say with confidence that moving to Biologics has saved me from suffering severe joint damage and being house bound like one of my parents. I have taken 2 biologics and I am now on a JAK inhibitor.
To be fair, you can get the occasional side effect but none I have had are as catastrophic as RA is. Any treatment can stop working after some years, or may not, as we are all different but with good monitoring and speaking up you should be fine. Controlling the RA is THE most important thing, things like mobility, reduced pain and quality of life come from that.
Be vocal if it is not right but do not be afraid of newer drugs, they work.
I wish you better health and all the luck you need
Sorry to read that you are struggling. Many of us have been in the same position , you're not alone.
Like you, I was left in limbo, while they worked out very slowly what to do with me, after initially being diagnosed with "mild" RA, it was only after seeing a brilliant, young, Consultant who organised more tests/X-Rays that I was diagnosed with Sero-Positive erosive RA, and that the agonising pain I had been experiencing and which was ignored, was actually both of my wrists fusing , plus extensive damage to hands and feet. Anyway, they moved me on to Enbrel..after trying the usuals before, it worked well but wasn't doing enough, so I have been on Rituxumab for about 7 years now.
I have been wary of any new medication I ever been put on, it's human nature, but we need them and they're there to help us, you've been given some good advice and can reach out for others experiences of them..but we are all unique. Trouble is it can just take a while to find one we can either tolerate and works got us. But if you've been offered Biologics..grab them in my opinion.
I hope you get on a medication that helps and works soon. Good Luck
Hi Craft 123 Methotrexate didn't work for me, and then I had a high liver blood test so was taken off of it (they had also added in Leflunamide). I had two biologics but they didn't work either. Baricitinib (JAK inhibitor) has worked the best so far (had fungal skin infections) and am off that at the mo as got to have some gastro investigations - so don't know if I will go back on that or something else. I too get very nervous starting a new medication but cannot manage without them. I feel more confident now to speak up for myself and question - it does help to have a consultant now that I feel I can talk to. I think this group has really helped me because you realise you are not alone and there are lots of people going through the same/similar. Don't think about the side effects - you may not even get them and if you do, cross that bridge then. Good luck and let us know how you get on. Sending hugs xx
Welcome to this brilliant group! Craft123 I am on benpalli and it gives me my life back and can still go to work. I jumped at the chance of taking a biological drug. I was also on methotrexate for 5 years, but then got a phobia about it and had to come off it. One didn't work humeria as it wasn't strong enough. This group listens and they all know so much. Hope you take the new drug. Take care.
Hi Craft, I’m new to this group too and also to RA! I was diagnosed in Nov 21 and am due to start biologics in the coming week! My journey so far has been hard as I was pretty fit and active and have become virtually housebound. But reading through the comments here and elsewhere in this forum has really helped (and my word you could lose yourself for days on here!). One thing I’d say (and it echoes another comment about the difference between dmards causing infections and lowering the immune system) is that I had a run of uti’s and my gp suggested it was a menopausal problem rather than anything to do with the RA drugs. I started on estrogen therapy and it’s stopped all that in its tracks! I know you may not be in that category at all but it’s worth consideration. Don’t suffer, shout up. Maybe I’m lucky and my gp practice is better than some but once it’s there you have to live with it. There are lots of people out there finding ways to help us do that so do keep asking for help! I hope you get sorted very soon! 😊
Hi, I injected methotrexate for many years and tried many other RA drugs. I now take a Jak inhibitor Filgotinib and what an amazing difference it has made to my life! Only one tablet a day and only minor side effects at the start. Wishing you the very best on your search….
I have been on biologics for 9 years now first of all Toczilimab which l had for seven years as a monthly infusion and now l am having Rituximab infusions six monthly l also have friends on tablet form of biologic who are very happy on them ot is also a way of seeing the staff regularly
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