I’m currently taking 20ml metratrexate but going up to 25 ml in the coming weeks! And also possibly starting a biologic called Himara)sorry for spelling 🤦🏽♀️anyway firstly is anyone currently on this med?and how you finding it? I’m also very concerned around what I’m reading that biologics can cause cancer!!!and lymphoma I’m so frightened!!I don’t know if I’m reading old articles also say RA causes lymphoma I feel full of anxiety and constant worry and don’t know what meds to have as I feel like they will cause more problems
please reply 🥲
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Mybirthday1975
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I’ve been on MTX and a biologic for 7yrs, with no issues whatsoever. More recent studies, show there is no increase risk of cancer, but I should mention that uncontrolled inflammation increases the risk of cancer.
Most people cope well on biologics, and they can be a life changer. They can increase your risk of getting infections. Personally I get fewer on biologics, despite haven worked on a busy nhs ward with lots of infections. When you have lots of inflammation, your bodies working hard to control that, that it sometimes misses infection sneaking in. Once the meds control the inflammation, then the body can do its job better. Also humira only targets one cytokine, which is tnf, it doesn’t reduce the whole immune system, and in most people just turns the dial down, to the level of healthy people. The vast majority take biologics with no ill effects. If you don’t get on with them, you can stop them, there is no need to taper. These drugs are extremely expensive, if your rheumatologist didn’t feel you needed them, he wouldn’t offer them, as they cost approx £10,000 per patient per year. You will need to have bloods and chest X-ray prior to starting, then your rheumatologist will apply for funding, so it’s not a quick process. It’s usually a couple of month from initial testing, to a nurse training you to inject. Hopefully this all reassured you somewhat. 🤗
Morning!aww thank you so much for your reply you have really reassured me I feel much better now you seem very knowledgeable!!can I ask how much metratrexate you have?I have rheumatoid arthritis and have tried the usual treatments such as sulfazalizine and Hydroxyquine with no success!my rheumatologist said I have very active disease and my inflammation markers are always high.I have stereo positive RA and was diagnosed around two years ago the disease has already give me very poor movement in both elbows so the rheumatologist referred me the an orthopaedic surgeon and he was in agreement with the rheumatologist that I need biologics and from the MRI scan reports.it has made sense what you said about infections sneaking in I’m always pick things up I’ve have covid about 6/7 times🤦🏽♀️among other things probably doesn’t help workin with 4/5year olds in school 😂xx
I’m on 25mg of MTX, I also am on steroids for life, in addition to the biologics. I actually have aggressive ankylosing spondylitis. Once your on biologics you will be eligible for the Covid boosters, with the Spring ones starting next week. Your rheumatologist may even suggest getting it prior to starting biologics. Glad you feel a bit more reassured.
Thanks for replying and I’m on 20 ml of metratrexate but going up to 25ml in the coming weeks!do the side affects get better I don’t have lots but a bit of headache and tiredness after the injection!and I’m already entitled to covid boosters I’ve had all my vaccines and I’m due one now I must say they do help and when I’ve had covid they lessen the affects.🙂
That was very informative thank you,I have 12.5mtx and benapali I often wonder what the side effects are,but to be honest my ra has improved significantly so really getting the balance is the clever part.
I agree with you about infection. Everybody was sick around me and i got nothing. But the moment i was in a flare i got sick. I'm on biologic. Cosentyx. It is a self injection at home really easy, no pain at all and for now no side effect but less oain, more energy. The company did all the paper to get approved and it was really fast. But i'm from Québec canada.
Hi there Mybirthday1975 - I haven't actually been on Humira but I've been taking biologics for 12 years (first Simponi, then Olumiant, Kevzara and now Rinvoq). Biologics have changed my life, I went from being in pain most of the time, pretty much all joints (except hips and shoulders) affected, not able to work etc to leading a completely normal life. I haven't had any side effects worth mentioning, not even infections. I'm so grateful these meds exist and that I live in a country where I have access to them. I used to be really scared of all sort of meds but now after 12 years or RA and RA meds, I'm completely cured of this phobia 😅Hope this helps! xx
Try to calm down, & do please stop scaring yourself. If you read a patient information leaflet on aspirin, you would be just as scared.
If only one person has a bad reaction….by law it has to be noted on the PIl.
You must know many of us here have been on biologic drugs for years. Most of us do really well….personally I would not give up my Biologic…… and I certainly don’t look for information on Dr Google, which is probably where you have been finding information?
To begin with on Google….you have to know the right questions to ask…..if you get the question wrong…you get the wrong answer.
So do write down all that is scaring you & have a discussion with your rheumy nurse who will tell you the truth about the drugs you have been prescribed.
Good luck..I hope you have a successful experience on your first biologic drug.
But you 99% will not develop Lymphoma. As I said…explain to your rheumy nurse what you are worried about…& confess where you got the information that scared you so,
Your rheumatologist will know what your system needs…& more important, what it doesn’t. He will have spoken to you, investigated the results of the tests you have had & & made his choice of. what will be the best Bio for you.
So relax & go forward having the necessary tests…then embark on your new drugs with confidence..
I totally agree with you. If people started to read the flu medication pamplet and all the common medication everybody take they gonna be surprise. Same thing with all the vaccine.
I felt the same as you initially but they have changed my life. I also was in so much pain and nothing was working and am pretty much normal now and haven’t had any issues with infections either. Tbh this winter I’ve been healthier than most of my friends with ‘normal’ immune systems. I was worried about the risk initially but all patient info leaflets can be pretty terrifying and tbh I put any worries out of my mind as life now is so much better.
I’m on 25ml methotrexate plus biologic without side effects and very grateful for it. Uncontrolled diseases is way riskier for your body than any medication. It does require a change of mindset but opinion on how best to treat RA is unanimous: with strong drugs to control it. The more you read and discuss within RA communities and with RA specialists, the more this makes sense. Good luck. You’re on the right path.
Hi mybirthday1975 - hope you are feeling reassured after the replies you have received. Great bunch of people on this forum and more helpful than Dr Google!!!!!
I think you've been given a lot of wonderful reassurance and information. I remember feeling tentative when I started on the biologics, given I had to sign a disclaimer, however, the fears of cancer being a big scare haven't materialised over the many years they have now been in distribution.
I started on etanercept in 2008 along with methotrexate. I eventually had to stop the methotrexate due to contracting chronic neutropenia, but continued with the biologic to control the inflammation. It isn't a cure and I still had inflammation but to a lesser degree and without the persistent flare-ups. I was diagnosed with ankylosing spondylitis whilst on etanercept after having sJIA since the age of five. I'm now 56. I'm on a maintenance dose of prednisolone too, which I think has greater risk over the long term. I'm now having to reduce it due to it possibly causing high blood pressure, but it's all a balance. Controlling the inflammation is key.
If your RA is uncontrollable I would advise you to go on the biologic if your rheumatologist has given you the go-ahead. They do make a difference and give you your life back. I haven't tried the one you have been prescribed but I'm sure your rheumatologist has looked into your overall symptoms and chosen the one that best targets them. As others have said they don't give this drug out lightly due to the cost.
I also take alternative meds including lifelong vitality supplements and CPTG-grade essential oils from doTerra which have helped me massively and I've not had a flare-up since, but my damage is significant due to not having the availability of drugs to control the inflammation, other than prednisolone when I was young.
I hope you have been given the reassurance on this forum to help you move forward with less trepidation and more confidence your RA will have a better chance of being under control taking the biologic.
Hi, as others have said when you read up on other tablets they all scare you. I have lymphoma, had treatment, it came back and now been on watch and wait for five years. I’ve never been on a biologic, only hydroxy and occasionally steriods. When I came off all my drugs while having treatment retuximab was one of the chemo drugs. When I was about to start hydroxy again my haematologist told me that drug was fine but would advise my Rheumy never to prescribe MTX for me. I prob would be given retuximab if I got worse.
I’m on methotrexate and Adalimumab (Humira), I inject both and have been on this combo for over 2 years, no issues. It’s really helped me but now considering changing biologic as I have returning symptoms, I have no qualms about biologics as I have been fine up til now.
I have been on two Biologics in about 20 years..I do not take MTX but was on it prior to starting Enbrel. These drugs give you your life back. If I have an infection I leave of the drug until I have recovered. Good Luck .
I have been on Humira since 2010 and it was an absolute game changer for me after trying 2 different sets of tablets and regularly swollen joints - it enabled me to get on with life 😃
Iam on Methotrexate plus a biosimilar called Amgevita. I must admit I was similar in reading all the possible side effects. I think they should see how you are with the increase of Methotrexate first and then discuss at length with you re additional meds.
My two meds have helped me significantly and I think you have to weigh up consequences of chronic inflammation on your body versus refuction of it and also lesser impact on joint damage and quality of life. It is a nasty disease that can alter things dramatically if not under control. Also look at anti inflammatory diet particularly around sugar, dairy, oils and gluten Good luck x
I have had 3 biologics so far. Benepali, Rituximab and now Tuxizulimab. Only Benepali worked reducing CRP to around 13. Rituximab was a 9 month very painful experiment that did nothing and at one point put me in A&E. I'm hoping Tuxizulimab will do something. I'm not worried about side effects as the amount of pain I get daily without meds is ridiculous. My advice would be, try to be brave, don't worry but make sure you get regular blood tests. Good luck finding the drug that works.
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