*UPDATE* I just wanted to say a massive thank you to everyone offering support and sharing their experiences. You all helped me so much yesterday and I feel heard and supported. I have just been invited to biologic screening for this sunday so hopefully this is the beginning towards a new path to less pain and getting my life back 🤞
Hi, I was diagnosed with RA Jan 2024 but symptoms started March 2022.
I started on MTX injections in July 2024 and the side effects were the worst thing I've experienced. I then moved onto Sulfasalazine Nov 2024 until now.
Sulfasalazine just stopped working for me about 6 weeks ago following some very stressful events.
Today I can barely walk with sore knees and now I've got pain in my jaw for thefirst time. Elbows are also hurting today.
Had a call from thr Rheum team today saying to increase Sulfasalazine dose until my referral appointment screening for biologic, specifically Adalimumab Yufluma. Please can you share you experience on this drug? I am scared and have a fear of needles (makes me nauseous when I had MTX jabs).
I am also really struggling to work at my job through the pain and fatigue. I don't feel my employer cares as long as the work is done. It's been very hard not to slip into depression as I feel like I am just surviving minute to minute.
Sorry this is long. Thanks for listening 💚
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EmeraldTopaz
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Oh sweetheart. The new drug works in a very different way to metho so don’t fear the worst. You can also ask to have a drug that is not administered with a needle for this very reason. I would look at the NRAS handbook on working with RA. I’d also ring the NRAS helpline. Feel for you. X
Generally the biologic drugs have fewer side effects than methotrexate. Hopefully this will be true for you. Ask your rheumatology team if there is an option for some CBT treatment for needle phobia. It worked really well for my daughter.
Thank you for your reply. I had injections for MTX and just didn't get on with it. But I will ask about CBT therapy for needle phobia. Thank you for the suggestion.
I really feel for you. I personally had no problem taking Yuflyma but sadly it hasn’t worked for me. That’s not to say it won’t work for you…everyone is different. Please don’t worry about the injections, you can barely feel them and for me the side effects were nothing like the first few weeks of methotrexate. Is there any chance of getting a prednisone injection (steroid) to tide you over until the new treatment starts? Might be worth asking as you’re struggling. Take care x
I have the same problem. I started taking adalimumab in January along with leflunomide for psoriatic arthritis and it doesn't work for me and there's no improvement. Can I ask you if they changed you to another biologic???? And how long were you on it if it didn't work???? I have another appointment at the end of April and I don't know if they'll change to another biologic or keep me on this one longer. Thank you
I started it in August last year and I’m just waiting to start Rituximab now. I feel like I gave it long enough to know it wasn’t the one for me 🤞🏻for the RTX.
Thanks for your reply. The Rheum nurse offered me a steroid injection yesterday but I declined as I had 2 before in my knuckle about 1.5 years ago and they didn't help. I'm hopefully going to pick up some co-codomol today to tide me over in the interim until my biologic screening appt.
Subcut injection is different to joint injections. Well worth a try. No harm done if it doesn’t work. They also inject it in your er behind so you can’t see the needle!
Bless you, I was where you were a year ago.. methotrexate was truly awful for me, and still left with terrible knee pain.
Yuflyma worked for me literally overnight.. went from being unable to bend my knees through pain, to running up the stairs again. Though I appreciate it may not work for everyone.
I don’t have needle fear, so can’t imagine how that is for you on top of all of this. Though you can’t see the needle in the pen, and it’s mostly like a pin prick. As long as been out of fridge for a while so it’s not cold.
I hope you manage to get seen soon and they can find a medication to suit you.
I also really struggled with work, and had to make big changes, so I really feel for you.
Thanks for your reply. I had the injector pen with MTX and made myself nauseous thinking about it, then my hand would always shake while injecting.
I'm really pleased to hear a success story about this biologic 💓
I need life to return to a normal baseline so I can get through the days of work and mum life. The pain makes everything....hard. I just feel so tearful and depressed.
If you have fear of needles, Yuflyma is something you inject yourself, do you know that. Sorry to be blunt. i was on it for 5 months and it did not work for me but as thye say the famous line evryone is different. i dont think sulfasalazine is ever enough by itself when things are bad, i am surprised they not given you any striods?
Thanks, I appreciate your honesty. I will have to give it a try and see if I can get past the fear of injections. I had to use MTX injections for 4 months last year and really struggled with facing my fear of injecting, plus the added fear of the side effects that came along with it.
The Rheum nurse offered me steroid injections yesterday but I declined as I had two in the past that didn't work for me. I'm going to pick up some co-codomol today to help with the pain.
When I was prescribed yuflyma the injections were once a fortnight, so it was less often than most injection medications. I think that's the usual dose for RA, though it varies for other conditions.
Hang in there. It can be better with biologics in the medication mix. Be prepared to wait for positive effects to be felt. I was diagnosed jan 24 beginning with methotrexate then added yuflyma August but had to change to tocilizumab in Oct. Feel like a different person to this time last year! I used the NRAS literature to support my discussions with line managers which helped when preparing a risk assessment. There is a duty to provide reasonable adjustments so you should go to meetings with ideas about what will help you .Hope all goes well
Thanks for sharing your experience and it's great to hear another success story. I work from home but I will look into a risk assessment. I'm am struggling with brain fog, fatigue and managing the pain.
Ask the GP for numbing gel and apply thirty minutes prior to injecting. I started Yflyma 3 months ago and I’ve been fine with it. Good luck I’m sure things will improve soon for you.
I am on MTX and was on Sulfasalazine. I was struggling. Adumilab came along now I'm more or less in complete remission with no side effects. I hope it's the same for you. I have it every two weeks, it's easy to administer and you never see a needle...just a quick prick but not too painful. Vegan diet can also have a good effect....as a side note.
Thank you for sharing your experience and I am so happy to hear of another person doing well on biologics. That's great that it's bi-weekly injections. Thank you for mentioning the vegan diet. I definitely notice my symptoms get worse when I eat meat or inflammatory foods. I never drink alcohol anymore and have also given up my favourite drink 2 weeks ago - coffee 😨
I had my first injection of Yuflyma on Monday. I had a FaceTime consultation with a nurse who went through everything with me and watched while I did the jab. I hate seeing needles but with the pens, you don’t see them at all. It was less painful than the methotrexate jabs that I was on in 2023. I had to stop methotrexate though due to side effects. I’ve been on Leflunomide and hydroxychloroquine since then and now the biologic has been added.
So far I’ve had no side effects from the Yuflyma at all, other than a slight headache. Working with RA can affect us all differently, some work full time and others have had to reduce their hours.
I hope that you are able to get on okay with the biologic and it helps your symptoms 🤞🏻🤞🏻
Ahh thank you so much for sharing your experience. I'm so happy to hear you're doing well on your medication. I feel very reassured that you said the biologic injection hurts less than the MTX injection.
I currently work part time over 3 days but have been looking to increase me hours when my youngest starts school this year. Not sure that's a good idea as I'm in such an unsettled period but I guess only time will tell. Hopefully the biologic screening appt comes around swiftly although I was told 6-8 weeks.
I’ve been on Adalimumab since November, I’ve always taken methotrexate in tablet form so not sure what the reactions to the injections are. Adalimumab injections I’ve found sting slightly on injection but that’s about it, I inject into the top of my leg, I never fancied doing it into my stomach. I don’t think I’ve had any side effects yet 🤔 what I did notice was the next day my feet stopped hurting, they have hurt for most of the time since being diagnosed in 2021 😊 I have had no other pains since 🤞 hopefully it’s working for me.
Hi I was on the original Humira for 12 years & it was the best Biologic for me. If you ask for the pens rather than the injections then you don’t see the needle. You just push the pen against your skin stomach or thigh press the button & it does it automatically. They are really easy to use. Good luck. 🤞
I have only just started Yuflyma recently, 2nd jab was on Monday. Like you i tried Methotrexate, tolerated it for 3 years but in the end said enough was enough, constant nausea. Also tried hydroxychloroquine before that and leflunomide after, but they weren't agreeing. Sulfasalazine has been a constant with me since 2017, on the maximum dose of six tablets daily for quite a few years, but it isn't enough. So far there have been no major side effects with Yuflyma apart from serious fatigue on the day after injecting, this wears off though, pain has more or less gone instantly apart from odd pain here and there. I hated the MTX injections as they stopped giving it me in pen form, the Yuflyma is so easy, just press it against your leg / stomach etc & wait for two clicks, then 5 seconds & take away, you don't see the needle either. It took my Rheumatology dept two years to agree for me to start on a biologic after going through all the other DMARDs. available. It's surprising reading other comments that other Rheumatology departments are more willing to try biologics sooner than having to wait for you to try at least 3 DMARDs, but i suppose i had better be grateful that they have agreed in the end.
There is no needle to look at with adalumimab - you take the end cap off, press the exposed end to the stretched skin and push the plunger. There is a little stinging sensation, then a click as the liquid has gone under the skin. Will that help with the needle phobia?
And I found it absolutely miraculous.I was one of the lucky ones and it worked straightaway for me. I had not realised how much pain I just put up with until I didn't have it any more.
I had a terrible time with methotrexate (and it was just as difficult convincing the rheumy team that I did). It was not until my dentist wrote to the consultant to say that he strongly advised that I should stop it as my mouth and gut health were suffering so much, that they actually believed me.
hi. Sadly for me yuflma didn’t work enough, when I was having them fortnightly. And weekly made me ill. But the injections we let ok. It takes less than 10 seconds as it’s a self release pen. The side effects were far less worse than methotrexate.
I've been on Adalimumab for 19 years. Initially Humira and now the biosimilar Amgevita. When I first started it was a really chunky injection, but now it is a pen delivery and very easy to do. As you can probably guess, as I've been on it so long, it works great and I am very happy on it. I hope you have the response. The nausea you have might be the effect of the methotrexate not the actual jab.
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Change of meds
Just feeling so very low
mtx and adalimumab/ Idacio
