Yuflyma
hi there, I was diagnosed with psoriatic arthritis a few years ago after suffering Terry pain and many other symptoms, I basically thought I was going to die. I met my consultant and was put on methotrexate tablets, then injections but had terrible stomach cramps so I have now been put on Yuflyma injections every 2 weeks. I have now taken 2 injections but I honestly don’t feel that much better, can anyone tell me if they’ve taken Yuflyma and if it works for them and how long before they began to feel better. Thanks
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sorry I’m a new member, Wendy
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Hello @WendyGoode64
I started on Yuflyma 3 months ago (I have R.A.) and I started to notice a difference after the 2nd injection - I felt better in myself, although it took a few more weeks before the pain lessened. I am still suffering quite a lot but have been told it can take 6 months to get the full effect so I am plodding on in hope! As with all medications, the experience differs with each individual. Some people get an immediate good effect, for some people it just doesn't work at all - but there are alternatives. It's a long journey…. don't despair.
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I've got my 3rd injection Monday I'm not sure how I feel but I'm a lot better then I was all low I'm still on a low dose of steroids 2/5mg and sulfasalazine which I've had for years and I just stopped taking methotrexate nearly a year ago because it made me feel I had the hangover from hell constantly and then it started making shiver like I was freezing cold shaking like I was having spasm that scared me and it's took all this time to start yuflyma I was scared to inject
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Hello @WendyGoode64 welcome to the community,
It is great to have you join us and good that two members ( @Eeyore and @deny63 ) have already responded to your questions about Yuflyma. As you can see that we all react differently to medications but we find on here that the support that is given by other people going through a similar experience is really helpful and stops us feeling so isolated.
So do stay in touch and let us know how you progress.
Take care
Poppyjane
If it would be helpful to talk to someone ring the Helpline 0800 5200 520
Monday - Friday 9.00a.m. - 6.00p.m.
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thank you
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Thank you for getting back to me, as you say it’s such a lonely journey and having to wait so long for Yuflyma (I tested positive for tb and had to have a 4 month course meds which were awful) I was finally thinking that I would have some kind of relief and although I’ve only had two injections it really seems to be taking forever
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I was also told I couldn’t take steroids with Yuflyma is that right because they really seemed to help
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I also have psoriatic arthritis as well as enthesitis. I'm not on Yuflyma but on a different adalimumab biosimilar Amgevita. I've been on it since July 2021 and take it alongside sulfasalazine and methotrexate. A week after my second injection I could feel a bit of a change and by two months in I was able to hand back the crutches I'd needed to walk. I'm back to walking my dog 50-60kms a week. I'm not cured by any means but I'm a lot more mobile and don't have anywhere near the same pain levels.
I've had a number of steroid injections during the time I've been on adalimumab.
I know we are all different and react differently to drugs but adalimumab has certainly helped me.
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I think I will discuss being put back on steroids with my consultant and possibly adding another medication, thank you for your advice
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the reason I'm still on steroids is because I just stopped taking methotrexate injection because the side effects got so bad I stopped taking them and my head felt normal again but my body started to fall to pieces I could barely get out the bed I wanted just give up living i have know quality of life so I ask my nurse for some steroids and they new I was going to start the new injections which I was terrified of taking and then a nurse came to my house and talked me through everything and I took the first injection while he was there so they know I'm still on steroids but I will ring them so I can find out if I need to come off them
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yes but I feel the same, I don’t seem to be able to function without the steroids I’m just getting through the day, existing really, I can’t wait for the day to finish so I can just cut off and go to sleep when I can but the Zopiclone works unless I wake up with cramping in my feet and up the side of my calves and then I’m walking around for 2 hours hope something works soon
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sorry to keep moaning to everyone but when I got up this morning I could just about walk, my knees were so painful and I could hardly move my hands. It took about 3 hours for the pain to go in my knees but my hands are still painful, I’ve never had this before, can anyone tell me if this has happened to you because it’s really frightening and I thought I would have to go to hospital 🏥
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I want to write something that is going to help since we have similar experiences. Apologies if this doesn’t help!
In a nutshell, yes I have experienced what you are experiencing, albeit with feet and hand pain. There have been times where I could hardly walk down the stairs.Since taking Yuflyma I have gone into remission so they say, yet I still carry the stiffness and general pain around with me everyday.
Please do keep in contact with your Rheumatology Team. I personally found my local rheumatology advice line and specialist nursing team very very helpful. Call them and ask for help.
I’ve also found great success - in my own anecdotal opinion - with lifestyle changes. Namely avoiding a stressful mind and significant diet changes. If you want to try something then do look at buying a Rheumatoid Arthritis cook book - there is lots of opinion about food groups that might be contributing to inflammation which I agree with. Whilst I still have occasional flare ups of inflammation and more severely, fatigue, I do think that in combination with Yulflyma my lifestyle changes have helped. In summary these things include;
changes to my life to avoid stressful thinking/ mindexcluding foods that may cause inflammation; gluten, all artificial sweeteners, limiting sugar, potatoes, peppers, tomatoes, aubergine (deadly nightshade)
taking care of my stomach’s microbiome by increasing fibre intake through eating more veg. Eating fermented foods frequently and consuming kefir and things
staying hydrated
It may just be the Yulflyma doing the talking, but I do feel better.
I hope your position improves soon - look after yourself. Let food be thy medicine ✌️1 -
I can only comment from my own experience. The initial reason I was referred to hospital by my GP was due to a significantly swollen left knee. At hospital my knee was drained and I was sent on my way. I was back a month later with the knee swollen again but by that time I could also not close my hands. By sheer chance the doctor who saw me was the head of the unit and had previously been a professor of rheumatology. Whilst draining my knee he asked out of the blue whether I had psoriasis (which I have but it's not visible) and diagnosed psoriatic arthritis after a thorough examination. The issue with my hands added to my recurring knee problem was what prompted the question about psoriasis and helped lead to his diagnosis.
I've read that the small bones and joints in the hands and feet are often more affected by PsA and that's the case with me. I was also diagnosed with metatarsalgia of the feet.The joints in my hands and wrists feel overworked most of the time (even with taking sulfasalazine, MTX and adalimumab) and a few of them have now become swollen and misshapen. I wear compression gloves which I think help and I do hand exercises daily using exercise putty and a stress ball. I've equipped myself with aids such as an electric can opener, jar opener and hot water dispenser to try to avoid strain on my hands.
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Thank you for replying, I’ve now been put on a course of steroids which has already helped, the day before my knees went I had a really stressful day, does stress cause flare ups for you and yes I have started getting certain kitchen utensils to help with my hands
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just one thing if you have partners do they understand what you’re going through because when you look ok but are in pain on and off I find it frustrating and difficult to talk to mine
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I am absolutely certain stress / stressful thinking causes RA or at least encourages flare ups and inflammation.
As for partners - no, mine has not been able to understand.
This is from someone else on here but I love it, Stick it on your fridge.
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Also look up Rheumatoid Arthritis Spoon Theory - they even have t-shirts.
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I don't know if stress has a bearing on my PsA - though coming from a family of psoriasis sufferers we were always of the view our psoriasis was worse when under stress so it could be a factor. My psoriasis first showed itself when I was studying for my O Levels. I'm retired now with all my kids grown and flown the nest so I don't know if I notice any stress other than that caused by my PsA. What I am sure of is that when I've been ill with other issues my PsA gets significantly worse. In 2020 three weeks after my PsA diagnosis I was taken into hospital with pneumonia. One of the blood counts used for PsA determination is your CRP count which is an indicator of inflammation and/or infection and is normally 2-3. The combination of PsA and pneumonia meant my CRP count ended up reaching 340. I had never felt the levels of pain in my joints as I did then - I'd describe it as if nails or a wedge had been hammered into my joints. My wife and son were with me at the time - it was during the 2nd covid lockdown - and saw first hand what it was doing to me so they are very aware of how bad it can get. I had 2 recurring bouts of pneumonia and a number of chest infections in that first year and my PsA was awful. I wanted the medics to treat my PsA but they concentrated on the pneumonia/infections. Thankfully it's never been that bad since the 3 drug treatment I'm on kicked in completely. It still get worse when I've other ailments now but not to the same degree.
Much of my first year before my PsA was controlled I depended on both oral Prednisilone and Kenalog injections - they certainly helped me.
I hope your Yuflyma biologic starts working soon.
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