hi i've done 4 imraldi injection now every doing one ever 2 weeks.
No good effects yet but know its still early days as only 8 weeks in in a flare at the moment and everything very swollen and struggling to walk again so all v difficult. But since starting the imraldi am struggling to sleep more than about 3 hours at a go as have awful stomach pains in my bowel and bladder especially at night starting the night of injection and lasting about 10 ten day after . Though it was a UTI so painful weeing but have checked that and its not. Bowel so crampy left side and needing the toilet alot ...TMI i know.
I have had sort of similar abdo issues in the past so thought they'd come back but now are all around the injection now every injection is the same the night of injection so painful .
Is this a side effect that anyone else has had any tips managing abdo pain does it go away?
How long does imraldi take to work on the RA in other peoples experience ? Thankyou for any advice you can give me 😘
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Alicepirate
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Hi I ok with the actual injection I'm lucky as know some people get really bad pain in injection site. its just the bladder and bowel pain that I really struggling with but I must just keep on with it as gotta give it a big go. Was just wondering if the abdominal pain was a common side effect it is listed on the side effects to report but the rheumy nurse said she'd never heard that side effect before . It definitely is related to injection and I dont feel worried about injection so I dont think its like an anxiety pain . I get night sweats and stuff too for abot 5 days after injection but I can manage that, I had my menopause years ago so its just like that .
Hope we both get a miracle soon or even a subtle improvement 😘
I am 16 weeks in to starting Amgevita and feeling the best I’ve been in 3 years since diagnosis... so stick with it 🤞🤞I still dread my weekly methotrexate injection which stings like heck and makes me feel nautious but I don’t get any of that with my fortnightly Amgevita injection. But I have developed really bad tummy cramps since starting Amgevita which are wors when I go to the loo. My rheumatologist is adamant that this isn’t being caused by the drug but could possibly be IBS that’s developed as a consequence of the stress my body’s been under .. and to investigate with my GP ??
How long did it take for you to get any result from the medication ?
Im fine with the actual injection I'm luck it seems not to hurt too much on me, Know for some people its agony . I'm only on the biologic no methotrexate I do have IBS anyway but its different to that its like have a UTI but I dont, its so painful as soon as I lie down so maybe it is just one of those things I have to put up with al around my back today hurts today too . I'm just wait to see if it works though . Its just difficult isnt it it such a wait to see if meds work. Know I need to wait another 4 months to see properly but every injection seems worse effects all bad at the mo but hopefully they are a sign meds are working and building up as first injection bad effects only lasted a couple days now they last 10 .
I'm new to RA only had it a year so I suppose Ive just gotta be patient I'm self employed so it's very difficult as have to work I can 't be off sick .
Really good to hear someone with meds working, thanks for answering hope you tummy pains improve
Hi. The hospital had said that it could take 3 months before I felt any improvement from the Amgevita injections but I was lucky and felt some improvement within a couple of days of the first injection, although it didn’t last very long. As I had more injections, the improvement began to last longer and now is constant. However at the same time I also had steroid injections direct into my ankles (3 months ago) which were particularly bad, and so some of the improvement I’m feeling may be from them rather than the Amgevita?? Hard to say really and I suppose only time will tell for sure. I just know I feel the best I’ve been since being diagnosed. I hope you find something that can work as well for you. x
Hi Alice I can’t say I experienced side affects but sadly it didn’t work for me, I found it really stung on the injection & I read a post on here previously that it was something to do with salt.. I hope you start to feel benefits soon.. I’m in the same boat as I’m week 3 of Abatacept and just like you waiting to see some marked improvement but the side affect are pretty awful, luckily I have an apt with Rheumy in 2 weeks so we can discuss how to move forward..
Thanks for your reply its just v difficult waiting isnt it as start everything with such high hopes How long did you spend on imraldi?
Hope you start to feel some improvement soon sorry to hear you struggling with side effect too. Just would be nice to get a little bit of 'normal' back wouldnt it .
I having rails put in my house on monday as have finally given in to the fact I'm not suddenly gonna be 'better'. Still hopeful though but stairs are a nightmare at the mo so will make it alot safer
Hi Alice, sorry to hear about your side effects. I had awful GI issues earlier this year, but they were before I started the Imraldi injections. They think it was a combination of uncoated 1mg prednisolone and Leflunomide tablets which I took for over a year without omeprazole to protect the stomach. Those issues resolved after a few weeks of omeprazole and lowering my doses of tablets. I then started Imraldi. That was 4 months ago. No side effects to speak of, but also no benefits so far either. I had to come off steroids for an ultrasound scan of my hands and review of my bloods this week, and I was in agony... even though my DAS was 6.4 they want me to continue for another 8 weeks with Imraldi before they scan again and consider something else. I'm hoping it'll just kick in at some point, but I'm not convinced it's the drug for me 😔. Maybe you'll be different. Hang on in there, but make sure you get the GI symptoms looked into, so you know whether it needs treating.
Sorry to hear you not having any results yet. I'm not on steroids at the mo had a course over the summer but it didnt help, I have osteoporosis and I'm 45 so have to be really careful with the stomach protector and steroids and I have a hiatus hernia and IBS ... ridiculous list really as I lead a healthly lifestyle and eat healthy but had a hysterectomy for something I didnt have that turned out as a mistake... as its caused issues..... RA (maybe hormone change) and osteoperosis defo.....
Anyway not meaning to moan but just have .. Such a long wait isnt it i know its the same for everyone , nothing can be done just have to try the meds in order and see . Is it just done on price and you just move up through the meds do you think ?
Ive not seem my rheumy since last Aug have a phone appointment next month with nurse imagine it will just be carry on and see. I know it cant be helped but it is hard for us all
Hope you have a peaceful weekend let me know if you start feeling better
Thank you. Yes, I agree, there seems to be a hierarchy of drugs, probably in price order, that we are asked to go through until something works. When you have to wait 3 to 6 months each time to see if it works, it's like wishing your life away! I sometimes think about all the drugs I've tried that haven't worked, and the potential damage they've caused along the way... 😔
My rheumi nurse told me last week that there's work going into a blood test to ascertain the part of the immune response that's causing each person's RA - which will enable them to prescribe the right class of drug straight away. It's probably a few years off, but imagine how amazing it'll be!!
That's really interesting I'm sure in 5 years time this will be done differently as must cost the NHS a fortune the v expensive drugs we all have in our fridges that only a small proportion work ,can't be helped at the moment and fab we have the NHS , but it does feel mentally exhausting the hopeful start on the drugs then the wait and the worry.
My hairs not falling out as much on imraldi as benepali so that's a positive
Ive not yet has anything that worked apart from the steroid injections but them only helping lasted lest than a month I think and I have osteoporosis now so cant have those now . Its hard to remember but know the RA is just swelling up my hands and knees and my hips are bad now I'm really struggling to walk. It's easier with a stick but then can't use a stick because of my hands grip and pain . probably a common RA thing. I was only diagnosed last August so still confused about whole thing really and how quick it gets bad .
Hi, sorry that you are having so many problems. I was on Imraldi for about 18 months stopping it in May of this year. I didn’t have any gut or bladder problems, my main post injection problem was headaches. I too found doing the injection soooo painful and I would have an area on my leg, about 5 inches round, which was red and hot and itchy. After about 13 months I found that the drug wasn’t lasting the 2 weeks and finally only lasting about 4 days I was back to square one. Because of Covid it took a lifetime, or so it felt, I have now been swapped to Abatacept and after 7 weeks I am finally starting to feel so much better, not quite there as I had got really bad but I getting there. No painful injection or sore injection site. Hope that everything settles down for you. Keep positive and stay safe. BB. Xx
Good morning,I'm new here ,I'm am in the exact situation as Bessieboo1 with the exception that I'm still on Imraldi ,I had an appointment tomorrow to see the rheumatologist as Imraldi stopped working completely ( it never worked as good as Humira), unfortunately I just received a call from the NHS saying that my appointment has been cancelled again 😖, instead they will give me a call
I was for 10 years on Humira pain free, they've changed it to Imraldi and 12 months later ...Hell knocked the door again .
Bless you that’s not so good, hope that you manage to get something sorted out soon. When the Imraldi stopped working for me I ringing the hospitals RA advice line and begging for them to help me. I was totally exhausted and the pain was unbearable. I was going to work as a staff nurse in an outpatient department 20hrs a week but I was totally wrecked. Look after yourself, stay safe and keep positive. 🤞you don’t have to wait too long for some new meds. Xx
I just had the phone call, so I asked them to put me back on Humira, that can't happen anymore, money related apparently, so they are going to give me an steroid injection for the pain ,carry on with Imraldi until they can assess me in 4 weeks times after the lockdown 🤷
I was told that they can only switch you 4 times to a different drug, after that if nothing works..they stop everything ,I thought it was a bit harsh
It's hard yeah, been going to the gym/ exercising for the last 5 years, I was feeling great mentally and physically ,life was back on track...now it feels like the pages turned back to chapter 1
Will have to wait an see I suppose, trying to keep positive as much as I can
No, that’s terrible. Surely if the Imraldi is not helping and you have had previous success with other meds then they can try going back to Humira or try one of the new Jark Inhibitors. I am sure that I have read several people on here before who were on Humira and were changed to Imraldi got them to change it back to Humira when they hadn’t got on with the Imraldi and it wasn’t actually that much more expensive. Hope that you get some relief from the steroid injection. Xx💜
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