I was on Tocilizumab weekly injections for a few years but my RA has been progressing rather aggressively. I was taking hydroxychloroquine as a support but had to stop this because I had serious problems with my eyes, serious itching etc. I feel the Tocilizumab did help nevertheless I have been in so much pain that my rheumatologist decided to try another biologic, Imraldi pre-filled pen injections, every 2 weeks. Imraldi is also known as Adalimumab.
So I had the first injection on Monday 10/06/24.
I would appreciate hearing from anybody who has experienced this treatment. Did it make a real difference to your pain levels? Any problems ? How long did it take to make any difference if any? I appreciate we are all individuals and therefore can react in different ways.
I so hope it will help me as I am losing my mobility (have had RA since 1985) and my independence.
Looking forward to hear from your experiences. Thank you so much.
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JGBH
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if you have lots of damage then you may still get pain despite meds controlling your RA. If you type imraldi into the search box and filter for NRAS then all posts about it will come up.
I’d stop worrying as that will not help your RA at all. What makes you think it’s not potent? All the biologics work, you just have to find your one, lots of people are on it but their experiences probably won’t be the same as yours as we all react differently. You just have to have faith it’ll work but it could be quick or you could see a gradual improvement over the weeks. 🤞🏻
Having be prescribed quite a few biologics over the decades I know that some are more efficacious than others - some are not that helpful. Others are brilliant, Entarnecept (Enbrel) controlled my RA so well, I got my life back for 14 years. However, nothing has really worked for me since then, since 2018. I also know we all react differently to drugs.
The few posts I have managed to find regarding Imraldi are not encouraging. They are very few posts… I wonder why. When I have written posts in the past - not on the NRAS community hub - I have usually received many helpful comments. Not so from NRAS… Could it be that Imraldi hasn’t been used that much?
It is VERY difficult not to worry when one lives with pain 24/7 and lives alone, watching one’s mobility and independence disappear. 🫠. I was looking for reassurance that this biologic might work well. That was the point in writing my post. Yes, I understand worrying is pointless and can make the situation worse but that’s easy to say…. I try not to worry but the frustration plus on-going pain do not help. Thanks for getting in touch though. Having read your bio I know you understand. How are you now? Best wishes.
Probably those doing well on it are off enjoying their life and don’t feel the need to join a group like this which tends to attract those struggling and looking for answers. Good luck and let us know how you get on 🤞🏻
Well if one gets a treatment that helps relieve the dreadful on-going pain then it becomes easy enjoying life because at least one can! Not so when one cannot do anything plus having to cope with horrendous pain all the time.
I have received a few replies whereby Imraldi is helping.
I have been on Amgevita 20mg (also known as Adalimumab) since September 2023 for Inflammatory Arthritis. Previously, I had been on Hydroxychloroquine and Methotrexate, and Slazopyrin was considered. However, I had to discontinue these medications due to their horrendous side effects.
Winters were unbearable for me. I barely left the house, and when I did, all my joints ached. My mobility was atrocious; I was stiff, and couldn't stand or sit without being in constant pain. Every movement was agony, and I couldn't type without being in pain (my job involves typing for most of the day). My flares initially occurred every few months, lasting 1 to 5 days, but gradually, the intervals between flares shortened until I experienced a 14-week flare during the summer, which was intolerable.
Since starting Amgevita, my pain levels have become much more tolerable. Although I still get flares, they only last a few days. Stress, trips/stumbles, travel, and food can trigger these flares. Stress is one of my biggest triggers, and I am doing everything possible to manage it. I still need to pace myself, plan rests, and may have to reduce my working hours. Stiffness is probably the thing that hasn't cleared, and I still get stiff when sitting for long periods, so I get up, walk, come back and repeat at regular intervals.While I can still do things, it's not the same as before the illness, and I need to come to terms with that (I’m still working on it). Last winter was much more manageable on Amgevita.
,I am not cured; I have good and bad days. I struggle with daily activities and have had to make many adaptations at home and work, including using aids (occasionally, I need a crutch). Sometimes I'll start the day walking fine, then part way through the day, I'll drop a limp. However, before starting Amgevita, I thought I would have to give up work and my outlook was bleak; everything seemed impossible. Now, as long as I know my limits and don’t push myself, I can manage and limit my extremely bad days (I can't stress enough how important pacing is and learning your new normal).
Recently, I had an issue with my heart (I have a post about that here), which wasn't caused by Amgevita but might be related to my inflammation. Investigations are still ongoing. The worst side effect is my lowered immune system, leading to a severe chest infection at the beginning of the year. Without Amgevita, my life would be very different right now.
My biggest problem is the lack of monitoring by my rheumatologist. I know that with this medication, blood tests should be done every 3 months. However, I constantly have to chase them, and they only want to conduct tests every 6 months at best. I also struggle to get responses from the rheumatology nurse helpline, which is supposed to respond within 48 working hours.
I have a colleague with another form of inflammatory arthritis who has been on Humira, the original form of Adalimumab, for 18 years. He tells me it has completely transformed his life (he couldn't get out of bed before the medication). Like me, he has to pace himself and suffers from fatigue, but his life has been transformed. One thing to be aware of is that he has been lucky; the medication has continued to work for him for so long. Some people build up immunity to it, or it doesn't work for them, and they have to try other treatments. It's worth trying and seeing how you get on; other biologics are available if this one doesn’t work for you.
Many thanks for replying to my post and describing your difficult RA journey. You have all my empathy… I so understand the complete scenario you described. I have had RA sero negative since 1981 but I know I felt symptoms a few years prior to the diagnosis. Was very ill and spent nearly a whole year in hospital. After 6 months- still very ill, I lost my job. Adding more stress to a very stressful situation as you are only too aware. It must be most difficult holding a job when in so much pain and typing plays a large part in your working life. So difficult coping with this nasty debilitating illness. Of course there’s no cure for RA…. They can only try to slow the progression down. Those biologics, when working, give some freedom back but do have serious side effects. We don’t have much choice. We are lucky we can try them. When I was first diagnosed in my late 30s such biologic drugs did not exist then. When I was given in the very first infusion (can’t remember the name, so long ago and I have used quite a few) it made a huge difference to my life, physically and mentally. I could walk again, do some gardening… practice tai chi regularly, did long walks… enjoying life again after many years of being stuck at home in great pain. What a blessing! However, aged 78, the disease is progressing fast and has become difficult to control since I had my second knee replacement operation in August 2018. The wonder biologic drug I had been on for 14 years (giving me my life back) Enbrel stopped working. I was devastated. No biologic has really helped since then and the disease is progressing. Am losing my mobility and valued independence, which is difficult when living alone and unable to drive anymore. So I am now clinging at straws that Imraldi will help me… scary, feeling trapped between hope and despair. Trying to keep positive though.
Is Angevita similar to Adalimumab and Imraldi ? I often wonder whether the generic brands do actually work better than the similar brands. I hope this drug will keep on bringing you relief. Best wishes.
From my understanding they are bio similar. Prior to the patent running out Humera was the only Adalimumab available and was very expensive. When the patent ran out other companies started making it under different names (the way it was explained to me by my rhumy nurse is that it’s like buying boots brand ibuprofen- boots less expensive, buy Nurofen and it’s quadruple the price for the same underlying ingredients ). . My colleague that was on Humera is now ok a biosimlar and he says it works just the same. Not sure of the name of his, but it’s not Amgevita. I’m wishing you all the best x
I am due to start Adalimumab in the next month. I’ve been on methotrexate for almost a year and salphazolone since January. Having been taken off methotrexate due to collapsing and ending up in hospital- I know realise it was working a little bit. But it was no where near enough and every time the steroids stopped I flared significantly.
I have no idea how long I’ve had RA for. It was diagnosed a year ago. But I now know I had very bad flare in 2020 - which I was told was covid and long covid. And I am back to that state again. I’ve had to give up my job this week as working full time in a physically demanding job and being a single patient has proven a little much.
But the point I think I’m trying to make it yes pacing is so important. And trying to keep a positive mindset. I learnt all of that the hard way in 2020 and had it nailed until this year. Where it has all gone rather wrong.
But what I am going to do is find a job that I can do that is more achievable. I’m going to pace myself. I’m going to get better than I am now. And accept this for the fact that I now know it’s not curable (long covid was supposedly and I thought I’d beaten it). But it is manageable. And once it’s in control enough then pottering in the garden, a few walks (even with my stick at 43) are all going to make the difference.
Acceptance feels like the key to me at the moment. I’m not going to have the life I had. But I can make the life I want given the circumstances. I can have the peace I’ve been trying to achieve and I can enjoy my daughter, nature, my home and my friends. I am all too aware of hard that is to realise when you are scared, alone and in pain.
Thank you for getting in touch and sending your positive vibes. Sorry to hear about your battles. Most difficult being a single parent without having to live with autoimmune diseases as well. Having had RA since 1986 I have experienced very many treatments. There were no biologic drugs then. As for methotrexate it is a poison! Not everyone can cope with it. When I was taking it I had dreadful side affects, it made me very ill, yet, when I told my then rheumatologist, she said that was nonsense! The arrogance and ignorance of some doctors is incredible and so insulting to one’s intelligence. Anyway, I told her I was stopping using it (it was as a support to Etanercept). She was furious but I couldn’t care less. It made no difference to the biologic I was talking then and this relief from pain and my ability to getting back to a more or less normal life lasted for 14 years! I have had many other biologic since that didn’t really work well enough and I am losing my independence and mobility. That’s is quite distressing.
I have just started a new biologic, Imraldi, so wanted to hear from people who are on this to out whether it works well. Of course we all react differently to drugs. So fingers crossed.
Hoping Aladimumab works well for you and that in time you can get back to a job that will not tire and stress you too much. Keep positive.
Hi, thanks for responding to my post, and pleased you are in remission. Do you have Adalimumab or the similar Imraldi? Also what dose were you prescribed (40 mg or?) and how often do you inject, every 2 or 3 weeks?
I cannot take methotrexate… it made me very ill indeed.
Hi JGBH. I am on 40mg Adalimumab injected every 2 weeks. The consultant suggests I wean myself of methotrexate which I am slowly doing and hope it does not upset the apple cart! Hope Adalimumab works for you.
I have been on IMRALDI for 14 months, it took about 3 weeks for me to start to see small improvements and pain lessen, 8 to 10 weeks for the drug for me to fully work and now I have minimal symptoms and in remission.
I do hope the same happens for you to, I feel like I’ve got my body and life back and I don’t have any side affects, I don’t know anyone else that uses IMRALDI I feel very lucky that it’s working, best wishes Jen xx
Thanks for replying to my post. So pleased Imraldi is working so well for you! How often do you inject? Every 2 or 3 weeks? And what dose were you prescribed? The dose prescribed for me is 40 mg, injected every 2 weeks. So am at the beginning of the Imraldi journey… another biologic journey… I so hope it will help 🙏.
Hope the treatment will carry on working for you. Best wishes. Jo xx
I have the same dose 40mg and every two weeks, it’s such a relief to feel almost normal, I do have to pace myself or I get really tired, I’ll keep my fingers crossed for you that it works for you xx
Hi, I’ve been on Imraldi since February this year. Previous drug combinations stopped working sadly.
Initially I thought it was great, then I had 2 big flares and I’m not seeing any benefit from the Imraldi. I’ve another appointment with my rheumatologist in 2 weeks to decide what we do next.
I totally understand what you mean about the pain etc. It’s so tiring and frustrating and even with a very supportive husband it’s hard not to feel a burden.
Hi Ferret18 - Thank you for replying to my post. Am sorry it is not working for you. I fear it might be the case for me too since I haven’t seen anyone saying Imraldi has helped improve their symptoms. But fingers crossed.
When did you start feeling better once you started Imraldi? I hope your rheumatologist will help you soon. One has to wait SO long all the time with great expectations then comes disappointment when the drugs do not bring any lasting relief. RA is such a destructive illness, not just physically but also affecting one’s mental health because of the on-going pain and losing one’s mobility and independence, eventually. I live alone so it’s not at all easy and I do understand you are feeling like a burden… but you are not. You’re just unlucky to have RA, like many people. I feel like a burden too when I stay with my family from time to time… they live far away and have demanding careers, so not easy. They say I am not a burden but I feel I am… was so independent so difficult having to accept peoples’ help. Best wishes.
I started to feel better within a couple of weeks but on reflection I wonder if it was the lasting effects of the steroids I’d been on? Not sure how long the effects last.
My rheumatologist wanted me to try imraldi for 6 months before considering changing it. I do understand why - you can’t keep chopping and changing after a couple of months, but I guess in this modern world we want solutions yesterday!!
I have been on Imraldi now for a few years and it has been a game changer for me. Nothing prior to this had any effect on my arthritis but the inflammation and pain stopped almost immediately once I started injecting with Imraldi. I inject it every 3 weeks. I really hope it works for you.
Thank you for your reply. It’s the first positive response I have received so far. So perhaps there’s a glimmer of hope for me… So pleased it is helping you. How many years have you been on this drug and can you remember how long it took before you noticed a change?
Am surprised you inject every 3 weeks… is it because the dose is more than 40 mg per pen injection? I was told every 2 weeks… the dose is 40 mg.
What other biologic were you on before trying Imraldi? Have you ever been on Enbrel (Etarnecept) in the past? I believe Imraldi is a similar type of biologic, anti TN factor. Best wishes.
I started injecting Imraldi in July 2020, so almost 4 years ago. If my memory serves me right I started to feel an improvement almost right away, certainly within a few weeks, and for the past 4 years I have not been in pain with the arthritis. I still feel a bit stiff coming downstairs first thing in the morning but that eases once I start walking around. I also struggle a bit to stand up from a seating position but I think that is more to do with the fact that my muscles are weak . I’m fine once I’m standing and can walk long distances without any problems. I just need to exercise to build up my muscles.
Like you, I initially injected the Imraldi every 2 weeks but as I had had no swollen or tender joints for 2 years my rheumatologist decided at my appointment in November 2022 that my arthritis was in remission and that I should increase the Imraldi injection interval to 3 weeks but if I experienced any joint pain or swelling or stiffness I should immediately revert to 2 weekly dosing. I have continued with the 3 week cycle since then since my morning stiffness disappears so rapidly. My dosage is 40mg too.
Thank you again for giving further information. I do hope your remission last for a very long time.
My hands, wrists and fingers are swollen, deformed and most painful. Difficult doing anything, even getting dressed, cooking, etc. I cannot drive anymore because of my hands … So I wonder whether Imraldi will help… fingers crossed.
Unfortunately I am not able to go for walks anymore… just little walks in my garden. Have to be careful not to fall.. I use a stick for support. Do manage to walk without a stick in the house.
Hi, I try to respond to posts that are relevant to my experience, but due to time pressures take a while to see the posts. I have been on imraldi for abut 18 months, fortnightly injections 40mg etc. I noticed an improvement in a couple of weeks after starting it. It has been helpful, though I still get low grade pain in my hands. My previous drugs were firstly methotrexate (lost lots of hair) then Lefluonide and this didn't work. So for me, imraldi was an improvement. Good luck with the drug, hope it eventually helps, and if not, try another type. There seems to be lots of alternatives.
Hi kc, - thank you for your reply. Your post is most encouraging. Pleased you felt the benefit of pain relief so rapidly. May I ask you how long you have been diagnosed with RA? This is simply in trying to establish whether the drug works best on people who have not had RA for too long, in my case 38 years (but had symptoms much before the diagnosis). I will still keep my fingers crossed…
The crux of the matter is that I have had RA for so long and I have had so many treatments, many biologics…. My RA consultant told me they were running out of possible drugs for me. Really ?
The best one was Enbrel (Etanercept) that works wonderfully well for 14 years, up to 2018, never had any other biologic working this well since.
How do you manage to look after your hands? It’s so difficult when one can hardly use one’s hands…
Hi, I have only had RA for about 4 years, so not long in comparison to you. I am lucky as I am surrounded by people who can help me when my hands are too weak to do some things, but mostly they are not too bad. The strength loss and muscle loss is very irritating. My mum has it too since early 20's, now aged 94 and has never had any treatment, refused. Her hands are like claws and can't move/flex at all, so I had treatment to avoid mine getting so rigid like hers as she can't really do anything with them as she can't feel either with them due to the condition. I am really lucky with my treatments so far. I do hope that Imraldi works out well for you.
How sad your mum didn’t accept treatment. I suppose at her age she felt it might be too risky regarding side effects. It’s wise of you to have started the treatment and I hope it will bring you remission for as long a time as possible.
In my case having had RA for so long … am n sure it will help BUT I will keep positive and hopeful.
I have had RA since 1998 and was on azathioprine for over 10 years then methotrexate after that but my condition deteriorated quite badly so I started Imraldi injections in December 2022.
Imraldi has changed my life practically no pain anywhere and not one side effect either
Injections have slight sting but who cares about that when your living a proper life again
I really hope you experience the same from Imraldi and wish you good luck and hope my post gives you some real hope for improvement
Thank you for getting in touch. Yes,RA destroys one’s life… the pain… the limitations, the frustration etc.
Am pleased Imraldi has made such a difference to you. Wonderful! So make the most of it, enjoying doing things, life. I assume this is your first biologic? I have had many biologics… and RA since 1986 (although I had symptoms much before that date). So it is getting more difficult getting a drug that works for me now BUT am still hoping I will get some relief and perhaps some life back but I am rather limited in what I am able to do now.
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