I have been on Methotrexate for 4 years but have a few joints that are not fully controlled and have seen some serious degradation in my wrist in particular which is often sore so my consultant has put me into biologics. She persuaded me on the basis that the disease is silent but affecting my joints even if I don’t have pain.
I just got my first delivery of Amgevita and I’m too scared to take it after reading the side effects. Even some marked “common” are terrifying! It was never explained to me how serious some of the common impacts are and now I feel hesitant.
Typically, having waited months and months for this prescription, my overall stiffness is minimal and mobility pretty good! My biggest challenge is horrendous fatigue. I don’t even know if that’s the disease or the methotrexate.
I know that long term, the sooner I get control on the issues which are probably bubbling away despite no pain, the better. But I feel nervous injecting more drugs into my body when the side effects could be far worse than I’m suffering right now.
Has anyone else felt like this before starting biologics for the first time??
If I was in a lot of pain and struggling with mobility I wouldn’t hesitate but I’m ok in that regard right now. My consultant just says ‘so let’s keep it that way’. If the Amgevita would combat the fatigue - that’s the most useful thing it could do for me.. but that doesn’t seem to be what it does!
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hope-always316
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the thing is you don’t know what it’ll do for you unless you try it. Something is causing the fatigue. If you look at any drug info there will be horrible possible side effects listed, even paracetamol and definitely mtx but you’re taking that. I too was very worried about biologics and put them off for years but in the end just upping my mtx wasn’t working and I was more worried about getting even more joint damage and the effect that would have on my life. You can always stop it if you have horrible side effects but don’t go looking for them. Often they will settle down after you’ve been on the drug a while, like other drugs. That’s what happened to me. These drugs cost a lot of money and we are lucky to be able to get them prescribed. You could always have a chat with your nurse for reassurance you’ll be monitored. Lots on here are on biologics and they’ve changed peoples lives. Let us know how you get on 🤗 good luck 🤞🏻
probably very true - just the nature of all that inflammatory working away on the inside I guess. I am still 6 years in getting my head around a simple case of food poisoning triggering this disease and my life being forever changed 😑
I think we all have been there but these days I’m too scared not to take my med(s) and have uncontrolled RA. The manufacturers have to cover themselves with every side effect and possible scenario stating all possible side effects, but the likelihood is very low with most serious side effects. I felt like you too when starting biologics and NRAS helpline were brilliant at being the voice of reason and sense. I’m sure Amgevita people on here will reassure you. Good luck. 💗
Don’t know if this may help you in terms of working out what the side effects information means in terms of how a drug may affect you. Not nearly so scary when you realise that out of ten people 9 won’t get a side effect……
Frequency Very Common
Common Uncommon Rare
Very Rare
Definition
V Common: 10 people are given the medicine, at least 1 of them is likely to get this side effect.
Common: If 100 people are given the medicine, approximately 5 of them may get this side effect.
Uncommon: If 1,000 people are given the medicine, approximately 5 of them may get this side effect.
Rare: If 10,000 people are given the medicine, approximately 5 of them may get this side effect.
V.Rare If 100,000 people are given the medicine, less than 10 of them are likely to get this side effect.
Because of the ‘don’t sue me’ culture prevailing in every walk of life, if the manufacturers don’t list everything that’s ever happened to somebody somewhere they’re not covered for insurance. These drugs are tested on thousands of people before they get to being licensed and most of the benefits outweigh the risks by far. Try it, if it doesn’t suit you come off it but it may just be the one you’ve been waiting for………..Good luck!
I delayed moving over to biologics for about a year as I was worried about the increased risk of infection. Whata stupid idea! In that time I got some small erosions.
Yes there are risks, but we are well monitored. And I do everything I can to minimise risks, so really try to live properly to keep good blood pressure, weight and cholesterol.
For the majority of people the benefits do far outweigh the risks. And everything in life has a risk - you could be the one that eats the dodgy prawn that puts you in hospital with salmonella for example.
You have to be comfortable with your choice, but try to be as balanced as you can be,
All good points. Ironically to your last comment - it was actually a bad piece of chicken pakora which gave me food poisoning and whilst recovering from that, I contracted flu which kicked off my immune system. From previously completely healthy to immobilised by inflammatory arthritis all down to a piece of chicken.
I have spent the last year trying to restabilise following a bout of viral gastroenteritis of no known cause. Simce starting on biologics I have been hugely careful! Won’t go near a buffet, avoid dodgy lookimg takeaways where food has been hanging around but still managed to pick somethimg up. It happens.
I was doing brilliantly on Enbrel, which failed to work after the gastro. Was put on Amgevita which did nothing, and am now tryimg Roactemra. In the 3+ years I have been on biologics that gasto was the only event - no side effects, no nothing. You may not be the same, but apart from infections side effects are really not that common on biologics.
I guess it’s down to you and like you; I always look at the side effects as unluckily- I tend to be the one who gets everything! But —- biologics are great and life changing. I’ve just been told tonight that I will most likely start biologics in March - I can’t wait honestly. I ve never liked MTX nor the concept of counting out all those tablets on a Monday morning. Anyhow take the plunge. Think of being in remission.
Getting away from Methotrexate was one of the reasons I was looking forward to being accepted for biologics therapy but my consultant told me at my last appointment I need to stay on methotrexate for life alongside the biologic as more recent research suggests it’s more effective when they’re taken together. I must admit I was really disappointed. I’m only on 15mg of MTX as I couldn’t tolerate 20mg but I’m sure it’s a big part of my general fatigue. To think ‘this is it’ for life was a real blow. I thought I was ‘upgrading’ to a better medication when in fact it’s just adding more into the mix.
With my rheumatologists consent I stopped taking mtx altogether whilst taking Amgevita. Not taking mtx has had no negative impact on my RA and significantly improved my quality of life
Hi. I have been diagnosed with Rheumatoid Arthritis for about 8 years . I started on Hydroxychloriquine and some 6 monthly steroid injections which helped. Then the Rheumatolgis convinced me to start Sulfasalazine and avoid steroid injections. I've been on that for almost 1yr which I think helps. I've had a recent flare but think caused by stress and lack of excercise. I've managed fine on those two drugs, sore every day but managed with pain relief and Ibuprofen. Now I have been advised to start Methotrexate on a low dose and I'm petrified to add more drugs in! Especially as I am aware of all the additional side effects and I work with babies children and families and think I'll end up ill with infection and side effects. I'm 64 but don't want to retire yet! I've had the same advice to take Methotrexate to stop me getting worse! I am in pain and stiff in mornings but still manage to work and ride a bike sometimes. So not as bad as some. I'm going to speak with a nutritionist to see if can help. They were medical retired and younger than me. Managed to change lifestyle and get off medication.
I'm scared the additional methotrexate will tip me over the edge and I'll end up with other medical problems. I really don't know what to do ! I'm a nurse who has an anxiety about long term side effects. Sorry going in but I can relate to your message.
Hi I've been on Amgevita for a couple of years now and has really helped me so far. As for the fatigue it doesn't help that. Think that's something we all have to live with. I also take methotrexate. I have no side effects that I know about. Scary taking new medication but if it helps in the long run. It's swings and round abouts if the disease don't get you the medication will 😂. Anyway good luck and wish you all the best 👍.
if it helps my daughter was on metho for 3 years with horrible side effects and uncontrolled juvenile arthritis then went onto biologics with no metho and she has no side effects and is in remission 4 years later. Still gets exhausted but not so much.
Good luck. It’s a journey of trial and error and tinkering along the way!
Hi hope-always316 , I understand how you're feeling and have felt the same way myself. My consultant wanted to prescribe amgevita months ago but I was reluctant because other, non-biologic options for escalating treatment hadn't been tried and the effects and implications of taking amgevita weren't explained to me by the team.
There are a lot of lovely encouraging messages from folks already taking amgevita here, so hopefully there's some reassurance in those. If you're feeling more strongly reluctant though, it might be worth exploring whether any other routes for escalating treatment are any open to you, like switching to MTX injections if you're on tablets (this can increase its effect) and/or adding further non-biologic DMARDs. I've done both and both have helped, though of course there's no way of knowing if things would have been better with the biologic.
At the very least, your rheumatology team might be able to offer you an ultrasound or MRI to see if there is any joint damage, if you feel that would help you to make an informed decision about what to do. Wishing you all the best, it's not easy working out how to weigh it all up is it.
I was diagnosed 3-4 years ago at age 56. I understand your concern although I was, and still am more worried by the methotrexate I inject than the biologic (Amgevita) I inject. I also take hydroxychloroquine and folic acid.
The methotrexate was never quite enough to control my RA but adding in the Amgevita 18 months ago was a game changer and I have my life back now. I’ve also been able to reduce my methotrexate dose from 20mg to 15 and recently down to 10 🤞. My aim is to be on as few drugs as possible eventually but for now I’m enjoying my life again. As for side effects I suffered extreme hair loss and nausea to begin with on methotrexate .. now overcome. Since starting Amgevita I do seem more prone to indigestion, acid reflux but that’s manageable. I’ve dealt with covid and a sinus infection in the last 12 months but not suffered anything major. I eat in moderation anything I fancy including pate and unpasteurised cheeses … nothing is off limits.
Hope you’re able to resolve your concerns and enjoy life too. 🥰
oh my gosh! I just went for my TB test today to get ready to start Cosentryx . I feel the same. I don’t feel too bad. Do I really need this new drug. What if it is terrible and I end up with an allergic reaction, or thresh, on and on it goes. Wow! Your inflammatory arthritis was triggered by chicken. That’s crazy. Anyhow, I am sure others have way better advice but wanted to let you know I feel the same. Scared.
Ive been on Amgevita for over 3 years and I have not developed any side effects whatsoever. Likewise, I was scared initially but I soon realized that I was feeling better without the horrible side effects of the various DMARDs that I had been on before.
The injections are only every 2 weeks and, they can be a bit sore for about 5 seconds! I have not developed any cold and I have not caught COVID either.
The fatigue that you have is likely to be a sign of inflammation. I have never heard of a rheumatologist prescribing these extremely expensive biologic drugs without clear evidence that you need it. Just go for it and try. I promise you that you will get use to it.
I was also petrified! I've been on it a year and can honestly say it has been really good. I have the side effects of bruising easily and dry nose/eyes/mouth. The RA is well controlled. My only issue is that the Amgevita may be wearing off slightly a year in.
yes !!! I was very worried when I started Humira ( same thing) but a person came to supervise me . She came from Guildford !!!!!! I live in Cambridge ? Ridiculous ! The books which come with the injections are alarming but informative . I was thrown by the fact that my GP would NOT discuss this drug and its side effects . I hope yours will and that if you do have a problem you can get through to Rheumatology .
Try it , you can always stop .
It did not work for me , it works well for others .We are all different . I have the same dilemma , I’ve been very reluctantly staring at the Methotrexate I should have started 6 weeks ago. I have not, because I’ve had sinus infection for that long and now something like Covid but, I’m negative , strangely joints are not bad .
thank you! Weirdly I have had a congested nose for several weeks - I *think* it started when I got my Covid + Flu jag together but can’t quite recall. It’s extremely annoying and until it shifts I think I will hold off the biologic until it sorts itself out. I wondered if it was a sinus infection but it comes and goes… very odd indeed. One minute I’m breathing fine (usually first thing in the day) but by evening Im totally bunged up and sound like I have a terrible cold!
I was pretty reluctant about taking amgevita but it’s been an absolute game changer for me. I no longer need pain killers and ran 8km at the weekend.
I would suggest it’s worth giving it a try - if it doesn’t help you don’t have to take it forever.
I no longer take mtx and now have less fatigue (which I found to be a side effect). I’ve not experienced additional infections while taking Amgevita and wasn’t too poorly even with covid.
Good luck, I hope you feel less fatigued very soon.
that’s brilliant! My rheumy told me I would get better results staying on methotrexate as well but I really want to taper down to 10mg and maybe even off of it. Even if I don’t have much pain or stiffness (I’m at the gym twice a week and have very little pain day to day) I admit she has scared me a bit by saying the joints can be degrading even without pain. I guess as another poster said, asking for benchmarking scans would be the only way to know if I could ‘get away’ without methotrexate. I’m absolutely sure it’s a huge part of my fatigue.
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