I I am now taking on 20mg of methotrexate which has increased over time . I have been taking for almost 18 years now along with other medication. but it seems to have lost its affect and doesn’t appear to be working. Have suggested going onto biologics, which others in this blog seem to be pleased with, but not being offered to me . I just keep being offered the all over body steroid to settle things down...
Not sure why I’m not being offered biologics wonder if it depends upon which health authority you are under and if it’s a cost thing? I am under Worcestershire Health Authority.
What are advantages / disadvantages to having biologics?
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JulesCurrie
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Biologics are generally restricted to people with severe and aggressive RA because they are so expensive (£10k/year), and because they do have risks that mean doctors need to feel the benefits are worth the risks. It is a bit of a medieval system that you have to get bad enough to qualify for them. That’s usually judged by having a DAS score of over 5.1.
You can check your own DAS score, look at this info
Thank you though cost probably came into decision. Was beside myself last year feeling very depressed with flare ups. I am not a complainer so generally just get on with life but I was starting to feel very down.
I have been on methotrexate and other drugs for almost 20 years and feel they are failing .
How did they identify signs of erosions I never have any checks other than looking at hands and anywhere that may be inflamed at the time of my checkup ...
I had MRIs, plus my rheumatologist has an ultrasound scanner in her office so checks individual joints when they are painful. My bloods are usually normal so they can show what’s going on.
Sounds like you need to push your rheumy a bit, and maybe complain a bit more?
As you may see have had RA since 2001 RA positive my real frustration is have identical twin who is fine.... you are right I am not a complainer just get on with life when I can. Since diagnosis gave only had one scan. Bloods fluctuate but generally they are okay ... but strangely I am always okay when I have my bloods taken was 6 monthly .... but have recently changed to 3 monthly check....
Hi Jules - I too am an identical twin - my twin is fine too thank God. 🙏
I am on a biologic as RA positive although still experience really sore left hand more than anything, however, so far they are a game-changer. I was put on them as the other product caused me tummy pain i also have a good rheumatologist that ensured I was ellegible, my joints were destroying fast.
I sincerely hope you are granted and find the right one for you.
Have you had your DAS checked.? Unless it’s over around 5.1/2... your rheumatologist cannot apply for funding for biologic drugs ...health authorities will only fund Biologics with a high score over a certain number.
Have a word with your nurse and see what she says...ask if she will check your score for you.
I can sort of understand how you feel Jules, though the thought of biologics unnerves me a little after 11 years on MTX. I've tried double therapy with 3 DMARDS, each has had to be stopped but MTX remains. I feel it's not working as well as it once did & if I go higher than 17.5mg I have issues so remain on that dose & low dose steroids to control me. Lately though I've had troubled joints, mostly in my hands which haven't bothered me much at all before. It's been suggested twice that I may be considered suitable (!) for biologics, both times nothing has come of it. I've had two tel consultations since COVID19, at my most recent in September biologics were mentioned again, as well as having xrays of hands & feet &, depending on those results, an MRI. I had the xrays last month & yesterday received a new appointment for January to be seen in the clinic (original one for 4 days prior was to be tel consultation). So, from that I’m guessing they want to examine the affected joints & discuss the next step, be that what it may.
The advantages differ from person to person but I would hope that it brings the disease under control, the ideal anyhow. But I do know that to qualify for biologics, for me anyhow, means that I’m no longer in the doing fine category & in need of more powerful meds.
It's a case of how bad do you need to be to progress to biologics? If, like I seem to be, you're not quite there, or only just there, then it's a difficult one. I don't know the answer when we've tried all the commonly used & most effective DMARDs & only offered steroids, that's not great either is it? But if it means we've moved on from mild/moderate RD because MTX is losing it's efficacy then, if things were fair, we'd be moving on to biologics wouldn’t we?
I am sorry your present med doesn’t seem to be doing enough. I was told by my senior rheumy in 2013 that when two DMARDS + Methotrexate have lost their efficacy/not worked for you, then you are eligible for biologics. (The NICE guidelines used to specify this and I presume they still do?)
Mtx as a solo therapy for me lasted around 8/9 years then had to add a biologic (I had two failed anti-TNFs and then my current infusion, Rituximab.)
I do think you may have to push for your med to change. (I am an overly tolerant person and was told by the rheumy this wasn’t helping at all as I’d suffer the pain rather than complain/change a medication!) Be totally honest to the rheumy and don’t say it’s ok if it’s not.
I had visible signs of inflammation and my bloods showed I needed something stronger. Then X-rays showed more joint damage.
My consultant pushed me (said she wanted to bully me nicely to go for biologics!) and said .. At the moment we are tinkering around with a little pistol and we need to go in with a big blunderbuss! She was right. I was hesitant for a couple of months re biologics but on a visit for a knee injection I told her I was ready. I had X-rays which gave them enough evidence of erosion on my joints. I have strong feelings about the DAS, so will not talk about that! 🤨
I would talk to your rheumy nurse/rheumy and say you are concerned Mtx alone is not enough to protect your joints. I had an hour with a biologics nurse to discuss the biologic options as they offered three. I took extensive info home with me then decided after a few days, then started a short screening procedure of X-rays and blood tears and TB. It can take a few weeks to get approval and results. That was the same procedure for Mtx, so nothing new as such for me. Good luck and do talk soon to the rheumy department.
It might be an idea to keep a diary of symptoms, take photos if your joints are swollen etc. I know early on I suddenly had a really good couple of days when my appointment came round so if I hadn't taken pics nothing more would've been done. Do tell your team if you're struggling too, that's what they're there for. I don't like to feel I'm making a fuss or moaning either but it needs treating or long term damage is a real possibility.
Yes have kept a detailed diary but when you just have a telephone appointment it doesn’t help ... they wouldn’t read it anyway ... but It was very useful for me because you do forget ..
I suppose on a telephone consult you could ask if there's an email address you could send any photos to if they show particularly bad swelling, heat or deformity. If you're struggling they should be calling you back in for a face to face but if you can't explain to them or show them the issues it does make things difficult. I'm sorry to say my mother has carried on for the most part not complaining to the rheumy team for the last 15 years and she has very badly deformed hands now. She's only ever been on Methotrexate with the odd steroid jab into the hands. I hope you can get some help soon, please make a fuss (quietly dignified obv) if you are suffering. Good luck
I was on sulphasalazine for over 20 years and it suddenly stopped being effective. I took a huge flare up and was put on methotrexate first tablets and then injections, but I couldn’t tolerate either, been on the trail of biologics and I’m about to start my 4th this year, I’ve also been taking oral steroids for months. It is not only cost but also can depend on other medication you are on, and not only your health but family health. I would ask why they don’t put you on biologics. Hope you feel better soon x
I was struggling on 20mg MTX with mouth ulcers and within 4 weeks of being put on a biologic (Humira) all symptoms disappeared and I have been in remission for over 6 years now. Works so well for me. My Rhumatologist was very helpful as I was borderline to getting funding (DAS score) but she did push the case. If you can I would recommend you try and get put on it and prices have come down a bit since it went off patent.
I'm on 25mg methytrexate injection and now have tried 2 biologics. The first didn't work well enough to justify the cost, I can't get below 5 my pred daily, the second made me feel ill all the time and my bloods are all over the show.
They are good if you get the right one but not a guaranteed solution.
Hope you feel better soon.
I feel really crap currently, stiff, sore and no motivation but seeing a consultant in few weeks so fingers crossed for both of us.
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