This headline page 15 in the i newspaper today 26 th October. Written by Tom Bawden science correspondent.
It reads very similar to what a lot of you are saying.
Also Interesting paragraph from the article’More than 70% of all patients prescribed methotrexate, as recommended by NICE stopped taking it completely, with 54% citing unpleasant side effects as the main reason.
Sorry I can’t forward a link but my IT skills don’t extend to that .
Hope you get to read it 🤞
I
Yes, I read that article earlier and thought it was interesting. I think the information may have been suppied by NRAS - but not certain. I also thought it was a very accurate reflection of what many patients on this site (particularly newly diagnosed people as that's who they were mainly referring to) - have expressed quite regularly. Definitely seems to be some shortcomings for a number of patients in their early consultations with regard to how long is spent with them, and how well everything is explained regarding what to expect from the condition itself, and the various treatments. The level of non-compliance with medication (particularly Methotrexate), from people who hadn't been given much time or explanation was quite eye opening.
We have the i and my husband pointed out the article to me. I was surprised at the figures re medication non-compliance but sadly not by the poor treatment some have experienced because of posts on here 😢
I count myself very lucky as I have an excellent rheumy department and have received good support throughout the pandemic.
Absolutely, there are so many meds available these days, to keep people on MTX when the side effects are prohibitive just doesn't seem at best good practice and at worst unethical. We all know effective treatment early in the disease process leads to the best outcomes, gets people's lives back on track...gets them back into employment, and minimises the complications of RD hence reducing the costs to the welfare system and the NHS.
I wonder if anyone has ever carried out a costs/benefits analysis of early effective treatment with advanced therapies (for those MTX is not working or has intolerable side effects) and the savings to the welfare system and NHS ?
Now that would be an interesting piece of research....NRAS 😉 ?
I was continually encouraged to stay on MTX , and said no more after 11 months of hell with side effects and no noticeable improvement to my tenosynovitis.
Two years on my gut has still not fully recovered.
I have been taken off of MTX due to ground glass appearance on my lungs and i won't be put back on it. I did well on it and was sad to stop it to be honest as my health has gone downhill since i was told to stop it. xxxxx
I was diagnosed earlier this year with pulmonary fibrosis, and rheumatologist asked me to stop MTX, which I’d been on 5yrs. I was gutted as it controls my peripheral symptoms, I have AS. However when I seen the respiratory specialist she said views have changed and the evidence no longer suggests MTX is a cause, but can actually delay onset of symptoms, so she insisted I continue with it, as uncontrolled inflammation would be worse for my lungs and the fibrosis would progress quicker. So k continue on 25mg MTX
I know there are many people on here who have or have had bad experiences in this vein. I can't complain about my treatment, it has been excellent throughout my time with RA. I wouldn't like to be newly diagnosed now though. I think for many reasons standards are slipping. It seems I was 'fortunate' to have been diagnosed so long ago and with a fantastic rheumy team that, although changed over the years, has remained brilliant.
This is the report from NRAS. Glad to see that it had some publicity - but we need to go on causing waves to make it possible for short staffed rheumatology departments to do their job properly. And perhaps more rheumatology department should sign up to automatically referring people to NRAS for informed advice and help.
What may be a little confusing is that the reporter said the survey was commissioned by the Rheumatoid Arthritis Society. It was only when he quoted Clare that he name it correctly.This was also reported Nearly half of patients who later switched from an oral tablet to an injectable device for the same medication felt that it had had a positive effect on their quality of life. But of course the negatives make better headlines!
What hasn't been picked up on yet is it was a survey of 589 patients & we have 400,00 RD patients in the UK. My maths was never good but is that 1.5% of those in the UK with RD who took part in the survey, anybody who can work that out do say if I’m wrong? If it is correct that is a very small percentage. Another angle, we regularly say here those who aren't members here have no need for our site & are most likely doing well getting on with their lives so the survey could be considered inaccurate. That is including MTX… how many didn't know of or weren't offered injectable MTX & so potentially may have remained on it had they. I'm aware it doesn’t suit everyone though. We all know that Rheumatology always seems to be understaffed & quality of treatment/appointment times vary enormously. I think maybe if it was a more extensive survey, not limited to the NRAS members who completed the survey?
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