Feel abandoned as do not want to take Methotrexate and my NHS doctor is not offering me any other choices.
Posted Wed 27 Jul 2022 13.00 by Bob
After being diagnosed with PSA a few years ago, I have been in a constant back and forth to a few NHS specialists, who all essentially have given me the choice of Methotrexate or no treatment, knowing that this will end in me effectively being disabled in the future.
I feel abandoned and pretty helpless at the moment as the joint swelling and pain is becoming unbearable and has completely changed my health, due to the inability to exercise, work properly and psychologically affecting my day to day life.
Does anyone possibly know of any way of getting treatment, without having to pay a fortune, that will allow me to acces the newer drugs that are now available?
Thank you kindly!
Posted Wed 27 Jul 2022 13.31 by toothlady66
Hi Bob
Is there any reason why you don’t want to take methotrexate? I’ve been on it for over 2 years and it’s helped tremendously without any side effects. It’s easy to take , you take it once a week and I have 2 monthly blood tests .
Maybe give it a go and if it doesn’t work for you then you will be prescribed something else
I hope this helps and good luck!
Posted Wed 27 Jul 2022 13.36 by Bob (edited Wed 27 Jul 2022 13.36 by Bob)
Hi - I have a lung condition from my first (of four) COVID infections and also don’t want to risk the multitudinous side effects that it gives - it’s a very large hammer for a small enzyme target and I disagree with its use when we have far more directed treatments that aren’t being used because of economic factors. I also had to live with 2 friends and my father who’s lives were decimated by it.
I’ve researched all the NICE and Lancet papers on this subject for over a year now and I absolutely refuse to open my body up to the effects that may or may not happen.
Thanks for replying though !
Posted Fri 29 Jul 2022 19.48 by Hooverfish Psoriatic arthritis but no psoriasis. Have had it for probably 25 years, diagnosed last year. On the "drugs might work" trek.
Hello Bob. I had a very interesting GP consult yesterday... My own GP had said I could only take NSAIDs once every two months, and I was going in to say I needed more, because I have been getting very sore and stiff with a lot of toe dactylitis pain as well and felt it was ageing me 20 years and becoming very life-limiting.
I had done the research, as you have, and it says: forget methotrexate and go straight to biologics, if you are a rich American on private insurance... because the biologics stop the joint damage too, but methotrexate does not. But in the UK and Ireland, obviously cost is an issue, so methotrexate tends to get favoured. I accept this argument, as I am not sure my life quality is worth 100k a year!
My GP was on their hols, so their colleague was on duty yesterday. He had a completely different view regarding NSAIDs. Yes, if you looks NSAIDs up on NHS website, drugs like difene are to be used the absolute minimum possible because of increased cardiac and stomach side effects. However, in this GP's view, it's a quality of life issue. I had mentioned just one difene pill will knock my symptoms on the head for 1-2 weeks. And that when I had a cortisone injection for my damaged knee (not PsA), that also killed all the PsA symptoms for two weeks. "Holiday GP" says they would be quite happy with me taking 1-2 difene pills a week, and the possible side effects are far less than for methotrexate.
NSAIDs were initially marketed as "steroid-sparing" drugs to avoid the side effects of cortisone and its related drugs. The final argument-winning point for me was that holiday GP told me his father, formerly my GP until he retired, agrees with this and takes NSAIDs 1-2 times a week himself, again for quality of life reasons. I always rated the father's logic and research knowledge highly, so argument over for me. I headed straight home and scoffed a difene (with some bread and butter and a banana of course). I've just had my best day for about 3 weeks!
Have you taken NSAIDs and do they work for you? If so, I think you probably need to go back to a GP and ask about whether they are happy to provide them. That way you get symptom relief without methotrexate. But obviously they don't work for everyone, and you must be aware of the need to only take them with food to reduce the stomach problems, keep them to the minimum YOU need, and that you are increasing your risk of cardiac side effects.
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