I had PMR for 4 years and have now been diagnosed with Psoriatic arthritis. I started methotrexate 14 weeks ago and it doesn’t seem to have helped at all. I don’t have visible psoriasis and never have. I am having to take 800mg Brufen twice a day to deal with pain and stiffness and this seems to work.
I started this this week having had a weekend where I was so stiff I could hardly walk. My left knee has been swollen to twice it’s size. This is the joint that gives me most pain.
I don’t have any nasty side affects of methotrexate except I am just wiped all weekend I take it on a Thursday.
I am just wondering if anyone else has same experience. I am beginning to wonder if my diagnosis is correct. My inflammatory markers are still up slightly.
I am not speaking to the rheumatologist until July via a phone consultation.
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JulieR2
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Julie i was the same i have RA. I went onto the metroject 20mg injections taken every week at the end of last year. Ever since the change is fantastic. I havent had side effects. Even the tiredness is almost gone.When on the tablets i felt terrible, still flaring really bad and sleeping more than a sloth. Maybe worth asking your consultant about the injection see what he says.
Hope you get some relief soon.
Hi Julie. Your still very early days in your journey and treatment. Definitely talk to your rheumatologist or nurse . It sounds like your disease is not yet under control. Many and myself included don’t find the right medication or cocktail of meds straight away it takes time 3 years for me but finally things have improved. For others it is much quicker. Patience is the thing we learn the most with RD as most drugs take 3 months minimum before we know they are working .
Do keep in contact with your team regarding side effects or disease activity they can’t help if they don’t know. Good luck x
It sounds like your medication needs tweaking - mine has been changed several times during the 2 years since I have was diagnosed with good results. My Methotrexate dose was gradually increased until I was on the maximum and then Sulfasalazine was added; I was always on Hydroxychloroquine and this triple therapy is working well for me.
I've been lucky in that it's worked to some extent from the outset but each change has improved things and because it was pre-Covid, I was seen more regularly in the early days and didn't wait long between adjustments. Since Covid, I have initiated things by ringing the rheumy nurse helpline and the consultant has agreed to change things each time. If you have a similar setup, it would be worth ringing them to see if they can do anything before your appointment.
I was on the tablets and my body could not cope. However a friend of mine has been on it for years and has been great. No straight path on the RA road. 😎
Like the others have said everyone is different with different results. I am also on triple meds methotrexate hydrochloriquine and sulfasalazine however it took just over 6 months for the combination to show results and has been stable now for the last 16 years with only the odd flare every so often. I also had the swollen knee thing and they drained it and that was it. Stick with it and you will find the right drug combination eventually and get your life back and try to stay optimistic.
I was overseas when the RA diagnosis was made. At first I was on 15 mg. It took about 4 months to have an effect, but once I was stable the consultant was able to reduce the dose gradually until I was on the lowest dose possible. When I returned to the UK, I was considered well enough to come off MTX completely. However, there has been a recent flare-up and I am now back on 10 mg weekly, hoping it will be as effective as before. Good luck, JulieR2. Methotrexate does take a while to take effect but if you are no better, say, after 12 weeks, perhaps talk to your consultant.
Hey JulieR2... I had the same experience with the side effects of being tired almost every day along with headaches. I was on methotrexate tablets, sulfasalazine tablets and then my rheumatologist added chloroquine... The stiffness and pain in my joints was unreal that I could not stand up lie down, get dressed, get undressed, pretty much anything by myself. So then prednisone was added to my daily list of medications. After 3 months of excruciating pain and stiffness, I got a cortisone shot in my left knee which helped almost instantly. But I still had great pain in my neck, right elbow left foot and both hands which still made daily tasks difficult. I went on methotrexate injection once a week so that eliminated the tablets but I still took all the other meds. I have to say the injections worked a lot better. After 5 months of having prednisone along with everything else and still having the stiffness and mobility issues, we decided that I would try a biologic injection, erelzi which eliminated all my tablets. So now, having two injections once a week and no tablets except a folic acid, I am doing much much better. I'm hoping to go back to work soon but unfortunately I'm waiting for an eye surgery. One thing I have learned is that although it had taken months of trials with different combinations of medications, eventually I was lucky to find something that is helping me be more independent. I am fortunate that I have a great rheumatologist although he's a hundred miles away but always with just a phone call, he's always there for me. I wish you all the best and Hope that your doctors can find something that works for you
Crumbs that is tough for you but so glad you are so much better. I have had prednisolone for 4 years when I was diagnosed with PMR that never totally worked either. I am still in work but struggling so am hoping that getting the right combination will mean I can stay in work
Hi Julie my experience is v like yours.I have PsA, I also have pretty much no visible psoriasis and no nail psoriasis. Although more atypical, it is possible, more like myself, to have no symptoms of psoriasis and still get PsA. Sometimes a minor injury like twisted ankle with me is a trigger to start it off and usually it effects the major joints in an asymmetrical way e.g left knee but not in the right.
Also more typical with PsA is that it does not respond to MTX like RA does, which has been shown in studies so say 15mg on its own may not be enough. Sulphasalazine typically does not work well in PsA from studies. Historically it seems that treatment for PsA was first inherited from RA treatment as PsA is less prevalent, while they can use similar drugs and the condition has a similar life impact, they are quite different diseases.
If you have 3 or more joints that have not responded to a DMARD drug over time, so say 4 months each, then that puts you within the NICE requirements for getting a biologic.
I take a biologic with MTX which works in a synergic way. The MTX wipes me out too so I have to take it on a Sunday otherwise I could not work. But it’s a price to pay to have the treatment!
I’ve been on so many ups and downs any support I can give I hope helps.
Thanks so much that is so helpful. I have a symmetric joint issues. Left knee, right shoulder and two fingers on my right hand.. I guess I feel so tired of the stiffness and pain. I was diagnosed with PMR at 51 and took prednisolone four 4 years. So was shocked to get the PSA diagnosis tbh. I do wonder if I will ever be able to move without stiffness and pain, but hearing others stories is so helpful. I am 56 now and I am struggling with the psychological impact in that the demands of my job will make it impossible to continue if I don’t improve! But let’s see in the next 6 months before I throw in the towel xx
I’m glad that has helped, I have right knee and left ankle, it was when the wrist started to be involved that I got my three joints. I went through MTX 15mg, then 20mg, then 25mg, then MTX 25mg with 1g of Sulphasalazine. Each change required a period of time to prove it did not work for me to hit the NICE guidelines for biologic. The biologics have worked for me but if I stop taking the meds for just 10 days the swelling all starts to return. It’s been really hard with work, so totally sympathise. It’s also been hard when nothing seems to work but at the end of the line are biologics and they are the most effective treatment. In some places like the US biologics are started early on as they have a different funding process. So stick with it and keep in close contact with your consultant, after 3 months say it does not work and what is next. The light at the end of the tunnel is biologics if nothing else works. I’ve gone from pain, stiffness, no hope to now being able to start riding a bike, where before I could never imagine that would happen.
Hi Julie l was on Methotrexate For 6 years ago because I was diagnosed with rheumatoid arthritis. My hair thinned out a bit but it helped me. I haven’t taken it for 2 years now because my rheumatologist put me on Olumiant which is a biological drug.Hope you find the right treatment sometimes it takes a while before you find what is good for you l wish you all the best.
It can take 3/6 months for any effect to take place , I had a kenelog injection before I started methotrexate as flare was awful ! I’m now jot on methotrexate I have an injection every two weeks
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