Frustrated

[RAlife2018]

I have moments I’m emotionally okay and then I’m just not. I was diagnosed at 33, I will be 35 this October. Started on Methotrexate with lots of lymph node flares, decreased from 10 to 5 and back up to 10mg. Then the Dermo for psoriasis freaked out I was on MTX and switched me to Cimzia which clearly did not help at all. Reinitiated MTX and feeling better, so I thought. But I must be flaring again as my knees and hands are hurting with lots of dull pain. MTX has done a number on my memory and cognition despite the folic acid. I don’t know how one does this the rest of their lives? How do I do this? Feeling frustrated.

[oldtimer]

Really sorry to hear that you are so frustrated and in pain again.

I can only say that for a lot of us it just does take time to find a suitable treatment.

With 'personalised' treatment which is now under research this should improve, but that will probably be another 8-10 years yet.

Meanwhile it is trial and error, mostly error. And pain and side effects and feeling terrible.

Are you able to have steroids for a quick boost of relief?

Keep good personal records and nag the medical team for help. Those who shout loudest - no, that should be 'persist quietly and politely but firmly' get the best treatment.

Best of luck and a virtual hug.

[Mmrr]

I'm sorry you are not so good. I'm with old timer, you do need to let rheumatology know that you are not doing well. Keep at them.

[Hidden]

Unfortunately life with RA can be a rollercoaster 🎢 both physically and mentally. I’m 64 and had this disease for 22yrs and been on lots and lots of meds and still looking for my HOLY GRAIL. We all just learn to live with it as it’s wasted energy trying to fight it. Keep up with your painkillers and listen to your body! If your tired rest, if you have pain take your meds, if no improvement after a few weeks get onto your rhumy nurse and explain how your feeling. You can rant on here all you like as we all know where your coming from, take care 🤗 💐X

[Hidden]

I agree with what has been said so far. I pestered and pestered it took 4 months till I got a appointment. I sent emails I phoned I sent photos. This is not in my nature to be a nuisance but I needed to be heard and helped.

Stay strong you will find a way x

[Kerensa21]

MTX did for my memory & cognition too, utterly depressing. Good news is they were back to normal when I came off it. Can’t give any better advice than old timer’s, if it’s making you miserable let rheumatology know. Hope you find something with a better balance of quality of life & disease control soon x

[RAlife2018]

Thank you everyone for your supportive replies. I will get back to the doctor office again. It is nice to feel heard by y’all considering this silent disease is not much understood or validated by the outsiders. Thanks for listening. Y’all have a great evening! There is always tomorrow to look forward to.

[Winnie53]

Understand exactly where you're coming from. It's not easy to fight when you're feeling rubbish but I'd encourage you to seek medical help and to emotional support. I'm the worlds worst at keeping things to myself - my advice is don't! Talk, talk, talk to someone, you need support cos you're worth it. All the very best to you.