Still waiting

[Pepperpot22]

After diagnosis last October, I was put on 15mg Methotrexate beginning of January. No improvement after 9/10 weeks so nurses upped the dose to 20mg. Have taken new dose 6 times now, but still no improvement. My steroids are being tapered down so pain levels are high. I’m hoping that the new dose will still kick in, but RA helpline nurse says that at my nxt appt in 2 weeks, they will look at adding another drug in. What is everyone’s experience of the combined drugs? Really hoping for something to work 🤞Wud luv to hear some success stories to give me hope!

[Boxerlady]

I started on Methotrexate and Hydroxychloroquin and after going up to 25mg of Methotrexate ( by injection so the highest dose) without success, Sulphasalzine was added and that really helped so my Methotrexate was dropped to 20mg. Triple therapy has been good for me so try to stay optimistic - I hope that you see improvement soon 🤞💐

[Pepperpot22 in reply to Boxerlady]

Gud to hear that it’s working for u! Thank u!

[14bubbles]

I was on hydroxy alone for a few years, which always worked ok, not great but ok then I got worse so they added mtx 20mg which I started in May last year and it is definitely working for me...again, not perfect, I still get flares but they are much milder and last for less time than they were...I hope you find what works for you soon

[Pepperpot22 in reply to 14bubbles]

Thank u. Sounds like uv found a level that u can cope with 😊

[AgedCrone]

I’m afraid you will have to be patient…. Mtx is a great drug..it’s regarded as the Gold Standard DMard for RA…but it can take a good 6 /8 months to kick in 100%….so give it another couple of months then have another word with your rheumy nurse. As she said, it maybe youwill need to add anothe drug to kick start things.

I had 7 very successful years on Mtx …..with no infections or any other nasty side effects, before moving on to a Biologic 6 years ago.

So keep up the weekly dose…& try to be optimistic.

[Pepperpot22 in reply to AgedCrone]

Thank u. It sounds like I need to give it more time. Hav no side effects on methotrexate apart from headaches for a few weeks to start with, so I hope it works 🤞

[Hidden in reply to Pepperpot22]

Keep your water intake up.

[helixhelix]

i was on triple therapy for 8 years (MTX, sulpha and hydroxy) and it worked great.

[Pepperpot22 in reply to helixhelix]

Gud to hear!

[Garnacha]

I started initially with etoricoxib, then hydroxychloroquine was added & at the time didn't have a precise diagnosis, 6 months later diagnosed with psoriatic arthritis & methotrexate was added 20mg & told to stop hydroxychloroquine, within a few days was in absolute agony so told to restart hydroxychloroquine, then 4 months later lefluminode was added, I switched methotrexate to sulfasalazine about a year later as although it was all working as such I couldn't stand the side effects of methotrexate even after swapping it for metoject so I'm currently on 4 different types 🙄🤣

[Pepperpot22 in reply to Garnacha]

it’s very much trial & error isn’t it? Wot works for one person doesn’t for another. 4 different types! Ull be rattling! 😂

[Garnacha in reply to Pepperpot22]

🤣😂🤣😂 not forgetting the gabapentin & cyclazine 🤣😂😂 x

[oldtimer2]

Have a look at the treatment pages on the NRAS website. It explains the different sorts of combinations of DMARDs (Disease Modifying Antiarthritic Drugs) and their profiles.

nras.org.uk/resource/drugs-...

[Pepperpot22 in reply to oldtimer2]

Thank u. A lot more options than I’d realised!

[helenlw7]

Mtx and a biologic worked for me until the biologic, Etanercept, stopped working - after 10+ years. I’m now on mtx and a JAK inhibitor. I still have pain but it’s manageable.

[Pepperpot22 in reply to helenlw7]

Wonder if the body just gets too used to it after so long? 🤷‍♀️

[helenlw7 in reply to Pepperpot22]

I think it must, although Baricitinib has also stopped working, after less than 2 years. My rheumatologist is going to change me to a different JAK inhibitor after I’ve had knee surgery.

[BeachsideVia]

Hi! I was on 200 mg of Hcq last year and I did not think it was helping so I stopped. After a few months I was getting RA flares that were never ending. Unable to walk, unable to plan anything. 12 weeks ago I started MTX, last two weeks injections, 17.5 mg. I have PN from chemo so I take a low dose of lyrica, 25 mg x 2 a day. No other pain meds at all. Since starting the MTX I have noticed that if I did get a flare, it lasted a day, not 2 weeks! I was looking for a “cure” all the while having improvement. I am understanding this better, with the help of this group. Now I am thinking of going back on HCQ, with the hope of improvement, not remission or cure. I can tell I am wired for “cure”. Take a pill and it will go away. I have changed!

[Pepperpot22 in reply to BeachsideVia]

That’s a gud way of thinking about it. I’ve been thinking that I shud feel loads better by now. But if not on methotrexate I’d prob be much worse! Thank u!

[Hidden]

I have been on a Mtx and Sulfasalazine combo for 12 years. Both were incremental increases. Now on 25mg Mtx weekly and 2000mg sulf daily (2x2).

If sulfasalazine is offered make sure they prescribe the ‘coated’ one as it’s better for your stomach.

[Pepperpot22]

Thank u for that advice. Wud not hav known that!

[Angels54]

Hi think most of us have to take extra drugs to get pain under controlled.

[Pepperpot22 in reply to Angels54]

Yes, seems more usual than I’d realised!

[KathleenMary]

I have limited scleroderma and severe Raynaud's, since the scleroderma diagnosis I'm on both hydroxychloroquin and methotrexate plus losartan and fluoxetine to help the Raynaud's

I find it so hard to know if the drugs are working.. and when I asked my consultant he merely said "well we are keeping it at bay"

That might be the case but my Raynaud's is worse than ever and since a partial hip replacement in January ,one shoulder And wrist have been very painful

It's hard isn't it?

[Pepperpot22]

Sounds like uv had a tough time 😢 It is hard to live with pain

[Hobbledehoy]

You’ll get there, don’t doubt it, but as everyone so different, trial & error common. Best wishes.

[Pepperpot22 in reply to Hobbledehoy]

Thank u!