NRAS

Confused

I have not been on for a little while. But I am feeling confused about treatment?? I started Methotrexate back in July and then decided to go off it about 3 weeks ago, because I was not feeling good. The Methotrexate makes me feel no different with my RA. I am still stiff, hard to even bend to tie my shoes. In the morning a slow start but then after moving I feel a little better. But if I sit, I get stiff. My waist down is the worst. Started taking CBD oil and I think it helps, somewhat but most of all, helps with calming. I am frustrated with my rheumatologist, all I want is a doctor who listens to your fears, but also gives you other options..

Bought four RA books about diet etc..

I see my rheumatologist tomorrow and I hope it is better conversation with understanding on where to go from here.

What is the best drug for RA? Other than Methotrexate?? I cannot take steroids orally because I am allergic. Any suggestions?? Sorry for the whining..

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This may not be what you want to hear, but it's possible that you haven't given the MTX long enough to have a full effect. Three months is not very long in RA world, especially if you started on a low dose and built up to a full dose. If MTX works for you then it is one of the best drugs for controlling RA so don't be surprised if your rheumatologists asks you to try for longer. And all drugs have risks. Do also remember that uncontrolled RA is a huge risk too, especially for heart and lung problems.

However, if it doesn't work then there are other drugs. But there is no "best" drug as it is so individual. What works for me may be useless for you. And most rheumatologists will have a preferred sequence for proposing drugs.

However, looking at lifestyle changes can only help you. But think about things like exercise, and rest as well as diet. They are equally important.

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I fully agree with Helix. Have you ever looked at the NRAS website. There are lots of links to reliable information about medication, exercise,diet etc. They also have a very good helpline, if you want to speak to someone. I hope you find a solution soon.All the best.

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This capsulised summary/ infographic may help clarify initial DMARD treatments (including Methotrexate) & the 3 other common options, Olmettig:

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Managing Patients Taking DMARDs

(Disease Modifying Anti-Rheumatic Drugs)

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🛅 INFOGRAPHIC (pdf): bmj.com/content/bmj/suppl/2...

A visual summary of the 4 most frequently used DMARDs, including recommended monitoring & conditions that may interfere with treatment:

1 • Methotrexate (MTX)

2 • Leflunomide (LEF)

3 • Sulphasalazine (SSP)

4 • Hydroxychloroquine (HCQ)

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"Symptoms of inflammatory arthritis are often controlled in the long term using DMARDs (disease modifying anti-rheumatic drugs). These are usually initiated by rheumatologists, with patients commonly taking two or sometimes three DMARDs simultaneously. This graphic shows information about four of the most frequently prescribed DMARDs, including recommended monitoring and other conditions that could interfere with treatment."

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📰 ARTICLE: bmj.com/content/358/bmj.j32...

[Many thanks to Man_Oeuvre 'BMJ DMARD infographic': healthunlocked.com/nras/pos... 🙏 😌 ]

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This audio interview with sleep scientist 👨‍🔬 Matthew Walker ( psychology.berkeley.edu/peo... 👨‍🏫 ) helps us understand the importance of quality/ deep sleep 😴 💤 :

Sleep Scientist Warns Against Walking Through Life 'In An Underslept State': npr.org/sections/health-sho...

[Transcript: npr.org/templates/transcrip... ]

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Wishing you the very best, Olmettig. 🙏 🍀 🌺 🌞

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As the others have said it takes a good few months before working properly and maybe you need another dmard to take with it, I tried 3 dmards before going onto a biologic and take methetrexate along with it, but it took me 3 years of chopping and changing to get to this stage it is a slow process and everybody's different but I'm quite well controlled , hope you find a combination that works xxx

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I agree with the others, above. I started off on Salazopyrin and was fine for a few years but then started to get flare ups and evidence of disease progression. My rheumatologist started me on low dose methotrexate, building the dose up to 15 mg gradually. It did take about 3 months on full dose to start to get results and now I'm very fit and well and in remission. And so thankful!

Please give it a bit longer, it's worth it! Don't forget to take your folic acid to reduce side effects too. If it doesn't work then, well your rheumatologist will need to explore other options or biologics with you.

Good luck, Ally x

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Hi,

Have to agree with the rest.

I take MTX having tried Azathioprine first. MTX works for me and has given me most of my life back.

It did take a good 3 months to begin to work it's magic. And then it was a case of a few tweaks here and there before it put me where I am today.

Like with all these drugs we have no choice but to be patient.

Joy

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Hi it's hard . No how it feels not listening.methotrexate din not help me either there are other dmds.they did not give me any said painkillers a d physiotherapy the way ahead.seems depends on wot rumatologist you get.maybe they feel the risks outway the benefits as they are not good drugs .Don't no .see how you get on next week.

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i came off methotrexate myself 2 weeks ago I was on them for 6weeks ,I was so ill feeling and being sick ,hair loss and foggy head. My joints were less painful but because how I felt I couldn't function now off it feel fine except pain back in my joints x

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Six weeks is no time at all for Mtx to have worked for you Annie it takes typically 8-12 weeks (personal experience) but if you've had such awful reactions I hope you can talk ASAP to your nurse or rheumy. They could suggest splitting the dose over morning and night or talk about injecting Mtx. I switched to injectable as I felt nauseous. I had/have virtually none of the things you mention using the injections. I hate to say this but up are likely to have a lot more pain once your RA had nothing to control it. Hope you can speak with your consultant very soon. Maybe they will suggest another drug entirely.

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Hi Everyone,

Update from my last post. After being diagnosed with RA in June and taking Methotrexate, Folic Acid & Voltarin for 3 months and not feeling any better, medicine not helping I was feeling so confused! Went to the doctor and told her I was not convinced that all of my symptoms were just RA. Because my legs burn, tingle and I’m so stiff from the waste down that I feel like something else is going on. She than said that she believes that RA is my primary and Fibromyalgia is secondary. Looking at my blood test and circling what significantly elevated, she asked are you still taking the Methotrexate, because you need to stop, because my liver counts were high. I told her, I stopped the month before I came back to her, because I was feeling so lousy. She than suggested Cymbalta, which I was hesitant but than decided to try it, because I just wanna feel good. After taking it for a week, I believe it’s helping with some of my pain in my legs.. do any of you take this?? I think it’s helping with the fibromyalgia. She won’t put me on anything for the RA now until December because of my liver.. any suggestions for another drug other than steroids for the RA??

Hope you are all feeling a little better... Hugs

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