New to RA: I was recently diagnosed with RA in October... - NRAS

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KT888 profile image
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I was recently diagnosed with RA in October and started on Methotrexate. I was a bit hesitant at first, but read a post some where that motivated me. Would you rather not walk, or be sick and could walk? I chose the walking path of course. I started on 10mg weekly for 1 month, then increased to 15mg. I didn't start getting some relief until the 3rd month, and was doing okay for another 2 months. Since I was controlled and doing fine, doc had me stay on 15mg. Pain started on my feet and had not travelled beyond that until recently. The pain on my feet is still there but its tolerable, it doesn't stop me from doing my daily routines. Lately it has traveled to my knees, same pain level as my feet. It stings and aches, but not very painful. I would categorize more as being annoying. My concern is, is this normal? I thought I was controlled, but it keeps traveling to all my joints. I read that methotrexate only slows the progression, so I thought it had slowed down where it's only active in me feet. Now its spreading like wildfire. Could it be that I need to increase my dose, or is this what we all go through from time to time? Please help me understand this disease.

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KT888
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11 Replies
helixhelix profile image
helixhelix

As you probably know by now this disease affects everyone a bit differently! So best to look at your blood tests and talk to your doctors to get a complete picture of where you are. It could be a passing flare, or it could show the disease getting out of control again. Difficult for us to tell.....

But anyway, my experience may be of interest to you. Like you I started with MTX, slowly increasing doses, and things improved. But after a few months the disease 'broke through' again - that's my description to the docs. And my blood tests showed a slight rise. So hydroxy was added in, and disease calmed down again. A few months later the same thing happened and Sulpha was added in. That finally controlled things and I went into medicaally controlled remisssion for about 5 years.

rab1874 profile image
rab1874

I think helixelix maybe right you maybe need something else added in to the mix but I would get in touch with your rheumy team as they know best xxx

Hobbits profile image
Hobbits

A lot of times they add a second and even a third drug to control this disease. It is very scary at first but if you are suffering, the relief outweighs the negatives if you can get your life back in some way.

I’m sure no one wants to be taking these drugs, but they can be a lifesaver to many.

Bojedo profile image
Bojedo

I started on MTX a month later than you (PsA), so I think I am following in your footsteps. I too think it slowly improved, but for me the rise and “break through” might’ve coincided with stopping oral prednisone, too. I saw my rheumatologist recently, and we are working on getting approved for cemzia. I am allergic to sulfa. The onslaught of this PsA happened soon after I retired, and my entire dream of retirement has turned into a... oops I feel a pity party starting.

What I want to say to KT888: I share the same uncertainties as you. Let’s strive to get more than just MTX to solve this. Let’s hope for days of fewer symptoms and more accomplishments of our lifetime goals. The posts above sound so positive, and there is a flicker of the thought of remission on top of it all (thanks helixhelix!).

KT888 profile image
KT888

Thanks guys! This is very comforting. I just messaged my rheumy, waiting for him to call me 😬. I just thought as soon as I'm controlled that everthing would be okay. This road is definitely bumpy, and I'm glad that I'm not alone. Nervous and anxious.

sjhewitt42 profile image
sjhewitt42 in reply to KT888

Hope you get sorted. It’s all very much trial and error as to which drugs work for who. Use this forum for support and experience and let u know how you get on. Methotrexate is mostly used for combined therapy with other drugs. Sarah xx

Gnarli profile image
Gnarli in reply to KT888

You're never alone here, KT888. I expect that there are many of us who have the same or similar problems and will have experiences to share. We are lucky in that there are so many treatments available to us that simply didn't exist not so long ago. Chin up, sweetheart, we're with you

ilovemyhubby profile image
ilovemyhubby

Have you tried CBD oils? It’s magical!

Paulineg profile image
Paulineg

Hi KT888

Like you I started on methotrexate and hoped that would control my R.A. Unfortunately this disease does not seem to stay still. My consultant decided I then needed to add hydroxychloroquine to my meds. That worked great for a time, then unfortunately the R.A decided to get worse and sulfasalazine was added to the cocktail of drugs I am taking. I really wish I could give you hope that your R.A. stays in control but this disease is awful and seems to have a mind of its own. Hopefully, because you seem to be a very positive person, you will stay as you are and do not get any worse but as my consultant says this rotten disease is progressive.

I wish you all the best and can only say ‘stay strong’ and take care.

KT888 profile image
KT888

Hi Guys, just an update. Rheumy got back to me and told me to increase my dose to 20mg. I'm not too fond of increasing as I know increasing my dose would increase my side effects. I did some research and took a shot at accupunture. In just 2 days pain went down 50%. If this keeps up I don't plan on increasing. I don't like going against doctors orders, but sometimes he gives me the vibe that western medicine is the only way to go. He has never mentioned how eating right and exercise would help. I think I learn more from this forum, than from my rheumy alone. I know that sounds really bad, but I'm gratful to have you guys and this forum. Everyone has been very helpful and supportive. I find myself saying "it will be okay" to "I can do this", as I'm reading through the messages. No joke! You guys are amazing!

Simba1992 profile image
Simba1992 in reply to KT888

New research has shown that low dose Mtx with low dose Doxycycline is more effective and less toxic than Mtx with other DMRDs. Also combining low dose Mtx with low dose pred has sown to be effective in decreasing progression and inflammation.You could take this up with your doc. I can give you the links to studies if you want. As you I find it essential to use existing meds in a way that minimizes their adverse effects.You might even be interested to read what this well known rheumy writis about Mtx dosing and efficacy.

rheumnow.com/content/dsb-ma...

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