Newly diagnosed : Hi was diagnosed 5 weeks ago, I’m on... - NRAS

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GrandmaAngie profile image
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Hi was diagnosed 5 weeks ago, I’m on 90mg of Methotrexate for 6 weeks. The last days i gave felt like I have the flu, achy joints and fatigue is this normal for RA? Thank you

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GrandmaAngie profile image
GrandmaAngie
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13 Replies
nomoreheels profile image
nomoreheels

Hiya Baby-Lily, welcome though sorry that you have been diagnosed to be here. Well, your MTX dose, we don't go that high when used as we need it, as a DMARD, just check what the directions are on your box & let us know. It's generally around 10 or 15mg weekly, though can be as high as 25 or 30mg, although less usual as initial once weekly doses.

I'm afraid your symptoms can be common in the newly diagnosed when you've not yet responded to your DMARD, whichever you're prescribed they all take around 12 weeks to reach their potential, sometimes a little longer though subtle improvements can be noticed earlier. Flu-like symptoms are often noted when not well controlled too, but this explains a little more of what you could expect to feel like just now nras.org.uk/what-is-ra-article

There’s no quick answer or remedy I'm afraid, apart from resting as much as you are able given that life & work goes on, keep taking the MTX & hopefully you'll start to notice your symptoms become easier, but rest assured we've pretty much all felt just as you are now in the early days & those following diagnosis.

Stick around, ask questions, reach for empathy if you feel you need it to feel less alone in this... you'll get it. 😊

KittyJ profile image
KittyJ

Welcome Baby-Lily I’m sorry you had to join us but this is a friendly place full of people who have been where you are and can give you support and our experiences. Feel free to ask anything you like/tell us your experiences.

That seems a big dose of methotrexate to start off on but I’m not medically qualified so maybe it’s not. The journey to find meds that work for you can take time sometimes and they do take a while to start working so come here for support whilst you’re waiting, there’s lots of interesting posts as we all have a different journey x

AgedCrone profile image
AgedCrone

Are you sure you are really taking 90mg Mtx every week?

That would be 36 x 2.5mg tablets every week! I have never heard of such a huge dose for RA.

However much you are taking,,,,,sadly the symptoms you describe are unfortunately just how RA can make you feel. Are you taking any Folic Acid?

I’d have a word with you rheumy nurse if you carry on feeling so poorly

...definitely check what dose you should be taking....& if you haven’t been prescribed Folic Acid...do ask about it.

Hope your drugs start to work soon...but Mtx can take around 12 weeks to kick in, so don’t get too worried if it doesn’t start working any sooner.

Brushwork profile image
Brushwork

Sad to welcome you Baby-Lily. This a very good, supportive forum though.

That is an unusually high dose of Methotrexate. I would check with your GP.

charisma profile image
charisma

Welcome, BL

Sorry you have RA. Is that a typo re 90mg MTX? The highest safe weekly dose is usually 20mg.

drugs.com/dosage/methotrexa...

It is absolutely normal to feel like you have flu when RA is uncontrolled. It usually is around three months to feel the benefits of any DMARD.

Take care of yourself.

stbernhard profile image
stbernhard

Hi Lily, It's a great shock to the system in the early stages of having RA. The MTX may take a little longer to kick in. In the meantime I'd advise you to learn as much as you can about RA. Please do not use Dr.Google or Dr. Edge. The NRAS website has probably all the information you'd ever want including fatigue, medication, exercise, self management and loads more. They also have a superb help line and one to one phone sessions with people who live with RA. I hope your DMARDS kick in soon and you get relief from pain and fatigue.

Hello Baby-Lily,

I'm very surprised at your dose of MTX. My consultant told me the maximum dose they use for RA is 25 mg per week, but cancer patients take much higher doses and they certainly get nasty side-effects. Many people can tolerate the dosage used in RA without much bother. I think I would politely ask the consultant why you are on such a high dose. There may be a very good reason.

I hope your condition improves soon, but bear in mind, as others have said, that MTX can take 3 to 6 months to get working. Are you also taking Prednisolone? It's very good in the short-term while you're waiting for the MTX to get going.

AgedCrone profile image
AgedCrone

Baby-Lily .. I have just got to say this please let us all know you are not taking 90 mg of methotrexate per week !

Or did you mean you are taking 15mg per week for 6 weeks?

That would sound more likely! 🥵

GrandmaAngie profile image
GrandmaAngie

Yes sorry 90mg over 6 weeks 😱

KittyJ profile image
KittyJ in reply to GrandmaAngie

Phew thank goodness for that 😊

Nain68cariad profile image
Nain68cariad

Is it 90mg over 6weeks? That is 15mg per week which sounds right.

Margo63 profile image
Margo63

I couldn’t tolerate Methotrexate! It made me feel like I had the flu! I was miserable! My doctor switched me to Leflunomide. That has been fine!

Gladjake profile image
Gladjake

Hi Baby-Lily

I agree with the other replies the dose does seem rather high. And I would get this checked.

I have the injections weekly started off at 20mg 6 years ago am now down to 12.5.

It does take a while to kick in but once it does I have found it to be a very good drug.

I get a bit sluggish the day after I take it and slight nausea other than that it is fine and my RaA touch wood is under control. I agree with nomoreheels that the flu like symptoms could be because your RA isn’t yet under control.

Good luck

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