Methotrexate 4 months on: Hi all So I have been taking... - NRAS

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Methotrexate 4 months on

Brychni profile image
19 Replies

Hi all

So I have been taking 5mg weekly since October. Some things seem to have got better but others are definitely worse.

My neck and upper spine, ribcage and sternum are off the scale, pain wise, and getting worse. Getting cold really triggers it and renders me totally incapable of doing anything but getting under a blanket.

Both elbows are bad and sometimes seem to be in concert with my shoulders.

Bothe knees now bad every day all day.

My insides seem to be better, I haven't had the diarrhoea / constipation / heartburn / nausea cycle lately.

The middle toe pain I had which was horrendous and coincided with similar pain in my right hand has now been replaced with both big toes; they are very painful and changing shape. The left one in particular looks like I'm getting a bunion which take years to form so I'm assuming it's the disease.

My wrists are on and off. Sometimes a creeping ache pops up and sometimes they look 'thicker', not swollen exactly. Overwhelmingly they are weak and even though I do lots of muscle strengthening exercises with a resist band, they seem to be getting worse.

My questions are, is it still too soon to be reporting any of this to rheumatology? Is everything I have described considered to be manageable? Is it normal to have flares while on MTX, or even some symptoms which can worsen? What should I expect if it is working?

I was diagnosed March last year and have been taking hydroxych. since then. Had a brief stint with sulfa. which made me feel really ill so I was then given the MTX. So far I haven't had any serious or bothersome side effects and I feel that it suits me very well - just don't know if it's doing anything!

Thanks in advance and belated Christmas wishes.

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Brychni profile image
Brychni
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19 Replies
Lolabridge profile image
Lolabridge

Hello Brychni. After 4 months I would have thought you should now see more improvement than that. I suggest you contact your Rheumy for advice. They may decide to tweak your dose.

Brychni profile image
Brychni in reply to Lolabridge

Thanks L - that was what I was hoping! I would be loathe to start another medication, especially as I don't have much in the way of side effects.

KittyJ profile image
KittyJ

Definitely speak to your rheumy. 5mg is a very low dose so there is probably the option of increasing it. What are your bloods like? Either way unless you tell them how you are then they will assume all is ok. Let us know how you get on 😊

Brychni profile image
Brychni in reply to KittyJ

Thanks Kitty - bloods always OK - no one ever phones to tell me otherwise - so I suppose they could put me on a higher dose.

Brychni profile image
Brychni in reply to KittyJ

sorry Kitty - just replied to my self - I'm taking 10 not 5 mg mtx. Is that still quite low?

KittyJ profile image
KittyJ in reply to Brychni

Yes it’s still a low dose, room for increasing and improving 😊

Brychni profile image
Brychni

SORRY: I'm taking 10mg MTX not 5 as I said above. 🙄 definite brain rot...

oldtimer profile image
oldtimer

10mg is still a low dose. You should definitely be contacting your medical team for advice on possible increase.

Brychni profile image
Brychni

Thanks all - on the blower now.

Blueskysunshine profile image
Blueskysunshine in reply to Brychni

Good - hope they respond quickly for you.

Boxerlady profile image
Boxerlady

It's a very low dose; I started on 15mg then increased to 20mg before ending up on 25mg Metoject (maximum dose.)They might have been taking it slow because of your previous tummy issues but by now you should definitely be seeing some improvements.

Creakywrists profile image
Creakywrists

Perhaps best not to do muscle exercises while your joints are inflamed. Better to rest them and maybe use wrist supports. You’ve had good advice about contacting rheumatology. I started on 15mg and put up to 20 quite quickly.

Brychni profile image
Brychni in reply to Creakywrists

Hi Creaky - I think the weakness is a result of muscle wasting, so it's something that's getting gradually worse and is constant. In fact my arms in general are pretty weak. Couldn't get off my exercise ball the other day!

I cant really add much more to whats been said but take care . I think when you find the right dose of MTX it will make you much better x

stbernhard profile image
stbernhard

Sorry you have all of this to deal with. I think it's definitely time to contact your care team. You are in need of further help. I hope you'll get it soon.

helixhelix profile image
helixhelix

10mg is the lowest therapeutic dose (ie a dose that actually does something). So if you are tolerating this then room to discuss increasing it with your medical team. Tell them about muscle weakness too tho’.

Ford_Prefect profile image
Ford_Prefect

I am a 70yr old male MTX not working for me, just started Imraldi Injections. Fingers crossed.........

Garnacha profile image
Garnacha

Hi I’ve been on etoricoxib 90mg since February (anti inflammatory) as well as hydroxychloroquine, I was then also put on methotrexate 15mg in November & to increase this to 20mg after 8 weeks, I’ve had a bad flare up so was also prescribed prednisolone for a week which helped slightly but the developed a severe burning sensation in my left arm which apparently is nerve pain so also taking 900mg a day of gabapentin, this takes the edge off the burning but I’m having to take cocodamol too. If your only taking 10mg along with hydroxychloroquine I’m sure the rheumatologist could increase the methotrexate. Hope you get some answers soon & feel better

4201 profile image
4201

I have been on Methotrexate now coming up on 2 years since my original diagnosis of Psoriatic Arthritis. My PsA has been under control and seems to be working although I always feel nauseous and out of sorts the day that I take it. I started with 7- 2.5mg. and now take 8 pills (total 20 mg). Your dosage is low compared to most. I have lately been more nauseous and fatigue in the last few weeks. Wondering if anyone has experienced that change with mtx too. I would recommend you stay on it for a while and advise your doc how you are feeling after another month or so. It worked like a miracle for me in the beginning. Good luck.

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