new to methotrexate: will my MTX fatigue fade or continue?

[benhemp]

I'm just a beginner here, having received an RA diagnosis in December on the basis of blood tests (I have no joint pain or problems, but my blood markers agree with the RA diagnosis; elevated RA and anti-CCP). I also have three other diagnoses: PSA (psoriatic arthritis), PMR (polymyalgia rheumatica), and fibromyalgia. My PMR pain and stiffness have largely gone away by my adopting a carnivore diet, so I am glad for that.

I have only been on MTX for three weeks now, having started my prescription after the holidays on the advice of my rheumatologist. She reasons that MTX should (may) help both the RA and the PSA. I am taking 25 mg a week (12.5 mg in the morning, 12.5 mg in evening).

I've chosen to take the MTX on Thursdays, as Thursdays and Fridays are a bit less demanding for me. In the past three weeks, I have had two mouth sores (now healed; I hope I have no more of those!), and I experience significant fatigue from Thursday afternoon until Saturday morning. I attribute this fatigue to the MTX , and I'm hoping this fatigue problem goes away over time as my body adjusts. Is this likely? Or is this the new normal? I see that from other threads that, at least for some people, the fatigue is an ongoing problem.

I welcome any and all sharing of others experience and advice. Call me "new to MTX".

[HeadInASpin]

Welcome, I’m no expert as quite new myself but it sounds like a high dose to start with. (More experienced members may be able to say whether that’s usual or not) My rheumatologist increased my dose over a period of time to help my body get used to it. Do you also take folic acid on the other six days? I had the ‘hangover’ feeling at first but that was helped by the folic acid so now not so bad. It’s also important to drink plenty of water.

If you’re not taking the folic acid or the side effects do not settle I suggest you get back in touch with your rheumatology department for further advice. Good luck x

[benhemp in reply to HeadInASpin]

Yes, I am taking folic acid on the other six days. My GP also told me that 25 mg was on the high side . . . I may ask the rheumy why so high . . . she must have her reasons, I suppose.

[Gottarelax]

I get fatigue with RA and fatigue with MTX. I don't know which is worse. When I recently took a few weeks off MTX to workout whether some other symptoms were side effects, I felt absolutely great and so much more clear headed for a week after my missed dose and then the RA flared and I felt rotten again. Winter definitely is worse too. The warmer, longer days give me more energy.

[medway-lady]

I’m sure that 3 weeks is not enough time for the MTX to work as it normally takes 10to 12 weeks. I don’t know about the USA but here in the UK a rheumatologist is unlikely to add an expensive biologic to it before looking at alternatives. The NHS doesn’t even look at a biologic without trying the alternatives to MTX if an alternative is needed. It’s not an add on situation but a try and see. Obviously it may be different where you are but I’d suggest you need to allow more time. I assume you’ve had blood tests for your CRP etc so it might be case of waiting for the next lot to inform any decision about medications. I’m sorry but with RA it is vital to be patient, MTX didn’t suit me, then it was Lefludamide and now Azathyoprine and Etanercept but that’s over years. It might help to keep a diary for your next appointment and then you wont forget anything. Lefludamide was great and the Aza works well too, but not as good as LEF so the biologic was added in. Please don’t go for the strong stuff without trying the range of DMRDs as you've not got by the sound of it, too many symptoms so no point in taking a sledgehammer to crack the nut. Look up the NRAS website for information on all the medications available you’ll probably never need all but it does show how many there are. Best of luck.

[benhemp in reply to medway-lady]

Thanks for the advice not to jump quickly to the strong stuff. My CRP and SED are normal; only elevated blood markers are RF, anti-CCP, and Sjogrens. Despite my symptoms not matching RA, my blood markers do; my symptoms match PSA (psoriatic arthritis). I'm neither fish nor fowl . . .

[greynot]

I was started on 10mg MTX weekly and gradually went up to 20mg over 2 months(I was simultaneously on steroids tapering in the opposite direction, during that time, to 'hit the RA hard'). Us folic acid on the other 6 days of the week.

I remain on 20my MTX 4 years later, my RA is wonderfully controlled 🤞. The fatigue and hangover feeling after taking MTX was not fun in the early days, but it became minor after a few months and now I rarely notice.

I'm one of the lucky ones in so many y ways.

[runningbracken]

I've been taking MTX since diagnosis back in 2017 first orally for about 2 years and then by injection. At first the fatigue was awful but after a year or so seemed to get less noticable. I still flared alot for years until they added Lefludamide early 2023. i now feel the RA is almost under control.

As mentioned above give it a couple of months. It does take a while before your body gets use to the drug.

Goodluck

[RainbowLeopard]

I suffered from a period of fatigue the day after I took mtx when I started taking it. It got to thr stage where I couldn't stay awake. My folic acid was upped to 6 days per week and I started taking iron supplements too, and it's settled down now.

[Hidden]

I take mine on a thursday And get more fatuige on the Friday and sat then eases of a bit

I do take supplements as well as the folic acid

[stbernhard]

Hi benhemp, we all react differently to MTX. Mostly it will take a few weeks to take effect and the body to get used to it. As your new to this, I highly recommend that you spare some time and look at the NRAS website. There you'll find lots of good reliable information on all aspects of living with RA. I understand you may be frightened and confused, I think most of us were at the start. All the very best for you.

[Sebastian247]

Hi. Sorry to hear you're not feeling too well. I'm also on MTX. I started on 15mg, I'm sure the rheumatologist said this was a normal starting dose. It made me feel ill immediately, nauseous, washed out, fatigued.

Over time the RA symptoms reduced a bit, however the side effects continued. Eventually the MTX was increased to 20mg which stopped the RA symptoms.

Unfortunately the side effects became intolerable and I asked to increase folic acid from one day a week to 6 days a week. That very quickly stopped the side effects most of the time and I felt much better.

Now feeling fatigued and washed out is an occasional occurrence and I feel OK most of the time.

Hope this is helpful. Seb.