Methotrexate : Hi all I have been taking methotrexate... - NRAS

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Methotrexate

Shoulders1 profile image
22 Replies

Hi all

I have been taking methotrexate for around 14 months . I dreaded the first time, but had no real side effects. Initial dose was 15mg , then after 3months was raised to 20mg. The last 6 months or so, I have felt really sick for the next day and a half.

Has anyone else had a delayed reaction ?

My pharmacist said it was the build up in my system. I think it’s a mental/anxiety thing as well , but it’s pretty horrendous.

Dread taking the weekly dose

Thanks

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Shoulders1
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22 Replies
nomoreheels profile image
nomoreheels

Hiya Shoulders1, welcome to the NRAS site. I have a similar problem, even though I’ve been taking MTX a long time. You Pharmacist may well be correct in your case & it’s build up though you have been taking it a fair time. For me it's simply my body doesn't cope with anything above 17.5mg though I’ve tried 20mg on a few occasions, first time when I changed from tablets to injections. This even though I take 5mg folic acid 6 days/wk. It's not anxiety with me as I'm content injecting MTX because it works for me, I don't dread Wednesdays, my MTX day, but that's not to say it may be for you. I do drink lots of water, especially MTX day, helps flush out the kidneys. Is there any reason you can think why it would make you anxious, aside from making you feel as it does? If so can you tackle it do you think, or talk about it? Is your Rheumy aware of how things are? If not do please let him/her know, otherwise things will continue & won't get any easier. It could be they'll do as mine do & just reduce the dose, see if you cope on that, 2.5mg makes all the difference for me.

Shoulders1 profile image
Shoulders1 in reply tonomoreheels

Thank you for your response My rheumatologist has lowered my dose to 15mg . They thought about about folic acid 6 days a week, but went for the lower dose . I am hoping this works .

nomoreheels profile image
nomoreheels in reply toShoulders1

Ah, didn't realise you'd already had a reduction in dose. So you're still feeling gruff? Though you say you hope this works so I guess it's recent. Not sure how else to help to be honest, just a case of time will tell I suppose. If all else fails I guess your Rheumy will increase your folic acid, it's what usually helps as it replenishes the folate the MTX nicks off with. Being an anti folate it's probably what's causing the gruff feeling, lack of folate stores. My last Rheumy prescribed 6 days/wk from the get go, save her patients side effects & most often that helps with remaining on it for as long as it helps.

There is also the option of changing to injections as springcross mentions, the only DMARD you can do that with. Generally nowadays they're a pen, no nonsense & easy for most to do if you have strength in your fingers. I do prefer the prefilled injections but only because I have stupid fingers. As the liquid goes straight into the blood stream it avoids the tum & the nausea etc that goes with that. So maybe that's something your Rheumy will consider if things don't change with the reduction, or it's not enough to keep things controlled. They do prefer you to try tablets first but as you've been on MTX 14 months I think you have given it long enough to be considered for them. If you do consider injecting it might be worth asking that you don't have too high a dose. That happened to me, from 15mg tablets straight on to 20mg injections & it was too much. This is because there's greater bioavailability when injected.

Will you pop back on & let us know how you’re doing?

Shoulders1 profile image
Shoulders1 in reply tonomoreheels

I will do thank you for replying

springcross profile image
springcross

Hi Shoulders. I assume you take the tablets as opposed to injecting with the Metoject pen. If this is the case, you could try asking your Rheumatologist if you could change to injections (which are very easy and painless) explaining why - this would ease a lot of your nausea and hopefully because of that, would probably ease your anxiety considerably too. Also, are you taking Folic Acid tablets six days a week except on Methotrexate day? If not, that would also help. Have a think about it and maybe as I said, have a word with your Rheumatologist. Good luck. x

Shoulders1 profile image
Shoulders1 in reply tospringcross

My rheumatologist has lowered my dose (tablets)to 15mg. They thought about folic acid x6 days , but lowered the dose . Injections will be my next step . I was just wondering if others had a delayed reaction . I’m guessing it’s the stronger dose, that has built upThanks

springcross profile image
springcross in reply toShoulders1

I hope it settles for you Shoulders. Good luck. x

Shoulders1 profile image
Shoulders1 in reply tospringcross

Thank you

helixhelix profile image
helixhelix

I had a delayed reaction on terms of getting mouth ulcers after 2 years....but not dose. Although I never managed to tolerate more that 17.5mg tablets.

Yes this happened to me. I was on oral MTX for 2 years then started injections. After 7 months suddenly found my Hanover was getting longer and after 8 months found I was hungover for 6 out of 7 days and once slept 36 hours solid. Had a six week break restarted on a lower dose then increased to 15 mg . 8 months on the hangover is creeping back and is lasting 3 days.

Shoulders1 profile image
Shoulders1 in reply to

Not nice Thanks for your help

I wish it wasn’t the case but others also seem to get delayed reactions . Everyone is so concerned with initial period .

Gottaloveastaffy profile image
Gottaloveastaffy in reply to

I always feel extra tired and want to sleep forever 🤪 but then I feel sooo tired all the time 😩 does this tiredness ever go away 🤞

in reply toGottaloveastaffy

This is my worst symptom of RA . It’s a sign your disease is active. I’ve just started baricitnib which is a drug that can help with fatigue. I am better and am slow doing more things . It’s not pre RA and I don’t think it ever will but I’m hoping if I don’t push too much and take things slowly it will continue to improve. Fatigue was my very first symptom probably 20 or more years ago then it was my feet about 17 years ago. Gp tried to treat it as depression.. another story.. keep telling your team about fatigue I never let it go as it’s so debilitating . Often think it’s dismissed.

lily777 profile image
lily777

Hi...I began mtx orally with dose stepped up fairly swiftly and changed to injections thereafter reducing dose until now, several years later on maintenance dose of 7.5. I used to dread mtx day...being so averse to meds of any kind. One thing that helped was setting aside time for a pamper session in the bathroom.. candles the lot! Just shifting focus and including the meds in a wellness time really helped overcome my anxieties.Sending best wishes

Bookworm55 profile image
Bookworm55

Yes my reaction to mtx started after about 6 months and I reduced my dose down to 12.5mg from 20mg. I also take 6 days of folic acid a week. I can tolerate the 12.5 mtx but still have to make sure I drink 2 large glasses of water with the tablets. If I don’t I still get what I call the ‘yuk’ feeling for a day or so.

Shoulders1 profile image
Shoulders1 in reply toBookworm55

Similar to me thenI have actually started wearing the travel sickness bans . Helps me work the next day

Thanks

fred42 profile image
fred42

I too have problems taking MTX which is so irritating as it really works and reduces the swelling and stiffness in my fingers. Restarted 10mg MTX injected with folic acid on the other 6 days alongside my Cymzia.

It was absolutely brilliant for 3 months then the nausea, stomach problems kicked in again, sounds the same as you

Tried reducing the MTX to 7.5 but no better, why after 3 months?

I cannot tolerate this so have to put up with stiff sore fingers

Let us know how you get on and good luck

5

Shoulders1 profile image
Shoulders1 in reply tofred42

Will do thank you It works really well for me as well . I have almost no pain, but dread taking the tablets . My right hand was so bad before, I struggled to open the fridge . It’s the lesser of two evils

Jollygoodglyn profile image
Jollygoodglyn

I have had a similar experience (albeit only on 12.5mg) and resolved it by changing brands. Despite the assertion that all methotrexate tablets are the same, I find the larger tablets make me nauseous-I’m assuming there is something other than methotrexate that makes the size vary. There are pinhead size tablets that I now insist on, (I once visited 5 pharmacies until I could find them). They make me feel as if I’m on a placebo and that RA is all in the mind. (I know it’s not). I can go on, about attempts to reduce the dosage and onset of frozen shoulder the following week, but that’s another story). Just a few thoughts. G

Shoulders1 profile image
Shoulders1

Thank you My pharmacist mentioned brand tolerance .

Didn’t seem to make a difference . My doctor said there may be food interactions as well. Some Mondays are more bearable .

marie66 profile image
marie66 in reply toShoulders1

Dairy definately adversely affects me too! M x

marie66 profile image
marie66

Hi I've been on methotrexate for 5 years now. I reduced my dose back to 15 and switched to metoject pens, which did help but I needed to add an anti nausea pill day of and day after injections - it's now manageable. If it didn't stop all the swelling in my wrists and hands I'd have wanted to switch to something else but as things are, I don't want to risk all the old issues returning with a vengeance so it's a case of better the devil you know! M x

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