methotrexate delayed side effects?

[Brychni]

So - if it can take weeks even months for medications like mtx to take effect, is it the same with their potential side effects?

I have developed mouth ulcers, nausea (threw up just now) light headedness and sweats especially just before having a TOO MUCH INFO ALERT: bm.

Will be taking my 5th dose day after tomorrow and thought it was plain sailing but I actually feel really, really crap and I seem to be having a flare. More double sided than usual. Knuckles are red and getting more knobbly by the, elbows worse than ever and of course the new member of the party: top of my back.

GP says everything must be OK though because my CRP level was normal!

[helixhelix]

It can go in waves as your body gets accustomed to it. I only started getting mouth ulcers after 2 years....

[Rolo85]

Oh my goodness, I’m sorry to hear you feel so rubbish and I can’t really offer a huge amount of advice but I’ve just taken my 5th dose of Mtx and I was having a few side effects and niggles but I was coping and thinking bigger picture! But the sickness and nausea over the last week has been too much to tolerate! What dosage do you take?

I haven’t really discussed it with anyone yet because I thought I just had to get on with it until my next appt with Rheumatologist but you’re not on your own.

I hope you feel better soon

[Brychni in reply to Rolo85]

Hi Rolo - sounds like you're in the same place as me! miserable isn't it? I take 4 tablets, 10mg I think every week. Doesn't sound like much.

I had my first couple of days not being able to get out of my pyjamas and my daughter coming home from school to her mother on the sofa.

[Rolo85 in reply to Brychni]

Hi there! I hope you are feeling a little brighter?

Listen, any amount of tablets is enough when they make you feel rotten and combined with all the other tablets we take...I feel like I rattle when I walk 🙈😂. Honestly feel like I’m in limbo with it all, taking the tablets but too soon to have kicked in to help the bigger picture but soon enough to get all the miserable side effects! I’m trying to be positive but I have good, bad days and quite frankly downright awful days!

I’m still suffering with that overwhelming “ick” feeling and few other things but hoping my appt next week might shed some light on what’s happening and way forward 🤞🏼 I’ll take progress not perfection 🤷‍♀️...

Take care of yourself, I hope you start to reap the benefits of the medication much sooner rather than later 🙂🙃 x

[LinaM]

You know my thoughts on this .... I found I had a really. bad flare on week 3 and then again on week 5 after they increased the dose . Sorry to hear you’re suffering and hope it settles soon xx

[Marionfromhappydays]

Sorry to hear you are having these issues, I did get mouth ulcers (with the injections) but that was around the time it started to work for me so that was a big upside.

You taking the folic acid ?

[Brychni in reply to Marionfromhappydays]

Hi M, yes I take the MTX on Thursday and the folic acid on the Saturday. the ulcers are horrible - they're not as painful as some I've had (non medication induced) but they're massive.

[charisma]

Sorry you’re having quite a few problems with MTX just now. I found that the longer I was taking it, the less it controlled the RA in spite of blood seeming fine for CRP etc. I suffered long months with so called MTX induced ‘remission.’

And side effects not present in early days began too eg weepy, SAD in autumn and winter.

So if your symptoms persist and are not associated with any common illness, please do be firmly, calmly assertive about the misery. x

[Hidden in reply to charisma]

Hello Charisma,

I'm puzzled by you saying you "suffered" remission. Isn't remission a good thing, what we all want in fact?

[charisma in reply to Hidden]

Hi Bacharia

I said suffered when in supposed drug induced remission ie blood fine but joints all disagreed.

Frequent for me with MTX. 🙂

[Brychni in reply to charisma]

I did point out to the GP that I have never had raised CRP and that my diagnosis was made with ultrasound Doppler. I reminded him that when I asked for more blood tests I was told there was no point. So telling me it was 'good news' that my CRP were low was meaningless. He was very sympathetic but that was it.

[vonniesims]

Sorry to hear this. Hope you are on Folic acid. I take one every day except Methotrexate day. I does help with side effects.x

[Brychni in reply to vonniesims]

I take once a week 2 days after mtx - is it OK to take more?

[vonniesims in reply to Brychni]

We take it to help reduce side effects. We seem to be on different doses across the forum, so you probably need to speak to your specialist about increasing it....Although your GP might do it.

Good Luck

[Brychni in reply to vonniesims]

OK thanks. x

[nomoreheels in reply to Brychni]

It sounds as though you do need an increase in folic acid Brychni. The thing is you need to consult your Rheumy Nurse to get it ok'd (which shouldn't be an issue given your side effects/symptoms) as your script will need to be changed. Thing is you probably won't have enough on your current script to last you the month & you can't buy 5mg otc. Nowadays I'm prescribed it every day except MTX day, you'll have noticed lots of us on MTX are, but when I first started tablets I was only taking it the day after, the day before was added when I had some hair thinning.

When I was on tablets my Consultant recommended my 15mg was taken with meals, 5mg with breakfast, lunch & evening meal. I only had nausea in the first few weeks & apparently splitting the dose throughout the day means you gain more from the dose, apparently 28% more bioavailability (similar to injecting).

[Brychni in reply to nomoreheels]

I had no idea - I'm going to call them now. Tell them about my back too, although it seems that every twinge is now attributable to RD. took my dose yesterday but as I am typing I have started to feel sick and headachy, just had lunch to line my stomach for hydroxy. It's all very weird: I know it's good to eat when taking the tablets but I just feel sick now. uurrggh 🤢

[Cal48]

Do you take your dose late evening with toast and a cup of tea? This helps me with the nausea .Your Pharmacy should be able to give you something for nausea and the mouth ulcers which are common problem for us. Good luck .

[Brychni in reply to Cal48]

usually with lunch and a croissant!

[Cal48 in reply to Brychni]

Maybe try them for supper! Good luck!

[Hidden]

I can go months without any problems and every now and then a side effect pops up .. fatigue or nausea. I do get sweats when I need a wee especially at night 🤷🏽‍♀️. Sore joints etc is disease still active 🥺my CRP etc are normal too still get all the above

[Brychni in reply to Hidden]

just like me!

[Hidden]

It can take a good three months for MTX to do its stuff. I'd guess that after only five weeks your symptoms are caused by the RA rather than the MTX. Have you told your rheumatology department about the ulcers?

[Brychni in reply to Hidden]

not yet, my main concern is the severe pain in my spine. I'm worried about permanent damage and I can't see which department is going to investigate. The GP just says everything is to do with RA, the websites say RA doesn't attack the spine, rheumatology just say keep taking the tablets.

I have, in desperation booked an appointment with a local Spine clinic. The pain is now my worst. I feel like my ribcage has no flexibility and deep breaths are hard.

[Hidden in reply to Brychni]

I feel so sorry for you suffering like this. Probably rheumatology are right to say you should keep taking the tablets, but they should also give you something right now to deal with your pain. Many of us us have been given Prednisolone to tide us over until the MTX gets going. Maybe you could ask about that. For what it's worth, it worked wonders for me in a very short time. I went from not being able to get up from a chair to running a meeting of 50 people - I walked there too! You need patience when getting off Pred., but lots of people manage it. I've not taken it for 11 months now.

I do hope you will get some relief quickly. You should not be left in severe pain.

[charisma in reply to Brychni]

That sounds like it’s the thoracic spine... hope you get some help to resolve this or relieve pain.

I had lots of thoracic back pain with RA, still can set it off by eg sitting on a bench, no back support. Or sitting on a stationary exercise bike, with hands on the handlebars. Got to sit myself up completely straight or expect ‘kickback’ of pain. Nasty.

It does seem that if your pain is not in hands, it is ignored at Rheumatology appointments unless we write to them or present them with written notes to be added to our record.

Good luck finding appropriate help with the misery.

[Boxerlady]

Nausia, vomiting, light-headedness and sweats followed by bm can be caused by many things; I've had that "collection" of lovely symptoms caused by bugs, food poisoning, IBS and even good old anxiety over the years. Sadly, they often go together. The mouth ulcers may be a separate issue - either being run down or caused by the Methotrexate.

Obviously I'm not a doctor so can't say that Methotrexate isn't the culprit but just saying that it might not be; can you ring your clinic for advice?

[Boxerlady]

How's things, Brychni?

Hope you're feeling better 💐

[Brychni in reply to Boxerlady]

thanks Boxerlady - right at this moment sat on my bed wearing my eyeballs out looking at the vote counts in the US election! Spine and ribcage on fire and stiff. Felt sick again yesterday. I've noticed it happens roughly the same time, before supper. I often feel quite hungry and then slowly from about 3pm I strt to feel off, and by the time I'm sat in front of my plate I'm absolutely not hungry and the smell of garlic (my husband is Italian!) makes me heave. The ginger boiled sweets are great and usually one settles it.

[Amy_Lee]

I started with Mtx. It took about 6 months to start working on me. During the 6 months, my condition got worse and I had muscle wastage. I was sent to the occupational therapist and physiotherapist to train my fingers, my hands and to build my muscles. I was left with 38 kg the last I weighted then. Basically I was left with skin on bones.

I developed a lot of side effects immediately but just of them were gone after about a year. Nausea and vomiting were also gone when Mtx dosage was reduced to 7.5 mg.

I have been in remission after about a year and a half treatment and I am now with 7.5 mg Mtx and 10 mg leflunomide.

Hope the above information is helpful.

[Brychni in reply to Amy_Lee]

Hi - thanks for the info. Yes, I have been told I have some muscle wastage and I have also lost weight which doesn't help when there's no padding in the joints! Did you manage to get your weight back up?

[Amy_Lee in reply to Brychni]

Yes, I did put back my weight slowly. Now I am a bit more than what I expected. I used to be 54 kg before RA, 38 kg last I weighted during muscle wastage. Now I am 56 kg. For my height, I should maintain 53 - 54 kg. I will try to reduce a bit.

Do give sometimes to your medicine to kick in. During this time, my own experience, you may get worse first until mtx kick in. Just prepare for it and do not get panic.

I used to come in very regularly in the past, I notice a lot of experience people to help out here so I have been away for a long time until yesterday. I came in yesterday just to share my exercise hoping to send some positive wave in the group. I used to do that after my RA was in control. You can go to my profile to read up some if you want to know more of my progress.

[Brychni in reply to Amy_Lee]

My weight loss seems to have stabilised - mind you it changes by the week. It has levelled off at 110lbs which is an improvement from 108lbs.

[Amy_Lee in reply to Brychni]

Good to know that. Let us try to maintain the healthy weight!

[Brychni]

Thank you Amy_Lee