Do I have my 2nd MTX injection or not?: Didn’t sleep... - NRAS

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Do I have my 2nd MTX injection or not?

Haz58 profile image
28 Replies

Didn’t sleep last night, feel so yucky this morning. Tiredness had been bad the last couple of days and joint paineven though I had a steroid injection a week Friday. I feel sickly, headache, bit of a dry cough and so so tired. Just want to cry but what good will that do.

Im due my 2nd MTX injection today at 6pm. Of course it’s the weekend so can’t call the then rheumy nurse for advice. Do I do the injection do you think, I don’t know what to do. Who could I call to find out. Any help appreciated.

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Haz58 profile image
Haz58
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28 Replies
Mmrr profile image
Mmrr

I can't offer medical advice but a few questions might help you decide...Are your symptoms due to your 1st MTX injection or is this the way your RA effects you ? If it is your RA, MTX might take upwards of 12 weeks to kick in.

If all else fails NHS 111 might be able to offer (superficial) advice.

Haz58 profile image
Haz58 in reply toMmrr

Thank you MmrrI really don’t know if it’s the RA or MTX. After my last steroid injection within 4-5 days I felt good. This time it doesn’t seemed to have done anything and the only difference is I had the MTX jab the day after. I was very rough after the tablets of MTX. Perhaps I’ll just have to do the injection tonight and see what happens. As you say with 111 I think they’ll just say don’t do the injection and talk to my Rheumy. I usually end up ambulanced to a & e if I ring them 🤦‍♀️

Mmrr profile image
Mmrr in reply toHaz58

Sending you best wishes.

Madmusiclover profile image
Madmusiclover

Honey steroid injections stopped working for me too. As for the drugs it really is down to if you feel it’s the drugs or RA making you feel so poorly. And it is your choice. It really is.

nomoreheels profile image
nomoreheels

Can't advise on what is really a medical question. Except, can I ask, are these symptoms at all similar to when you started the tablets? That may be the answer you're looking for if they were. Also, I'm not telling you something you don't already know, but joint pain & fatigue, even feeling fluey can be a telling sign of disease activity. If you think back, in a similar way to before diagnosis & starting treatment, & your steroid injection doesn't appear to have worked it's starting to add up. How long since stopping your tablets & starting injecting? Asking because if I’m off MTX for 3 weeks & longer I have definite signs of missing it, joint pain & inflammation, fatigue, feeling bleurgh etc.

You're taking your folic acid aren't you? That's the only other thing which helps ease MTX symptoms, if that is what they are.

The only other thing you could try, & this relates to your not sleeping, try injecting at different times of the day. Even though it maybe doesn’t seem relative to all your symptoms it may make a difference & worth trying. Or, you're coming down with something. If you're still having symptoms over the weekend then call your Rheumy Nurse as you would have today if it had been possible. I do hope you feel better before then though. If your meds allow & if you have a temperature paracetamol might be worth trying, that is if you don't take co-codamol or any other regular med with paracetamol in it.

Not sure if any of this helps.

Haz58 profile image
Haz58 in reply tonomoreheels

I was supposed to start the tablets in September. Before being told I’d got RA I suffered from bad tiredness for about a year. At one point had 1mg a day of folic acid prescribed by doc fir 6 months as I was lacking after a blood test. Instarted the MTX, I had one dose 10mg then got a chest infection and couldn’t take them for 6 or 7 weeks. Then saw the nurse and my fingers were all swollen and painful so she gave me a steroid jab again. Was to restart the tablets and I had my flu jab, pneumonia jab, COVID vaccine number 3 and they told me not to take the MRX while I was getting all the vaccinations. Then I had a tooth problem so again no MTX. So I then started the MTX tablets again, had 1 x 10mg dose and had dreadful acid reflux, which intake omeprazole for anyway, I have had gastric reflux for years. So they said the tablets were no good for me and they started me on the injection last Saturday & was told to do it at 6pm. I woke the next day feeling like I’d drank a bottle of scotch, massive headache and a bit of a dry cough. On Monday I had a bit of acid and still a bit of a dry cough but wasn’t too bad but tired. I took my folic acid on Monday too., felt like I’d got a cold too, runny nose. Tuesday I felt more sickly and developed zig zag flashes in my eyes, ocular migraines I think they’re called. I had this twice in the day. Not had them for years. That night I didn’t sleep. Wednesday I still felt sickly, very tired, no energy. So I took another folic acid as they said to if I still felt sick. Thursday I wasn’t too bad in the morning but then at 4pm it was like a switch had been turned off. No energy whatsoever and very weak. Yesterday I was still weak and tired. Then today I feel like this. Maybe like you say I’ve got a bug, would be on par for me after a steroid jab 🤦‍♀️ I think I’ll leave the MTX tonight and see how I am tomorrow. If I feel better then I’ll do the jab. I want to give it a chance but there still so much medication my body doesn’t like over the years. I take co-drydamol for pain when I need it as I’m allergic to codiene. Sorry such a long post, trying to work out what it could be causing me to feel like this.

nomoreheels profile image
nomoreheels in reply toHaz58

Whoa, lots going on there which may or may not be associated! You really do need to discuss all of it with your Rheumy Nurse, see what conclusions she/he comes to & if there are options. What occurred to me though was you saying you felt like you'd drunk a bottle of scotch the day after. Some do report what's called an MTX hangover, if that sounds plausible? Usually only the one day after but still, it's another thing to contend with.

I hope you start to feel better over the weekend. Wrap up & keep cozy, it's rubbish outside.

Garnacha profile image
Garnacha in reply toHaz58

I'm on metoject 20mg plus hydroxy, lefluminode, etoricoxib & wake up every morning with a hangover feeling 7 days a week, I'm also so fatigued first thing which comes & goes throughout the day.

I was told to take 1 folic acid tablet 2 days after methotrexate, I've asked if I should take it more often & was told by the private consultant no, after a year I bought some supermarket ones which I understand aren't the same strength as prescription, I eventually saw an NHS rheumatologist end of January who said yes to taking extra folic & he'd ask my gp to add it, still waiting for that 🙄 so in the meantime continuing with shop bought ones.

I also feel sicky for 4 days after metoject & have cyclazine to help.

Sorry I can't advise any help just wanted you to know you're not alone, hope you feel better soon x

Cheylann profile image
Cheylann in reply toGarnacha

This kind of thing puts me off taking mtx. I mean what's the point of taking a drug that makes you so sick for so long?

Garnacha profile image
Garnacha in reply toCheylann

Sorry for late reply, I have my 2 Yr old granddaughter on a Monday so very hectic & knackering 🤣 I know what you mean, I've thought a few times is it worth it, but, in October I had to miss 2 doses as I was on antibiotics for a chest infection, could feel my joints getting worse & worse, had my next dose but the one after failed, I was in so much pain in my joints & couldn't believe how much methotrexate actually helps to control the disease, had to have steroids to help

Even though I hate having it, the alternative is so much worse.

Good luck with whatever you decide x

Cheylann profile image
Cheylann in reply toGarnacha

That is very encouraging. I've had 2 injections and a steroid and feel a lot better pain wise and in myself and all my stiffness has gone.I'm going to persevere with Mtx as so far no real side effects.

Madmusiclover profile image
Madmusiclover

Bless you. It’s tricky. Hope you feel a bit better soon.

oldtimer2 profile image
oldtimer2

What a dilemma. It's so difficult to know if your symptoms are from the methotrexate or the Rheumatoid Disease - or from something else altogether. Personally in your position, at a weekend with no expert input from Rheumatology, is to 'do nothing' as the the safest option. But I must emphasis this is my own personal opinion not an expert one! Things so often become clearer with time.. and on Monday you can ring for expert advice.

Haz58 profile image
Haz58 in reply tooldtimer2

Hi Oldtimer2

Thank you for your reply. That’s what I’ve decided to do. I’ll ring the nurse in the morning to see what she says. I bet she hates me as I’m so difficult with medication!

When I saw her last week she asked again what I was allergic to and I gave her the list and she said ‘not a lot then’ and laughed. 🤦‍♀️

Thingybob profile image
Thingybob

Its so hard to make decisions when you feel rough .You could delay your jab and phone the rheumy first thing tomorrow ? Then if they tell you to carry on as normal you will be a day late with it ? It just depends on whether you can get through to them tomorrow. Sending good wishes that you feel better soon .

Haz58 profile image
Haz58 in reply toThingybob

Thank you thingybob.They are very good I call them, leave a message and they usually call back within 2 hours. I didn’t inject last night and still feel quite off today too, tummy still churning and that sicky feeling, so not going to do it again until I’ve spoken to them.

Thingybob profile image
Thingybob in reply toHaz58

I felt rough on the mtx tabs and swapped to the jabs. It took a while for them to be effective. The dide effects decreased over time too. I still get side effects the day after my jab now ( 2yrs later) , nausea mostly. But take an anti sickness pill which helps . All the best 🙂

Haz58 profile image
Haz58 in reply toThingybob

Do you get the anti sickness tabs from the doctor or has the hospital prescribed them?

Thingybob profile image
Thingybob in reply toHaz58

The rheumy nurse prescribed them . I tried ondansetron to start with .... they cured the sickness but gave me a stonking headache. So then i was prescribed metoclopramide. I take one tablet 2 hours before my jab . There are lots of different ones i think. You could ask your rheumy team when you speak to them . Hope this helps :)

nomoreheels profile image
nomoreheels in reply toHaz58

My GP prescribed my antiemetic & I have it on my acute meds list as it's not needed all the time. I’ve found prochlorperazine works better than metoclopramide, which a Registrar wished me to try. I've also had cyclizine too.

Cheylann profile image
Cheylann in reply toHaz58

How are you? Did you manage to take your injection?Hope you are feeling better.

I've had no side effects from the 10mg Mtx injection.

Hope the nurses sorted you out.

Take care. Xx

Haz58 profile image
Haz58 in reply toCheylann

Hi Cheylann. Hubby did the injection on Sunday afternoon. I just decided to get him to do it as I felt a lot better then. Yesterday I was ok. Today I’ve got a bit of a fuzzy head but ive been wearing sea sickness wristbands so whether they are helping with the nausea I had last week I really don’t know but I thought worth a try. Took folic acid this morning as instructed. Not heard from nurse yet…which is unusual. If I get more affects as the days go on I’ll call them again but so far not too bad. I can cope.😊maybe I had a bug last week 🤷‍♀️ I’m glad you are getting on with it ok 😁. Take care too xx

Ps I’m having a few memory problems though I must say. Don’t know if to do with mtx or not.

Cheylann profile image
Cheylann in reply toHaz58

Pleased you decided to take it. If all you have is a fuzzy head, it's a small price to pay for potential relief from this awful illness.I had a fuzzy head for 2 days after first injection. Has an upset tummy on Sunday but that's all. By Monday I was feeling good but of course still quite a bit of pain. Seems those steroid injections don't work for me anymore.

Hoping with time the mtx works. I try not to think too much about how I'm feeling as the more I dwell on it the worse I feel. I've always just got on with things and although often in a lot of pain, this attitude has stood me in good stead. I feel a lot of things are in people's heads. They expect to get side effects so blame the drugs for everything.

Anyway, I'm sure it will settle down for you and wish you well.

Haz58 profile image
Haz58 in reply toCheylann

Thanks, you too Cheylann 😊 onwards and upwards 😊😊

Maggsie profile image
Maggsie

Have you had a covid test recently? The dry cough, headache and tiredness are all symptomatic of Omicron.

Haz58 profile image
Haz58 in reply toMaggsie

Yes I do one 2-3 times a week as I get my granddaughter from nursery.

Cheylann profile image
Cheylann

I would take it.I'm in pain as well and had a steroid on Tuesday. I'm also always tired. Unless you are ill with a temperature etc, it's best to take it.

Did you take it?

I hope you feel better.

Took mine and had bad tummy upset yesterday but that's all.

Haz58 profile image
Haz58 in reply toCheylann

Hi CheylannI felt a lot better yesterday afternoon, it was like all of a sudden the tummy ache etc had gone. So I did the injection after my dinner at 4.15. This morning I’m just a bit tired so far. Im Beginning to think I may have had a bug last week but who knows! Like I said to the nurse last week it’s so hard to know if it’s the RA, medication or something else making you feel poorly. M logging how I feel every day as I did last week so I can compare. Im hoping it was a bug as I really want the MTX to work with me. I thought ‘just do it’ see what happens. 😊 I’m a worrier by nature. 🤦‍♀️

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