Methotrexate tablets and side effects?

[Niao]

Am only on my 5th week of MTX tablets. I have been noticing that, in addition to the general feeling of yuckiness after taking them, I am now also feeling quite rough from the 2nd day after taking through to usually the 5th, with a general ‘cold like’ feeling with a mild burning throat and nose.

I'm guessing this is just a side effect and nothing to worry about, as it does seem to happen each time but eases up again, but thought I'd ask if others get this too?

I, stupidly, forgot to ask at my appointment last week even though I'd written down a list of things to ask! I did mention it to the nurse who takes the blood test and she didn't seem concerned, but said you must call immediately if you get any infection, especially a sore throat, and to stop the MTX.

Being new to it all, I am just not sure when or if to think something is worth mentioning to the Gp and don't want to turn into, or be thought of as, a hypochondriac!

[crashdoll]

Hi Niao. You should always approach your doctor if you have any questions or worries, don’t let it fester. Personally, I feel extra fatigued and weak the day after MTX and a bit more fatigued than usual the following day. What time of day do you take the tablets? I inject at night to help me sleep off the initial side effects which definitely helps.

[Niao in reply to crashdoll]

Thank you.

I take mine first thing in the morning. I was so happy not to have had any nausea, which was my main concern, that I've just been accepting the rest of it! Did ask the nurse but as I said she didn't seem concerned. I'm just not too sure what constitutes a sore throat in their eyes?

[Amy_Lee]

I had most of the side effects but not anything like what you mentioned here. Most of the side effects were gone after about a year of Mtx. Nauseas, vomiting and cool stomach were also gone when Mtx dosage has been reduced to 7.5 mg.

Suggest you check with your rheumy.

[Niao in reply to Amy_Lee]

Thank you. I feel very lucky not to have had much nausea, at least not yet!

I think I'll give the nurse a ring on Monday, just to be sure, but I hadn't been worrying too much as the nurse taking the bloods wasn't concerned.

I ,as said, very stupidly, went in armed with questions to ask but came home realising I hadn't asked that one!

[Amy_Lee in reply to Niao]

I think it is quite normal as when we see our rheumy, most of the questions go missing from our mind. So I always write them down and bring with me a long list to ask. I make sure I keep the list in my hand. Now I use my phone to note down the questions and always have my phone in hand with me when I talk to my rheumy.

[Niao in reply to Amy_Lee]

Thank you. Yep, I do the same and did this time but still failed to ask the question! There were just too many things to cover and I got sidetracked. Turns out I have an infection so have had to stop the methotrexate until I get better.

All the best and Season's Greetings and Healthy Happy New Year to you. X

[springcross]

Hi Niao. I've been on injections since September last year and always feel rough for the first few days after but I don't get a sore throat (yet 😟). I think you're wise to give the rheumy nurse a ring just to check it out. xx

[Niao in reply to springcross]

Thankyou springcross, think I will. Can't believe I was so stupid as to forget to ask at last week's appointment! I asked about intestinal/stomach side effects but totally forgot this, even with it written on my list!

[springcross in reply to Niao]

I do that too so you're not alone. xx

[Niao in reply to springcross]

🙂🙃

[Monkeysmum]

Hi Niao, I do sometimes get a bit of a sore throat the day after taking my methotrexate tablets, but it doesn’t feel as sore as a proper sore throat if that makes sense, more an irritation. I did mention it to Rheumy nurse at start of being on methotrexate, and she told me that as long as my blood results were coming back ok, they weren’t too concerned. Now if I get it I tend to just up my fluids that day. I haven’t had a burning nose feeling though, and with everything else going on right now, I would agree with others that it’s probably best to raise it to be on the safe side. Take care xx

[Niao in reply to Monkeysmum]

Thank you. Yes, I hadn't been overly worried as it is really more like a just being run down feeling. My bloods have all been fine too. It's just so difficult as I have always been prone to sore throats and sinus trouble and my throat would often be red/inflamed looking with swollen glands ( think to do with Fibromyalgia) so I don't know how I'm going to be able to tell the difference and worry I'll never be off the phone to the Gp at this rate!

[Monkeysmum in reply to Niao]

I think in the early days they expect you to be in contact more often anyway, better safe than sorry xx

[Niao in reply to Monkeysmum]

🙂

[AgedCrone]

Are you taking folic acid...that helps with the yucky feeling..speak to your rheumy nurse.

[Niao in reply to AgedCrone]

Yes, but just the 5mg days after, so may ask about upping the dose, or taking on 6 days. Thank you.

[AgedCrone in reply to Niao]

Definitely ask about that.... I took a 5mg FA tab six days a week for 7 years and the only side effect I had was a slight metallic taste in my mouth and a Mint Imperial soon fixed that.

[Niao in reply to AgedCrone]

Yes, thank you, I think I will. I meant to say I do actually take extra folates in my multi B on another 5 days but realise that the dosage in these is very small by contrast . I will remember the Mint imperial!!🙂

[Summerrain14]

I haven’t had the side effects you mention, just feel a little more tired the day after now I am the injection form.

I had my folic acid increased to six a day and alongside moving over to the injections I now only have a couple of days at the most of feeling more fatigued. I also do my injection after having my evening meal so sleep off most of the side effects.

I tend to prone to having swollen glands and a bit of sore throat but nothing to write home about so to speak. Maybe a chat with your rheumy nurse to ask what kind of sore throat is a concern and maybe to ask to increase your folic acid to 6 days a week. It made a big difference to me. x

[Niao in reply to Summerrain14]

Thank you. Yes, good advice. I did raise the matter of maybe trying the injection, but for the intestinal issues I'm having. He wants me to persevere with the tablets a while longer, and I'm also to start Hydroxychloriquine, so no I'll maybe have more questions and side effects!!

[DenMum]

Hi NiaoMy early side effects were helped by a change in how I take the Folic acid. My Rheumy changed that from one dose the day after MTX to a smaller dose but taken every day except the MTX day. Did help but the biggest help was weeks later changing to injections. I was very worried about them but they are easy and painfree. Still get a rubbish day the day after MTX but all other side effects have almost gone away. Good luck with the conversation with your rheumy.

[Niao in reply to DenMum]

Thank you! Yes, I feel a daily dose may be better. I did raise the possibility of changing to injections but he said, not yet! But it helps a lot to hear that you find them easy and pain-free as I will ask again if I feel things are not settling, and, being a wimp, I was a bit worried about them!🙂

[Feank]

hello, I also used to feel rubbish like you do. I changed from the tablets to the pen injection and dont have the problems now! worth mentioning to your specialist next time. have a good day.

[Feank]

oops ...have just seen you already did mention it! And no not painful, should you be allowed!

[Niao in reply to Feank]

Thank you!I have just been onto the rheumy nurse, wish I hadn't bothered. She clearly wished I hadn't bothered her by her tone and just said, can't help you with that, need to speak to GP etc. Feeling a but despondent but that'll teach me not to forget to ask everything at the Rheumatology appointment!

[Happy5 in reply to Niao]

ooooo not good, RA nurses have been amazing where I am.Naughty cos that's their job

Is there only one RA nurse ?

[Niao in reply to Happy5]

Hopefully just an off day, but she's had a few of those! I think there are a couple so maybe better luck next time!🙂

[Happy5 in reply to Niao]

Try to find out the name of the more favourable nurse then you can ask for her in future.

[Niao in reply to Happy5]

Will do. 🙂🙂

[Happy5]

Ah yes sounds familiar I was the same sometimes feels fluey.

In the end I was swapped to injections by passing the stomach helped a bit with yuckness.

Think they like to see how well tolerate MTX.

I'm afraid generally feel off couple of days after taken it, but flare ups ensure I keep with it.

That said always worth a chat with your RA nurse as well as consultant, nurses often know things about coping with the whole RA condition.

Does get easier longer you use it I find, but deffo rock & hard place scenario.

Hang in

[Niao in reply to Happy5]

Thank you. Yep, will persevere for another little while on the tablets but if still bad, will ask about injection. It is a kind of mild fluey feel.

[Happy5 in reply to Niao]

Yes that is how I feel some weeks too

[Niao in reply to Happy5]

Unfortunately, this time at least, I think it is a viral infection, hopefully just a cold and the the dreaded other one!!! Have had to stop MTX till I'm better. Merry Christmas Happy5 ,and a Healthy Happy Peaceful New Year! x

[Foxredlab]

Been on methotrexate for nearly five years used to feel a bit nauseous a day or two after but now feel sick most of the time , been taking it for nail psoriasis am on 15mg folic acid does ease the sickly feeling but cannot bear feeling sick for three/four days so am going to see if I can take something else

[Niao in reply to Foxredlab]

Oh dear, I too would see about something else in your case. I feel so lucky to not have had the nausea so far, long may that be the case please! It must be horrible! Really hope you find a solution. x

[chunkypie]

Methotrexate can make you very dehydrated so drinking plenty might help. I used to take my tablets in the morning with a pint of water and then drink as much as I could throughout that day

[Niao in reply to chunkypie]

Good advice, thank you. Am thinking now it may not be side effects as have had to come off for a week due to virus, hopefully not 'the' virus, more likely a cold, but will see!

[BeachsideVia]

is the MTX helping? I quit a few months ago. Flare ups continued after months on it. And my hair started massively falling out to where I had to cut it short. That was it for me. I lost ALL my hair with chemo 9 years ago, to save my life. This MTX was not helping me.

I am on HCQ now, helps with inflammation, and seeking a diagnosis. We are thinking CPPD

[Niao in reply to BeachsideVia]

Hi BeachsideVia

I'm so sorry to hear of all you've been through, very tough indeed, and I can totally understand you giving up on the MTX.

It's been over 3 years now since my RA diagnosis and my starting the Methotrexate.  I am still on it but changed from tablets to injections quite early on.

The answer is no, not really,  MTX on its own does very little for me other than make me feel very rough for about 4 or 5 days a week , not nice but I suppose bearable,  and unfortunately it has totally ruined my hair , I lost between 30 % to 50% which hasn't really recovered,   the loss did slow down a bit but it is terribly thin and brittle.

I was put onto Biologics as I really didn’t get on with the other Dmards, and my Rheumatologist 'insisted ' I stay on the MTX alongside and I agreed purely I know this makes it less likely for the Biologics to stop working etc.

Sadly I'm on my 3rd Biologic and likely to be moved onto my fourth before too long as it isn't working very well to control things. I haven’t been able to come off Prednisolone either in these three years  as the disease hasn't been controlled.

I'm reallreally glad the HCQ is helping with the inflammation and I hope you get somewhere with your diagnosis before too long.

[BeachsideVia]

I am so sorry you have to go through all of this. About 5 months ago I decided to radically alter my diet, eliminating the foods that different knowledgable people say cause inflammation. I eliminated all gluten, all dairy, lectins in many foods, and eat grass fed beef and lamb, chicken and salmon. No oats no corn either. I lost a lot of weight, not trying to, which is good. My recent flare ups were from over doing it so I am learning to take it easy. So far so good! I have aches and pains but nothing severe since I started HCQ. I feel quasi nauseous all the tome and that is not fun. But all this is better than last year when many days I could not do a thing!

[Niao in reply to BeachsideVia]

Well done, I know from having done quite strict elimination diets in the past how hard it can be and it's great you're seeing some good results.

My diet is vegan and relatively simple , I have tried eliminating many things but am just not seeing the results I used to so unfortunately rely completely on the meds , diet only goes so far with me.

Nausea is horrendous, I feel for you, fortunately I'm not too bad that way most of the time.

Keep up the good work and definitely work on the pacing yourself.