Methotrexate: side effects(?) started almost 9 months in?

[girli1111]

I seem to have been quite lucky, no nausea etc on methotrexate, but almost 9 months in I’ve noticed that recently I am feeling totally wiped out for a couple of days after injection day. Added to this I’m not too sure that it’s helping me anyway. Has anyone else found that they started out ok, with no side effects, but then developed them later on? I have review week after next with Rheumatology.

[Matilda_1922]

I started ok with methotrexate for a few months then nausea and fatigue set in. I was changed to injections and continued to feel unwell following day of methotrexate. I’m taking folic acid every day apart from methotrexate day.

I’m hoping to come off it soon.

[girli1111 in reply to Matilda_1922]

Thanks for your reply. Mine is also injection, and I too take folic acid every day other than injection day. Not sure methotrexate is worth the fatigue, so far only thing that has really helped have been the depomedrome injections

[Matilda_1922 in reply to girli1111]

Me too I’ve had several depo steroid in the past thirteen months.

The fatigue and stiffness is really bad that I asked the consultant whether this will ever go and their reply was it’s a million dollar question.

[girli1111 in reply to Matilda_1922]

Helpful! It makes me feel quite down that I can’t do the things I used to do. Are you going onto a different medication when you come off methotrexate?

[Matilda_1922 in reply to girli1111]

I went through all DMARDS the last year and a half had side effects +++ so started Benepali in November and seems to be working. I’m hoping to come off methotrexate soon

[helixhelix]

I was on MTX for two years before I started to develop mouth ulcers.... thankfully the swap to injections solved them.

Amd yes I'm a bit useless the day after, but For me it does help hugely.

[girli1111 in reply to helixhelix]

I’m really unsure whether it helps me or not. My inflammation markers are undramatic, even when I have quite a lot of pain, but maybe they’d be a lot worse without the methotrexate. I made the mistake of not taking my folic acid just once, and immediately paid for it with three mouth ulcers - won’t do that again! It may be that I just have to accept the fatigue when it hits. Will discuss options with rheumatologist soon, thanks for reply,

[Matilda_1922 in reply to girli1111]

I used to suffer with mouth ulcers and cold sores but the nurse who came to show me how to inject Benepali advised me to see my GP for acyclovir for 6 months Which they have given to me. This has solved your cold sores and mouth ulcers.

[Creakywrists]

I’ve been on methotrexate for nearly 3 years. I had a lot of side effects in the early months - hair loss, mouth ulcers and dizziness were the worst. Upped folic acid and switched to injections and was much better but I’m still a bit fragile the next day. I’ve noticed that if I take care of myself the day I take it I’m not so bad. I drink a lot of water, have an early night and don’t do too much. I also don’t plan a rushed day the day after. It’s always worked for me but not quite well enough, even alongside other DMARDs. I’ve been on Benepali as well since January which has improved things greatly. I have been told that I’m likely to stay on methotrexate but I’m hoping I can eventually reduce the dose.

[Matilda_1922 in reply to Creakywrists]

It’s difficult for me to take it easy the on the day of MXT as I’m working in a busy and active work. I now work less hours but this doesn’t always work like last Thursday I finished 40 minutes late and don’t get my time back.

I do drink copious amount of water and I go to bed early to sleep on the side effects but still feel quite nauseous and very tired the next day or 2 depending how tired I am.

I’m just hoping that Benepali works and I can be weaned off MXT soon and hopefully I get my energy back.

[Creakywrists in reply to Matilda_1922]

I see how difficult it must be for you. When I first got RD I was trying to finish a big piece of work and I still remember typing my final report with a hot water bottle on either side of the keyboard to rest my hands on between words. I didn’t work after that. I was freelance which means if you can’t do the work quickly and efficiently they get someone else the next time and my mobility was very poor. I still miss it.

I have great admiration for those of you who work and raise children through the ups and downs.

I hope Benepali works well for you and you can ditch the MTX

[Hidden]

I think the methotrexate has affected my husbands breathing, has anyone else had trouble with their breathing ?

[Matilda_1922 in reply to Hidden]

Since diagnosis of RA I been diagnosed with bronchiectasis in December 2017.

I had to push this with GP and rheumatology service as cough started approximately 9 months after RA diagnosis. I saw GP several times and each time they said my chest was clear but I had a chest X-ray with both GP and rheumatology the same week. GP showed swollen lymph node and rheumatology was clear. So GP asked for a sputum specimen which came back showing a bacterial infection. I had a 5 day course of antibiotics a couple of weeks earlier which didn’t do anything as I started coughing in front of gp.

Saw another GP who gave me 2 lots of antibiotics for a week due to the bacterial infection which Improved my cough for a short time.

After another course of antibiotics and further tests as each time chest sounds clear I eventually saw a respiratory specialist who diagnosed bronchiectasis.

This is my story hope it wasn’t too much. But as I say your partner needs to be firm with the healthcare services to be heard.

I have asthma which I have had for several years.

[Hidden in reply to Matilda_1922]

Thank you for your reply, any advice is gratefully received.

[Parker16-]

Hi yes in the beginning ok for a few months with some side effects but I was like you washed out for a couple of days then that extended to more washed out than good days. My liver readings then went up to 190 so had to come off them . I too thought they was not doing anything until I came off of them now I am really seeing the difference . They wanted to try me on other drugs but due to starting a job that I am now struggling with I have said I want a rest from the horrible side effects and can’t afford to loose my job due to sickness. But I will need to go back on something as each day the RA takes more of a hold . Make sure at your review you really push the issue with them as you should not need to feel like that. They sometimes add something with it that may help but RA can fool us that it is not making a difference until you are not on treatment. But like us all don’t suffer they say there is something for all of us but sometimes we have to change the treatment. Good luck let us know what they do . Pam

[Gameo]

Hi girli 1969

I had a look at your reply’s with interest and one from jimijames saying her hus band had breathing problems if she could look at some of the posts l have done it may help in some way hope you are feeling well

[Hidden]

Hi, which posts are these? Getting no help from go, I would be glad of any advice, thanks

[Moleymum]

Yeah I was no treatment for around 2 years before the nausea kicked in. They upped my folic acid from once a week to 3 x a week and that has helped enormously.

[girli1111 in reply to Moleymum]

Do you take 5mg on each of those days? I’ve been on 5mg 6 days a week since I started methotrexate

[Joy_1]

That wiped out feeling hit me when I went from 15mg to 17.5mg.

Then over a few months that wiped out feeling went from 2 days to half a day.

[girli1111 in reply to Joy_1]

That sounds promising... I’m on 20mg injected.

[Joy_1 in reply to girli1111]

Hopefully you'll go the same way. I have found with MTX and I know others have said the same thing. That your body gets use to the drug and some of the side effects either disappear or calm down.

[Hidden]

I ve had side effects from start, despite lowering dose & doing all the right things. Does it build up in your system? I hate the stuff and have leaflets on sulfasalazine & leflunomide next: loads of side effects for them too! Am more fed up with meds than RD at mo' which probably means they re working but at what cost to your quality of life? I wish they could find something that didnot cause fatigue n sickness.

[girli1111 in reply to Hidden]

I hope you find your solution soon x

[Hidden in reply to girli1111]

You too, bit depressing really x