About to start methotrexate, any experience / tips?

[denialandpanic]

I'm about to start methotrexate for psoriatic arthritis. I work five days a week, two kids and I'm dreading the side effects. Any tips on how to manage? My boss suggested I take them Monday night so as not to ruin my weekend with my family . i have a good boss.

I like to be organised so I'm considering asking to work from home they day after the dose for the first while. please tell me if I'm overreacting

[booksandchoc]

DH is on methotrexate and gets really tired/loss of appetite the day after he takes it. I would definitely have a day at working from home, at least till you are used to and know what side effects you will have. Are u taking frolic acid once a week or every day except methotrexate?

[denialandpanic]

I have to pick up the prescription from the hospital tomorrow.folic acid wasn't mentioned but I will ask if it's not included.it looks like our local hospital goes for 10mg two days after the methotrexate dose.

[crashdoll]

What dose are you starting on? Some people recommend taking a couple of tablets, then a couple later. I always just used to take all the tablets right before bed, now I'm on injected metho and I still inject right before bed. The only side effect I still get (2.5 years later) is fatigue the next day. When I started, I did feel sick (especially as the dose was being increased) but cyclizine kept the sickness at bay. I take 5mg folic acid every day except the day I inject. I would HIGHLY recommend taking folic acid 6 days a week. The difference in how I tolerate the drug has been huge. Many rheumies say once or twice a week is enough but I disagree, as does my lovely rheumatologist.

Please don't over stress about the side effects because we are all different. Bear in mind that the first few doses can be tough to handle but it is can (and in many cases, does) pass. If you could work from home, I'd say it's a sensible precaution. Lots of people are scared of methotrexate (and I totally understand as I was too!) but there are things you can to help yourself/prevent side effects.

Sorry this was long but hope it helps somewhat!

[denialandpanic]

I'm knackered all the time already I hope this is worth it.won't know until I try though

[denialandpanic]

crashdoll that's great thank you

[denialandpanic]

I think the starting dose is 10mg. I'm already on sulfasalazine, celebrex, codeine, paracetamol, lansoprazole. I'm a walking pharmacy

[yorkshirepuddings]

Try not to worry. It might not be as bad as you think.

What dose are you starting on - tablets or injections?

My DS 11 takes methotrexate for his arthritis. Doesn't seem to suffer any side effects. Doesn't take folic acid either.

I was warned that he would catch every bug going due to his immune system being suppressed. This hasn't been the case. Although a cough did take about 5 weeks to clear up recently!

[denialandpanic]

Yorkshire

[yorkshirepuddings]

You might be fine on 10mg. My DS is on 17.5mg injected. I haven't changed what he does at all.

[denialandpanic]

a colleague at work's dh had really struggled in the tablets for ra and has just switched to injections and so far doing better. is your ds affected day to day? I hope they have his arthritis under control. horrid disease.

[colleysmill]

When I took it (for psoriasis) alcohol was strictly off limits so my lovely friends took me out for one final night on the lash (i was young then). Next day took the pills and spent the next 24 hours vomiting and we never knew if it was the metho or hangover from hell.

I don't remember particularly suffering from side effects tbh - I did lose weight though and saved a fortune being teetotal. I took mine on a Friday night just out of convenience.

After 6 months my consultant wanted me to take a break (this might be old hat now as I took it 10 years ago) and I rebounded very badly and very quickly so I never took it again.

[denialandpanic]

they now say you can drink in moderation but I'm too scared. I like my liver add far as I know it's a constant dose with monitoring via blood test reducing as dose stabilizes.

[yorkshirepuddings]

DS did start on the tablets but the flare ups still came quite frequently. Moving to injections has helped more. Every 5 months or so the arthritis is bad enough for cortisone injections.

It is a horrible thing to have, but generally day to day his pain is under control. It could be worse. There are lots of children who suffer much more pain and lack of mobility than my DS. About 1 in 1000 children will get juvenile arthritis - it's not as rare as people assume.

On the bright side I always think there is loads of research and new meds all the time.

[wonkylegs]

Don't worry too much if it doesn't agree with you remember you can always stop it and try something else.
I take mine just before bed so that I sleep through the mild nausea I get. I've generally been fine with side effects I'm on 20mg, however I can't take the next dose up as that makes me feel really nauseous. So when 20mg stopped working for me I have started on Anti-TNF to supplement rather than go up to the higher dose.
I found that my tolerance for alcohol was greatly reduced at first but many years down the line it's no longer an issue.
I can't remember if you said if you were taking a stomach protector with your anti-inflammatories as for me this has been a greater issue and getting it sorted helped with the mtx nausea.
You may get mouth ulcers if this is the case try upping your folic acid dose and try using a medicated mouthwash like Oraldene. Take it easy to start off with it's a lot for your liver to process but hopefully it'll settle quickly.

[denialandpanic]

thanks wonkylegs, I have lansoprazole I'm really heartened by rheumy nurse her attitude is they are aiming to get me to just like a "normal" person (just taking lots of tablets)

[colleysmill]

Things really have moved on in recent years - since I took methatrexate I've tried biologics (2 types) recently which has had brilliant results for some (but sadly not me!) The biologics seemed to really hit my immune system hard - I averaged a course of antibiotics every 6 weeks when taking them when generally I haven't really noticed any marked difference taking anything else.

My particular drug of choice is ciclosporin - I find it really suits me although initially I noticed real fatigue in the evenings when restarting it this time along with the normal funny tingling sensation for the first 2 months in my fingers and toes.

[2plus2]

Check out NRAS web site it has been life saver for me since I was diagnosed last year. I had three months on MTX you should have been given information leaflets and advice on folic acid, not drinking alcohol and having blood tests. Give it a go lots of people find it really good, unfortunately it didn't like me so i am on different medication now. Good luck with your treatment

[Pigsinblankets]

My DH takes methotexate (25mg) weekly and has very few side effects. He takes folic acid once per week and an anti tnf (humira) injection once every 2 weeks. These drugs have changed his life, he's now a very successful triathlete whereas he could hardly move before. He does drink alcohol, not a massive amount but he does also have monthly blood tests to check his liver function. As others have said, try it, you can always cut back. Good luck.

[Pigsinblankets]

ps his is psoriatic arthritis too. The more exercise he does the better. Tbh the only time he has a flare up is if he doesn't exercise daily.

[denialandpanic]

thank you pigs and 2 plus 2. I'm getting there with the exercise.I'm swimming three times a week.would love to go every day but can't seem to carve out more time.I'm hoping the methotrexate works so that I have less pain and am less wiped out in evenings and can go swimming instead of wimpering on the sofa

[sashh]

Not what you want to hear but I was on it for 10 years and always had side effects.

The day after taking it was like having flu, just tired, dopey and initially I used to vomit but this did reduce to nausea after a while.

[crashdoll]

Please be careful with the exercise. Many people with inflammatory types of arthrtis find it painful to move more. I read an interesting article on this only recently. Also, when your joints are hot, swollen and extra painful, the advice is to rest. Is anyone working through an exercise programme with you? Some people get good advice from a pain clinic, however I have a wonderful specialist rheumy physio who works with me to get moving.

[RunnerHasbeen]

I lived a completely normal life for 6 years on methotrexate, after the first few weeks adjusting to it. I came off it to try for DD and didn't tolerate it when I tried to go back on it, I was gutted, still am, I was desperate to get back on it. With hindsight I can clearly see how much better I was on it, you will likely be able to stop taking all the anti-inflammatories and painkillers, so the feeling "like a pharmacy" will balance out.

I drank in moderation after the first year and never had an abnormal liver reading, even the day after a few drinks. In 6 years I had no hot swollen joints (down from two drainings and injections a week), no high inflammation levels, no real bugs going around. You would not have been able to tell me apart from people who had never been ill. Even though, prior to methotrexate, my wrists had been so bad I couldn't lift a cup of water, one year in I was able to do 6 day sea kayaking trips with no pain or problems. I could run, cycle, everything. I had so much more energy, I hadn't appreciated how bad that side of things had been.

Don't let the adjustment period worry you too much, give it a chance, if it works well for you, you are really lucky. If you have GI side effects, you can swap to injections. Good luck.

[denialandpanic]

Well I've been and picked up the tablets (15mg methotrexate and 10mg folic acid for two days after methotrexate) and my pink book and had my chest x ray. I have my sulfasalazine bloods booked for Monday so will talk to nurse then about when to start. reading the guidance I think i might need the pneumonia jab I've only had the flu one.

Crashdoll i understand what you mean about the exercise. i am careful and find it really helps my tight muscles / tendons. My rheumy really pushes staying as active as possible. I did do a physio "back class" but it was very general. My experience is that physio just don't want to know about me as none of my issues are a quick fix. Before the PSA was diagnosed I was there at least twice a year with my shoulders/ back.

Onwards and upwards now . I've had very little side affects with the sulfa after the first month or so so fingers crossed my luck will continue. i would love to be able to ditch / reduce the codeine and celebrex. The long term effects of max dose celebrex really worry me much more than methotrexate strangely.

Runner have you found something else that works for you? I am fortunate in many ways as the trigger to this latest big year long flare seems to have been stopping feeding my second child. Looking back the PSA was almost certainly there before just not so bad that I went seeking answers. The one thing i have been lucky not to have to worry about is coming off meds for conception and pregnancy.

Thanks everyone

[Yardarm]

I have been on 15mg methotrexate for a couple of years now and I don't get any side effects at all, no nausea, headaches or fatigue. I take mine on a Tuesday and take folic acid on the other 6 days. I find methotrexate a really effective medication - I now live a pain free and completely normal life. I can walk, swim and cycle and have plenty of energy. I also drink in moderation (2-3 units / week) and my liver results are always fine. I do understand your anxiety but you will see real improvements in your quality of life and overall well-being. Good luck. Let us know how you get on.