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Original poster

About to start methotrexate, any experience / tips?

69 replies

denialandpanic · 22/01/2013 19:59

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 Grin. 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 Wink

OP posts:
wonkylegs · 25/01/2013 08:23

denial re Physio - NHS Physio doesn't seem to have any time to treat anything but acute problems. Since injuring my hip I have paid for some private sessions and it has been a revelation. If you can afford it I would highly recommend a few sessions mine were about £35 for 45mins

Original poster
denialandpanic · 25/01/2013 22:42

could find the physio money if I were to put myself first for onceWink there's actually a local private physio world through our surgery that I keep making to look into

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vole3 · 26/01/2013 05:53

The only other thing to mention is that you can get looser bowels with it. I am now on the injections rather than the tablets and it is much better.

Had 1 month about 6 months after starting it when I came down with 2 bouts of conjunctivitis, a chest infection & a UTI, but no problems in the last 3 years and added humira into the equation 2 years ago.

MadMumToThree · 26/01/2013 07:31

I take methotrexate 17.5 mg weekly along with 15mg prednisone daily for sarcoidosis - folic acid once a week. I find about 2 days after mtx I have an 'off' day - nausea/sickness/diahorrea - followed by extreme tiredness/headache. This had started to improve but have just increased dose - has made a huge diff to my condition - particularly the return of my voice! Hope it is helpful to you.

crashdoll · 26/01/2013 09:04

Do put yourself first, you are worth it! Wink This isn't a new handbag or some pretty shoes, this is your health and if you can afford it, physio can make all the difference. I have private health insurance and have physio through that but it's limited and I end up paying. It is worth it if you find the right physio especially if you are motivated to do the exercises regularly.

Original poster
denialandpanic · 29/01/2013 21:38

taken first dose, working from home tomorrow.fingers crossed

OP posts:
Original poster
denialandpanic · 29/01/2013 22:27

bump for korma

OP posts:
Yardarm · 29/01/2013 22:56

Are you building up the dose over a couple of weeks?

Kormachameleon · 29/01/2013 23:20

This reply has been deleted

Message withdrawn at poster's request.

Original poster
denialandpanic · 30/01/2013 08:06

yardarm, I started on 7.5mg. the prescription was for 15 but I was too scared to take all at once.Will build up as I go.just queasy this am. haven't actually got out of bed yetGrin

OP posts:
Original poster
denialandpanic · 30/01/2013 10:22

Korma, I have been diagnosed about a year.probably two years since I first experienced symptoms that got described as possibly inflammatory arthritis.some of my symptoms I have had for years. I'm odd in that I have very little psoriasis. my worst issues are enthesitis shoulder and now ankles, sacroilliac issues, site and swollen hands and knees. I have had shoulder and upper back issues for more than ten years. went to rheumy when hands and toes began to hurt after dc. then a big flare and sacroilliac and ankles joined in the party. at first my bloods were normal now showing signs of inflammation.

OP posts:
ShirleyB25 · 30/01/2013 10:42

I've been on it about 3 years for rheumatoid arthritis and think it's the most brilliant drug ever as it allows me to work and walk normally. Initially I had tablets, and would get a really mean headache about 4 hours after taking it, as well as nausea etc. However, after switching to injections, and Folic Acid the 6 days I don't take it, there are virtually no side affects at all. I find its best taken in the morning, not sure why, but if I take it at night, it can wipe me out the next day.

Best of luck, as it is a scarey drug, but so worth it if you get relief from the symptoms. By the way, it did take 3 months before the good effects really kicked in. If it is decided that injection may be better for you, don't be put off, as it really helped to lessen side effects and isn't too bad. I'm on 12.5mg and rarely have to take anti-inflammotory drugs ( would take diclofenac 50mgs three times a day before).

redshoes · 31/01/2013 14:00

Hi I was diagnosed with PsA early December and started on 10mg Methotrexate weekly plus 5mg Folic Acid also weekly. I was recommended to take the Mxt on a Monday and the Folic on a Fri - to help remember! I had no side effects but unfortunately no main effects either - my PsA got worse. Upped to 15mg a cople of weeks ago and I think slight side effects immediately after taking but no results as yet. I know it's a long game but I am getting frustrated and tempted to stop drugs altogether - I am still developing PsA in new places, also Psoriasis which I didn't have before I started! Hope you have more luck....

wonkylegs · 31/01/2013 14:37

Redshoes don't get disheartened I got no benefit until I hit 15mg and then it was only minor but then at 20mg it was great for many years. I then stopped it to have DS and when I re-started 20mg didn't do it anymore so they tried me on 25mg and I got sickness and no further benefit. So I'm back on 20mg with Humira which works fantastically again. I have RA not PsA but similar applies I believe.
It's a slow & frustrating game, (I tried many meds before MTX) but when they find the right balance it's life changing.

Original poster
denialandpanic · 31/01/2013 16:24

redshoes it is the long game I'm afraid. you can also try injectable methotrexate I understand which might get you to a higher actual dose than you can tolerate on the tablets.I'm already on sulphasalazine which had really helped but I'm not near normal which the rheum team have said I have a right to expect.that's why I'm adding in the methotrexate.you just have to keep trying

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redshoes · 31/01/2013 16:27

Thanks Wonkylegs - I guess when I next see my rheumy in a few weeks he will up it again. I just feel dreadful all the time and seem to be going downhill fast :( I hope I find a level that is life-changing. My brother has had miraculous results with Humira (for Psoriasis)...

Yardarm · 31/01/2013 22:29

It's interesting hearing everyone's experiences. I think I've slightly changed my mind from last week when I said I don't get any side effects. I do sometimes get headaches etc on the third day after MTX and I always assumed it was unconnected to the MTX because of the time lapse. However, hearing what others are saying maybe it is possible to get the side effects on the third day.

Denial, I used to be on Sulphasalazine and it was really effective for 15 years but after breaks for pregnancy it stopped working for me. Hopefully the combination of both will be successful for you. How have you tolerated your first dose of methotrexate?

Aftereightsarenolongermine · 01/02/2013 07:38

Hi I'm on MTX & prednisolone for PA though I don't actually have psoriasis but it does run in my family. I'm on 17.5mg MTX weekly & at first it used to knock me out & the nausea was awful but I'm now able to tolerate it much better, it helps that I take it over 2 days. But I'd say it took me about 6 months to get used to it & I've been on it for about 3 years.

GP has referred me back to hospital as she also wants me on anti-tnf but still waiting for appointment. i can also recommend private Physio & pilates if you can its helped improve my mobility a

Original poster
denialandpanic · 01/02/2013 10:41

yardam, I've been fine :-) I only roll half what was suggested because I had a last minute panic but feeling quite confident about upping it next weekGrin

OP posts:
Original poster
denialandpanic · 01/02/2013 10:42

took half grrr I wish you could edit posts.

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Yardarm · 03/02/2013 20:43

Denial, Grin at roll half! Had visions of you playing marbles with them! Glad you're feeling confident about the next dose :-)

Original poster
denialandpanic · 04/02/2013 09:45

Dosed with a cold and earache nowAngry Angry not sure what to do tomorrow.

OP posts:
Aftereightsarenolongermine · 04/02/2013 19:40

I never take MTX if I'm feeling under the weather. But speak to your GP first mine always errs on the side of caution.

Original poster
denialandpanic · 04/02/2013 20:32

yes, hurts to breathe too so no avoiding gp in amAngry Angry

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Yardarm · 04/02/2013 23:42

I haven't missed mine for feeling under the weather but I did once take a week off when I was on holiday. Could also check with Rheumatology nurses? Hope you are feeling better soon.

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