Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Flip

1 2 3

Original poster

Methotrexate for lupus/RA etc...Just been prescribed it and I'm scared witless

53 replies

LackaDAISYcal · 08/05/2014 17:56

Not least of all because they have told me to stop drinking my beloved

It sounds like it can have some nasty side effects, but are they worth it for a pain free existence. I've been on plaquenil till now, but at my clinic today they have said my fingers and toes are horribly inflamed and I have bursitis in several joints. I've been having regular depo-medrol injections, but they think that if I am relying on them to give me relief then the plaquenil isn't working as it should and it's time for something stronger.

Anyone with any experience?

OP posts:

denialandpanic · 08/05/2014 18:20

I've been taking it for over a year now.I was also terrified and I think started as thread at the time. it has helped. I'm still not pain free because it doesn't treat the spinal element of my condition but if not for that would be perfect. I had some nausea but no serious side effects. I take it Tuesday at bedtime and by Friday/Saturday feel comfortable drinking a glass of wine every few weeks or so. i would not drink anymore than that.

MrsMaturin · 08/05/2014 18:23

This is a pretty heavy duty drug. You would not be prescribed it lightly. So yes I think you need to take it. It will be carefully monitored.

Stopping drinking wine is a shame if you enjoy it but it won't harm your health. Not using an effective medication to combat your serious conditions WILL harm you however. Give it a try and keep a diary of any side effects you feel you have. You may not get any of course.

Original poster

LackaDAISYcal · 08/05/2014 18:39

Oh, I'm not disputing my need to take it MrsMaturin, just looking for reassurance that the side effects are manageable and get some other perspectives on how it has helped or otherwise.

I'm being a bit flippant about the as well; I do love a glass, but I value my health much more and if this can stop my joints from undergoing serious un-reversible damage then of course I will take it. At the moment there is no damage to my joints, but they are very inflamed and sore. And, my rheumy pointed out that the side effects of the metho are actually much less bothersome than the possible effects of long term regular steroid use.

Thanks denialandpanic; I'm glad it has helped you. Do the side effects like nausea wear off the longer you take it?

OP posts:

MrsMaturin · 08/05/2014 18:43

Ah I see. Sorry I thought you were thinking of NOT taking it.

MadMumToThree · 08/05/2014 18:47

I take this for sarcoidosis Have done for over a year and unfortunately I still suffer nausea/sickness for a couple of days after taking it.

I'm on 17.5 a week not sure if that's high or not but will affect everyone differently of course.

Hopefully you will get some relief with it.

trace2 · 08/05/2014 19:33

Am on it been on 3 years am fine with it no side effects and I still drink but on the night I take it am very tired heavy body next morning but wears off by tea time! But I can only take 6 which is 15 mg tabs as it's knocks my white blood count off so I have sulfazaloline as well ! It works for me but still gets flare ups

Original poster

LackaDAISYcal · 08/05/2014 19:34

The dose they have prescribed is 15mg, rising to 20 in 8 weeks time when I have my check-up. Time will tell I suppose. I'm enjoying my final few glasses of wine tonight. Probalby not a bad thing to stop; that combined with the nausea and loss of appetite will help with my long overdue weight loss

OP posts:

trace2 · 08/05/2014 19:37

8 weeks you should have blood tests every two week to start with make sure it's ok

Hulababy · 08/05/2014 19:37

I take 30mg of methotrexate a week, alongside other meds (prenisolone, sulfasalazine, etc) I take 3 on a Friday and 3 on a Saturday Other than making me feel very tired for the first 24-48 hours I notice no other side affects.

My consultant and my GP both said I can have 10 units of alcohol a week approximately, and just not to "go mad."

Hulababy · 08/05/2014 19:37

I had blood tests every month for the first 3 months.

trace2 · 08/05/2014 19:38

Have they gave you colic acid for everyday but not on methotrexate day ?

Hulababy · 08/05/2014 19:38

Oops - 15mg, not 30!!! (6 tablets)

Hulababy · 08/05/2014 19:39

I only have one folic acid tablet a week - 2 days after the first dose of meth.

Original poster

LackaDAISYcal · 08/05/2014 19:42

Hi trace . Sorry you're still getting flares. I was doing OK, but it's all gone pear shaped recently.

OP posts:

trace2 · 08/05/2014 19:42

Lol I was going to 20 is usually the most they give you hula , my folic acid is 5 mg daily

trace2 · 08/05/2014 19:44

Daisy it could have flared with your recent problems , it really is a good drug Am ok only have um now again not like before so don't need steroids as too either x

Original poster

LackaDAISYcal · 08/05/2014 19:45

yes, got the folic acid. What does that do? He didn't explain it very well Also got the envelopes for two weekly blood tests and booked in with the rheumy nurse in 8 weeks.

30mg sounds quite high hulababy! Maybe after the initial period they will "let2 me have a glass of wine or two?

OP posts:

IkeaFurnitureAssemblyChampions · 08/05/2014 19:47

DP takes it for RA and yes, it's a pretty heavy drug. It has helped him a lot though. It was harder when he started, both times, (he's started, stopped and then started again as he had to take a break from it so we could conceive DC2) then things settled down after a while. He does often feel tired for a day after his dose though.

YMMV but he is allowed to drink in moderation. He has switched to alcohol-free beer which he enjoys but tonight for example he had a glass of wine.

I can imagine it's pretty scary. DP has definitely had much less pain since starting on it though.

trace2 · 08/05/2014 19:47

It's supposed to stop side effects daisy it is a chemo drug

BeyondTheLimitsOfAcceptability · 08/05/2014 19:49

Honestly? I've been taking it for 7 weeks and it is not agreeing with me at all - sick, dizzy, fainting and hot flushes. And so much for my weight loss plan, its very like morning sickness. I need to be eating to not feel sick. Constipation has gotten ridiculous too.

Rheum says to perservere, it could go away once i am used to it. And my joints are no better either (not that i expected them to be this early, but it'd be nice to have a positive) i'm on 6 tablets and then 6 folic acid a week too, in an attempt to make me feel better. Ha.

Im unlucky though, most people are fine. I hope you have more luck than me x

Hulababy · 08/05/2014 19:49

Lol! Yes, 30 would be high!

I know it is 6 tabs - have so many other meds they all get mixed up if I am not careful.

TBH I am not yet convinced the methotrexate is necessary for me and going to ask consultant about not taking it and seeing how I go on just the sulfasalazine again. Had a big flare up this winter hence starting it this year - but I just haven't noticed any real changes tbh,

Original poster

LackaDAISYcal · 08/05/2014 19:51

I thought that too trace, but they seemed quite dismissive of that (and I'm shamed to say I cried when he asked if there was any chance I might be pregnant ). The plaquenil has only ever just taken the edge off things and it's the steroid injections that have always made me feel better.

I'm going for a DEXA scan and a head CT as well, as I have a furrow that has appeared on my scalp from the top of my forehead back about four inches that they think may be down to loss of bone density, possibly as a result of the steroids.

So fed up of it all, it seems like one health thing is sorted and another rears it's ugly head...and DH is pissed off because I forgot to get milk

OP posts:

trace2 · 08/05/2014 19:55

Hula what do you take them for if you don't mind me asking? Daisy yes the injections do this but mine bones are bad without so I just go with flo xxxx

elfandsafeT · 08/05/2014 19:56

I've recently been diagnosed with RA or possible PA and been told I need to start the drugs on Monday.

They said I could have Hydrochloroquinine and either Methotrexate or Sulfasalazine - I chose Sulfasalazine because I didn't want to stop drinking and because I'm scared of the long term effects (even though Methotrexate is probably a better drug according to Consultant) so totally understand the fear!!

Original poster

LackaDAISYcal · 08/05/2014 20:01

Yikes Beyond, that sounds rough . I really do not need to be eating more than I already do

IKEA (love the name) and MAdMum (I should be called MumtoMadThree, lol), thanks for sharing your experiences.

My condition has been dx'd as mixed connective tissue disease, but as my symptoms are mainly lupus symptoms with a bit of something else involving the feet thrown in, they are treating me as having lupus. I knew methotrexate was used for RA, but didn't know it was generally used for lupus. My symptoms are also supposed to be quite mild, I can only imagine how bad other people must be.

(and for those that don't know me off board, I had a hysterectomy just over a month ago, hence the emotional claptrap at the clinic )

OP posts:

Flip

1 2 3