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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 Wine

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:
Original poster
LackaDAISYcal · 08/05/2014 20:02

what's PA elfandsafeT (another class name Grin )

OP posts:
Original poster
LackaDAISYcal · 08/05/2014 20:05

scratch that, is it psoriatic arthritis? My MiL has it. she can't take anything stronger than anti inflammatories as she had an immune system crash a few years ago and we nearly lost her Sad so they won't give her anything else. I feel crap as she maintains an immaculate house and never compains, yet my house is a tip and I am all "woe is me" Blush

OP posts:
BeyondTheLimitsOfAcceptability · 08/05/2014 20:39

Psoriatic is what i have :(
And hms. If i was a dog... Grin

BeyondTheLimitsOfAcceptability · 08/05/2014 20:40

My mil has RA. Funny, they say men go for women who remind them of their mothers... Wink

Original poster
LackaDAISYcal · 08/05/2014 20:56

cleary DH only loves me for my health conditions, and not my ability to keep house Grin

OP posts:
elfandsafeT · 08/05/2014 22:16

Yes my mum has psoriasis and my dad had RA - good combo (not!) thanks genes - my Mil has Alzheimer's so let's not got there - enough on my plate already.

Immune system crash sounds scary!

denialandpanic · 08/05/2014 22:27

I'm on 25mg, ten pills a week.it does still make me nauseous but I have lost weight soConfused

Original poster
LackaDAISYcal · 09/05/2014 00:03

ah, we are concerned over MiL's memory too. scary stuff. Though to what extent it is caused by her constant pain we don't know.

It would be nice to be flippant and say "every cloud" denial, if I didn't know how crap it all was Flowers

OP posts:
Sleepingstarsmommy · 09/05/2014 10:03

Student nurse who has done a placement on rheumatology. If oral methotrexate proves to give unbearable nausea (but it does often settle a few months in) then it is possible to have it as a little injection under the skin. Evidence shows this reduces side effects and improves effectiveness of the drug. Just another option to consider.

Have to say where I did my placement the drs all took their time to explain and make sure the patients always understood things. And in case they had any questions or worries they had access to a telephone helpline on mon - fri manned by nurse specialists who were fantastic. Loved this placement and thought the whole multidisciplinary team worked fantastically together to support their patients.

From what I learnt I would say it is def worth trying it - you should be very closely monitored when you first take it so any potential probs should be picked up very early and dealt with. And long term use of steroids is far more damaging.

queenoftheschoolrun · 09/05/2014 12:35

I was one of the unlucky ones. I had terrible side effects, - nausea, chronic tiredness, loss of appetite etc - and after nearly 2 years of hell I told my consultant that I refused to take it any more. With hindsight I should have done so earlier but she kept fobbing me off with different dosages or trying other meds in conjunction with the methotrexate.

Luckily my GP supported my decision and persuaded the consultant to try me on different meds. They didn't work either but when she retired I got a fantastic new consultant who has found a combination of meds which work. I am a changed person!

Having said all that I do know people who have had success with methotrexate and no side effects - including my MIL! So my advice would be to give it a go but bear in mind that you don't have to take it forever if you don't get on with it.

Hulababy · 09/05/2014 13:06

Trace - PA

awaynboilyurheid · 09/05/2014 16:31

Do you need to stop drinking on methyotrexate? my mum been on it for years and she doesnt drink much but has a glass of wine now and then no one ever told us that

Hulababy · 09/05/2014 19:00

It can affect your liver so obv drinking as well can be an issue.

I was told to restrict drinking to 10 units a week

elfandsafeT · 09/05/2014 19:12

I was told none or 4 units max - far too little for me!

Hulababy · 09/05/2014 19:41

The leaflet I was initially given said 4 units. The consultants and the GP have all said 10.

Original poster
LackaDAISYcal · 09/05/2014 21:11

sounds rather grim queen, but good to hear you have a regime that is working for you now.

Sleeping, thanks for that Smile; the registrar I saw did go through it all thoroughly, but the clinic was running a couple of hours late, I was too hot, hungry, fed up and in a bit of pain from my hip so I didn't take in as much as I normally would. Four hours of my life, by the time I saw the nurse, waited for the doctor, went to get my chest x-ray, then back to get my bloods done and finally, the long awaited steroid injection. Normally I am in and out in an hour! I do have the clinic helpline number but they are only there Mon - Thursday.

Queenoftheschoolrun aside; how long does the nausea typically last? Is it like a few hours, or a day or two after taking the dose, or all the time? Haven't plucked up the courage to take it yet. I was going to start it on Sunday as that is my normal day off and I won't be back at work till Monday evening, so it'll give me time to deal with feeling shite, if I do.

OP posts:
NK5BM3 · 09/05/2014 21:21

Prob not going to help much but my son was diagnosed with juvenile arthritis when he was 4.5 years old. And they started him off with pred which helped with some symptoms but didn't being the inflammation down to normal. So we went on to methotrexate. He was on it for over a year (and folic acid) and he's now in remission.

Our consultant at gosh is obviously v pleased as are we. We did notice side effects like him getting tired etc. obviously he never had alcohol (!!!) but it really worked..

Good luck with this. Thanks

Original poster
LackaDAISYcal · 09/05/2014 22:17

Good news for your DS NK5BM3; Long may his remission continue, must be awful being in pain at such a young age Sad

OP posts:
marsybum · 09/05/2014 23:38

lackaDAISYcal is your rheumy at chapel a? I'm going there for my first appointment on Monday, been told I've got ra after a positive rheumatoid factor test - and an inability to use my hands at the moment cos of pain! we should meet up! Grin

sashh · 10/05/2014 07:47

I was on sulphosalazine for a while and then methotrexate for about 10 years.

I had quite a lot of side effects, I basically had to write off the day after taking it due to being like a zombie and throwing up. It did get less but I always had the zombie day and that's why I stopped (in consultation with rhumatolagist).

My dad on the other hand doesn't get any side effects.

You won't know about any side effects until you take it, I hope you are like my dad and have no side effects. Good luck.

Oh and I also have psoritic, until last year I had never met another person with the same condition then I met two within a couple of weeks.

RandomMess · 10/05/2014 07:57

Dh has PA and took metho for around 9 months, fortunately after that he improved and hasn't had to go back on it.

He took a while to get used to it but didn't find the side affects bothered him much, although he doesn't like alchohol Wink

I assume they've checked your Vit D level, it's one of those things that they should rule out as making your condition worse.

RandomMess · 10/05/2014 07:59

I've just remember the day after he took it he used to sleep lots, but he is the sort of person that medication does really affect him and if he's unwell sleeps loads. Nowt seems to make me sleepy!

I guess you just have to try it for a few months and see how it suits you.

wonkylegs · 10/05/2014 08:13

I've been on MTX for over 10yrs now for RA (20mgs) it's been a good drug for me. I get hardly any side effects up to 20mgs but when we tried to up it to 25mgs I was terribly nauseous. It was a brilliant drug for me until I had DS and then when I went back on it (you MUST come off it to for TTC/pregnancy as it can cause serious birth defects & miscarriage) it wasn't as effective so now I supplement it with Humira (a biologic - don't ever read the side effects on that one, they are truly terrifying).
You take folic acid as MTX depletes your natural intake of folic acid so you need to supplement it. (One of the reasons you feel nausea)
Blood tests should start at every 2 weeks, then monthly, 6weeks & then when you are stable every 2 months.
If you tolerate the drug the blood tests are essential to pick up any of the nastier side effects quickly to avoid problems. You also are unlikely under prescribing guidelines to be able to get your prescription unless you are getting regular monitoring.
Most RA drugs are pretty serious but so can the disease be if it rages unchecked. If monitored properly MTX is a very effective drug that works well for many people.
Hope it works out ok for you

wonkylegs · 10/05/2014 09:19

I also meant to add I drink with mine just not excessively.
I stopped whilst my body got used to being on the drug but once I'd been on it for a bit I had the odd glass of wine/ G&T and I'm ok. My specialist nurse says it depends on the person how well they will tolerate it so they recommend not drinking to be on the safe side, but most people can tolerate the odd glass or two, just no binges.

BeyondTheLimitsOfAcceptability · 10/05/2014 09:20

World lupus day today.

My bff from high school has recently been diagnosed with it. What are the odds of two good friends being perfectly healthy, and then both devloping similar illnesses and being disabled before 30? Something in the water?? Confused

Anywho. So there are people on this thread who are on dmards and not ill? So if i say to the rheum, i want to try something else, i cant deal with being this ill, they cant write off my opinin with it being a chemo drug and therefore inevitable to make me suffer?