starting on methotrexate !!

lynnmick

Hi everyone,

Been to see my rheumy today and to my dismay he has decided to put me on methotrexate combined with my plaquenil, the reason for it is, i have been taking the plaq for over a year and my joints are still deforming so obviously it wasnt working has efficiently has he thought it would. He has taken a chest x ray due to the fact that i have had pneumonia and pleurisy in the past, and i am also slightly asthmatic, and i have to have a breathing test before i can start the meth ( has anyone ever had this test and what does it involve ? ). So it will probably be in around 4 weeks when i start it. He has given me a leaflet and i'm trying to get my head around the possible side effects, will it be alrite to still have a couple of glasses of wine now and again, i'm a bit worried about drinking with the meth. I do hope that it works and stops the joint deformity has i'm only 48, so still quite young.

Thanks
Lynn

ruby2

Hi Lynn
I was given those tests recently before starting meth I think its pretty standard, and I didnt have any previous chest probs.
The breathing tests was blowing into the tube in three different ways, 1 was a strong huff....and continue blowing for as long as you could, 2 was blowing like blowing out birthday candles 3 was some other specific way which I cant remember all were very similar. It took about 5 minutes in all nothing to worry about. I had the chest xray as standard too.
I was on plaq and sulfa too.

The meth wasn't for me unfortunately although I did get some benefits in the joints and the PSA.

Good luck with it all ...it may be fantastic for you.

stickywicket

Meth and plaquenil are a very common combination, lynnmick. I've been on them for over 10 years. I have very mild asthma too.

I think the chest X-ray is standard proceedure before meth.

Hopefully, you, like me, wi ll have no side-effects. However, I hope you've been prescribed Folic Acid to take once or twice a week as that helps to avoid them. Also, always take your meds with food.

Alcohol is a bit tricky. Meth can affect the liver, which is one of the things that the regular blood tests monitor. Some docs say avoid alcohol altogether but most seem to advise moderation ie one or two glasses of wine per week and none on meth day. However, until you've been on it for a couple of months or so, and are sure, all is well, it'd be best to abstain completely. I do confess that, having near perfect liver function tests every time, I do like my glass of wine with my evening meal and, if I'm out, more :oops: But I make sure I have my dry days too.

I hope the meth works well for you.

prefabkid47

Hi Lynn
I have been on methotrexate (12.5mg weekly + 5mg folic acid 24 hrs later) for about 10 years.
To date I have suffered no side effects and has given excellent control of my RA (in ankle and hands),in fact today have been out on a fairly physical archaeological dig.Although some people do suffer some side effects many don't!
As to drinking,I regularly enjoy a pint or a whisky although don't have anything on MTX day!
Hope all goes well for you please kep us posted!
Regards
Ron

stickywicket

prefabkid47 wrote:

As to drinking,I regularly enjoy a pint or a whisky

I did a double-take there, Ron. First time round I read it as 'a pint of whisky My first reaction was envy

CJHunter

Hi Lynn,

Been on Metx in past and after 4 years was taken off it due to constant mouth ulscars. I too had chest xray b4 starting the meds and have been told you are suppossed to hav one every12mths as a precaution (not sure if this is correct). It did help me until i got this reaction.
Good luck with it, make sure you go for regular blood tests.
I did have the odd glass wine and still do although am on various meds.

I too though it sounded like pint wiskey, wow I thought then re read,

Hope all goes well xx

Numptydumpty

Hi Lynn,
I've been on Meth and Plaquenil for about six years now. I do get a few mouth ulcers and upset stomachs from the Meth, but that's usually worse when I try to increase the dose to 30mg.
I still have a drink when I want one, but not every day,(honest). My liver function tests have always been fine. Of course everyone is different.
I wish you well with it,
Numpty

Ha ha I'm a member of the pint of whiskey club

refereerick

Hi Lynn,
I'm in a similar boat to you being 41. I should be going onto meth in the next week or so if my final blood test (being done today) comes back ok. The old liver has been a problem for me as its not been perfect so I had chest x-rays and ultrasound scans first. I'm actually looking forward to getting on the meth, alcohol doesn't really bother me and after the agony i've been in since this suddenly came on 8 weeks ago, i'm just looking for some relief.
Good luck with the meth and the future, I hope it does what its meant to do for you.Take care, Rick x

DebraKelly

I have been on Meth since I was diagnosed 3 years ago.

First on tablets and now on injections.

Everyone reacts differently, but the only major side effect for me was upset tummy and tiredness for about 4 weeks at the start of the treatment.

I occasionally still get an upset tummy (have got one at the moment) and tiredness is part of the course with RA but Meth is a great drug and its made my life so much easier.

I got a chest extry before I started on the Meth its normal.

Hope you get on ok with it.

LignumVitae

Hi,

Not much to add - I too have used MTX and found it wonderful. Moved from pill form to injection which reduced some side effects and meant a 30mg dose could keep most things at bay, I did have to increase my folic acid to 4x a week but that meant the inevitable mouth ulcers reduced considerably. With the drinking, I did have a drink and my doctor reassured me that unless I was on regular benders, with my liver function as good as it was, all would be well. That said, I sometimes get a bit queasy with it so watch what I drink - somethings seem to slip down easier than others but that could just be me! I introduced alcohol slowly at first - starting with shandy and then going for the hard stuff (still not managed that pint of whisky though) that might have been useful but may not. I am asthmatic too (interestingly in the US they are researching a link between immune based arthritis and asthma as it appears asthma could be a precursor indicator for arthritis). I managed to get a pneumonia injection which is active for 10 years once when I went for my flu jab because I was on the MTX and had asthma so worth considering if it hasn't been offered already.
Good luck. I hope it works! xx

debsmartin

Hi lynnmick

Again not much to add but I have been on methotrexate for 2 years now (15mg a week), it has worked really well for me with the day I take my tablets being my only yukky day. As regards the alcohol my doctor said to be careful and drink in moderation so I have a few beers on a weekend and sometimes an odd glass of wine or two and touch wood I have been fine.

Hope it works well for you too

debs

dizzybizzum

Hi lynn
I found ur post and replys received very informative. My consultant has reccomended going onto MTX also and I did what every normal person does and googled it.... Bad move as I got myself all worked up about side effects and all the rest!!
After hearing from people on here, a lot of my fear were put to rest and I am lucky to have a fantastic Dr who has great patience.
So, all going to plan, I'm starting MTX next week.

The Chest Xray is standard. Up here, the breathing test is only done if u have had broncial problems in the past as far as I'm aware and I'll b subject to fortnightly blood tests for liver function.

I've decided to go completely Tea Total as I'm not a big drinker and have just done a year with no alcohol because I was preganat and never missed it!!

Good luck xx

lincolnshirelass

Hi Lynnmick,
I was diagnosed with aggressoive RA in August 2010 & my rheumy put me on Metho straightaway (12.5mg rising to 20mg over a 5 week period, taken every Friday) + Folic Acid (5mg on a Monday). He said Metho was the gold standard for RA treatment as long as you can tolerate it - some people can't but loads more can.

The chest Xray is normal procedure before going onto Metho & you should have regular blood tests (Full Blood Count + Liver Function Test) every 2 weeks for about 3 months, then every month for about a year, then every 3 months if readings are steady. You should also have a ESR/Creatine blood test every 3 months. I have the blood tests done at my GP surgery & mark the results down in a book the Hospital gave me, this means you can monitor the readings & contact the rheumy if need be.

You might be given another drug to take too once your body has adjusted to the Metho - I started on Sulfasalazine daily about 2 months after starting Metho. Between these 2 drugs I hope to keep the RA at bay for as long as possible.
Within 3 months of starting on Metho there was a marked improvement in my fingers/hands & at my last check-up the rheumy was really pleased as progression has definately halted.

You can get side effects with Metho but then so has all medication to some extent - I found that on Sat & Sundays I felt nauseous but now take an anti-sickness tablet which stops that feeling (it just dissolves in the mouth) I'd sooner cope with this side effect than stop Metho & have the RA get worse.

Metho isn't a pain killer though, so you may need to take pain relief too. I was on Diclofenac + paracetomol before starting Metho but now only have to take it very occasionally if I've overdone things eg carrying things that are too heavy for my wrists to cope with, also I only get a slight flare up now & again these days - so much better than the constant pain I had before.

I would say definately give Metho a try for a few months as it'll take at least 3 months for you to see much difference

Good luck

dizzybizzum

I picked up my perscription today, so am 10mg once a week (I chose a wednesday as that and a thursday is my quiet days) and have folic acid to take 3 days later. I on weekly blood tests until they get the MTX dosage sorted out.
Painkiller wise I was on tramadol and paracetamol but have come of tramadol because of migraines and am now on dihydrocodine
I'm finding that asking is the best way of finding out! Even if I need the same thing explained a few times.

X

buffycat

I stopped drinking completely when I started on MTX when I was 24. Apart from my student days, I'd never been a big drinker. I just didn't want to add anything else to my medical status....and to be honest, I'm healthier without drinking, and maybe a little better off financially?!

Personal decision really, but you should be monitored frequently, and if your blood tests show anything strange,you will soon get a phone call.

x

lynnmick

Hi everyone,

Thanks for all the great replies, i am certainly going to give it a go even though i'm absolutely scared stiff, i too googled it and didnt like what i read, it certainly is a poweful drug but on one site they mention it has an warrior against RA.

Starting from tea time last night i have felt so very c**p, i've got a really bad muscle spasm in my neck, and it really knocks me down, i have them quite frequently due to the RA .Have applied heat and taking a good dose of Naproxen to go to bed. Hope it miraculously disappears for in the morning has it does depress me.

Thanks for your comments again

Lynn x

stickywicket

Oooh Lynn! Remember the 11th commandment - Thou shalt not google. Not illnesses anyway.

I hope you'll soon join the ranks of us meth-lovers.

lynnmick

i know sticky sometimes i just can't help myself, i'll have to pack it in lol

Lynn x

Mat48

Hi - just to say that I've been on MTX and Plaquenil for 8 months and my RA has got much better but I feel increasingly yiucky a lot of the time - but I take antiemetics and they do make a difference. I have found that both times I've succumbed to a few drinks I've had a phone call from my GP saying my liver function tests have been raised and to move back down a dose. It's taken me this long to get up to 17.5 so I'm now 100% teetotal but that's just me and I've learned the hard way that any booze at all is a step too far for my body now. Good luck! Mat x

lynnmick

thanks for that Mat, i will have to just try and see if its possible for me to tolerate a couple of glasses now and then, mainly i have a drink if i go for a meal with my hubby. If however i do have a phone call regarding liver function i would of course go tee total like yourself. I hope that i dont have many side effects from the meth i cant stand feeling nauseous, are you taking folic acid as well, is that the antiemetics that you mention, as they are supposed to get rid of the side effects of the meth arnt they.

Lynn x

Mat48

Oh I can't call it Meth Lynn - the very thought of Meths makes me gag if I think of that purple stuff and I also always think it makes it makes it sound like something we should have to lurk on street corners for!

MTX (my preferred abreviation for Methotrexate) and me were fine together until my dose was raised 6 weeks ago. Since then I've been having a hard time with nausea and fatigue and really not functioning very well. It could be the combination of Hydroxichloraquine with 17.5 mg MTX or it could be just me, I don't know, but whatever I'm feeling lousy after 7 months of being perfectly okay on the MTX apart from a day of tiredness and feeling a bit low after taking it. On the plus side it has worked brilliantly on my joints so I'm in hardly any pain these days.

Honestly I think abstaining from alcohol is the least of our problems but then I was never a big drinker to begin with. I'm sure you'll be fine on it. Mat x

Mat48

PS and yes I have tried upping my dose of folic acid and it makes no difference to me. My anti-emetic is good but it makes me drowsy so I can only take it at night and even then I feel more woozy in the mornings after taking it. Hoping it will settle back down or else my rheumy might persuade my GPs to let me take it by injection - which for some reason they are horrified by as an idea?!

lynnmick

LOL ok i ll call it MTX instead , never thought that it sounded a bit druggified
I hope that you start feeling better soon, its not nice to feel sick all day is it.
I hope they start me on a really low dose, and that it works.

Fingers crossed
Lynn x

Mat48

Hey please don't go by my experience Lynn. I was fine, actually really well, on 15mg. It was only when my rheumy pushed me up to 17.5 six weeks ago because I was still flaring occasionally and had a constantly swollen ankle and consistently high ESR that I went bottoms up (in every sense!) - but lots of people tolerate it right up to 25mg so expect to feel fine and you probably will. Mat x

dizzybizzum

Hey Lynn
I started my MTX today, first dose down this evening! Will report back to u how I get on. I've been started on 10mg

I don't like seeing or calling it meth either as that has druggie connitations - working in certain jobs colour ur views (especially with children that have come from backgrounds where substances are abused)

It seems my steroid injection is wearing off how long have others experienced some relief from them? My fingers and elbows have been particularly bad today. And of course the lovely wet scottish weather doesn't seem to be helping. Wonder if I can convince Mr Dizzy to move to sunnier climes lol
Best go or it'll b time to feed tootie and I'll not even have been to sleep
Take care xx

dreamdaisy

Hello dizzy, me and steroid injections don't have that good a relationship - three days of slightly improved dross was all I gained. :roll: Everyone is different in how they react and in how long they last - is this your first lot?

Good luck lynmick, I'm on the injected version and I'm fine with it. I hope it works for you, please let us know how you get on. DD