Methotrexate...

jennac

Hi everyone,

Before xmas i was given mtx to start but i came home and looked on the Internet (stupid i know) am i saw so many bad things about it causing cancer,Damaging Liver etc.. etc...and my partner and family really didnt want me to take it.

I went back to my specialist and told her i wasn't happy so was told they would give me Leflunomide so was given a month to think about it.
Well today at my appointment with the nurse my specialist came in and sort of talked me into tryin mtx she said she wasn't trying to bully me into it but made it clear she wanted me on the mtx.

Anyway am going to start taking it Saturday evening,My partner is not happy that Ive been talked out of the Leflunomide and my family are really worried.

Can anyone give me any advice or reassurance?Or even tell me what you views where on mtx before starting it. Thanks x

annie_mial

Hi there, I have bumped up a previous thread regarding MTX for you - lots of us were very reluctant to take it, but so far we all seem to be glad we did. I've been on it since late October, up to 20mg, minimal side effects and last couple of weeks I've been moving much more easily.

Am having to miss a dose due to being on Antibiotics for a throat/ear infection and I don't want to!

Annie

salsal

mxt is used to treat cancer but in much, much higher doses and its those big doses that the side effects often occur. as arthritis sufferers we take much smaller doses of it and its primary use is to prevent damage to our joints with the bonus that it can ease our pain. i take 22.5mg 9 tablets just before bed and am fortunate not to suffer any side effects if there were to be any i would sleep through most of them :P
try to stay positive and either take them at bed time or before an activity at home that engages you if you take them and expect the worse side effects you will imagine all sorts!
the routine blood tests would detect any liver damage before it became a problem stopping the tablets would usually reverse any damage after a little while.
good luck with what ever you decide to do.
i used to refuse all medication but now i take all sorts :shock: and am much more mobile and pretty much pain free just quite stiff

jennac

Thanks for the replies.

Am going to start taking the mtx on Saturday Evening so i have Sunday to relax and recover IF i have said effects.

Will let you know how i get on x

lindalegs

Hi Jennac,

The others have said it all really. I've been taking Mtx for over 18 months now, only a small dose of 10mg tablets and it's worked wonders - I did have a few side effects in the beginning which have settled down and are now non existent.

I wish I'd have had it 24 years ago when I first started with RA because my joints would not be as deformed as they are now.

You will be closely monitored and if there are any adverse signs in your bloods you will be stopped from taking it.

Let us know how you go on.

Luv Legs

jean49

Hi, I'm new to this site and have never posted on any site before, so hope I'm doing it correctly.

I've had RA for about 10 years and have been on Sulfasalzine. Over the past few months my hands have been very painful and lumps have come up on both hands. When I saw the RA specialist a few days ago, he suggested I change to Methotrexate.

I did the same as Jenna, looked it up on the internet, and became unsure if it was a good idea to start it. After looking at all the posts regarding Methotrexate, I feel a lot better about it, so will probably go ahead with his suggestion.

Thank you all for easing my worries.

Jean.

englishrose

I hope I can help reassure you. I have been on MTX for about 8 yrs. At first I did feel a little unwell the next day but very soon that passed. I now take it and have no problems at all. As others have said, your blood test results are monitored most carefully - put your trust in the experts. Good luck, hope it works well for you.
Jane

jean49

englishrose wrote:

I hope I can help reassure you. I have been on MTX for about 8 yrs. At first I did feel a little unwell the next day but very soon that passed. I now take it and have no problems at all. As others have said, your blood test results are monitored most carefully - put your trust in the experts. Good luck, hope it works well for you.
Jane

Thanks for your reply Jane.

Jean.

marielys

I am supposed to start taking Methotrexate on Saturday too. Like you, I delayed this treatment for so long and I must admit then even today I am scared! I have been suffering from a stomach ulcer, due to my intake of cortisone and anti-inflammatories for almost 18 months and Arcoxia since last June. At the beginning Arcoxia worked well, not anymore though.
I am glad i came in this forum, you have given me hope :P ! The weird thing is .. my rheumatologist told me to take the metho in the mornings. I live in Belgium now, so everything seems to be different here.
It has been a long fight beleive me, so many mistakes were made by specialists here i.e. during a very bad crisis giving an injection of cortisone without extracting the liquid from my swollen knees for lab testing, for instance. I do feel very lonely and lost most of the time. Thank you all in advance for your support.

lindalegs

jean49 wrote:

Hi, I'm new to this site and have never posted on any site before, so hope I'm doing it correctly.

I've had RA for about 10 years and have been on Sulfasalzine. Over the past few months my hands have been very painful and lumps have come up on both hands. When I saw the RA specialist a few days ago, he suggested I change to Methotrexate.

I did the same as Jenna, looked it up on the internet, and became unsure if it was a good idea to start it. After looking at all the posts regarding Methotrexate, I feel a lot better about it, so will probably go ahead with his suggestion.

Thank you all for easing my worries.

Jean.

Hi Jean49

Just wanted to say Hello and welcome.

It's good to have you posting

Luv Legs

joyful164

Hello Jean49
First of all, welcome to the forum. I hope you will find a lot of reassurances on here about your proposed MTX treatment or any other problems you want answers to.
Firstly, don't worry about MTX. It's a very reliable drug and was initially used from the mid 60's to treat various kinds of cancer including breast cancer.
The dosage you are going to have will be so minute compared to the amount used for dealing with cancer. They discovered that MTX was beneficial in suspending various forms of Arthritis. I'm sure the Helpline Team will send you some information about all this.
You will also have regular blood tests and your nurse will be keeping a close eye on the progress. Just remember to take your folic acid regularly (I normally take a folic acid every day except from the evening before my MTX injection and 24 hrs after. If you take the folic acid at the same time then it will stop the benefits of the MTX. At the same time, you will need to be patient with regards to feeling any improvements. It can take weeks.

All the best and hope you get on alright.

Joy

lizzie7ne

Hi, I have been on Methotrexate for 14 months now. Leflunomide was added in June 09.

The thing to remember is that there are side effects to all drugs even paracetomol. Its also worth remembering (this is what my Rheum said to me) that RA not treated fully can have some pretty awful effects.

I think, but maybe I am wrong that Methotrexate has been used to treat RA for quite some time now with good results.

Its worth remembering that when you are taking Methotrexate you have regular blood tests and if anything showed up in your blood
which indicated Methotrexate was having an adverse affect on you then it would be stopped.

When I first started Methotrexate I did have nausea for a few weeks and it was 8 weeks before I felt any benefit. Now although I am more fatigued the day after I take it that is the only side effect I have.

Good luck

lizzie

jean49

I sent my first post at 1.04pm today and have had messages from 5 people. It's good to know other RA sufferers make time to read posts and give encouragement to a newbie like me.

Thank you Marielys, Legs, Joy and Lizzie.

Jean.

jennac

Thanks for all your messages.

I feel really reassured and feel i am ready to start MTX on Saturday.Thank you all so much its so Nice to have other people to speak to in the same situation.

marielys goodluck with starting yours Saturday too x

lindalegs

marielys wrote:

I am supposed to start taking Methotrexate on Saturday too. Like you, I delayed this treatment for so long and I must admit then even today I am scared! I have been suffering from a stomach ulcer, due to my intake of cortisone and anti-inflammatories for almost 18 months and Arcoxia since last June. At the beginning Arcoxia worked well, not anymore though.
I am glad i came in this forum, you have given me hope :P ! The weird thing is .. my rheumatologist told me to take the metho in the mornings. I live in Belgium now, so everything seems to be different here.
It has been a long fight beleive me, so many mistakes were made by specialists here i.e. during a very bad crisis giving an injection of cortisone without extracting the liquid from my swollen knees for lab testing, for instance. I do feel very lonely and lost most of the time. Thank you all in advance for your support.

Hi Marielys,

I take my Mtx with my breakfast on a Tuesday morning......that's because I like a glass of wine at the weekends.

Don't feel lonely anymore because we're here if you need us.

Luv Legs

marielys

Hi Legs :-) Thank you so much for your advice and your support. I was just wodering when to take Mtx during the meals or on an empty stomach. Since I have a sensitive stomach, its better to take it as you do : with breakfast. Your lovely words have touched me deeply, together with all the ladies comments and welcoming words to me :-))))))) Thank you All.

Luv,

Marielys


Hi Marielys,

I take my Mtx with my breakfast on a Tuesday morning......that's because I like a glass of wine at the weekends.

Don't feel lonely anymore because you're here if we need us.

Luv Legs [/quote]

jackie1955

Hi Marielys,

Ive only just read your posts, I havent been on here much this week.

I started MTX about 9 months ago, with no real side-effects. I take mine with my tea on Sunday - I take 8 tablets which I used to swallow one at a time lol! Now, middle of the way through my meal, I swallow 4 at a time

Apparently though, my MTX needs a bit of help in reducing the inflammation caused by the RA, so I have just started on Sulphasalazine AND Hydroxychloroquine..... eek! I used to hate taking one little aspirin!!! Ah well, needs must I guess :roll:

Good luck, and let us know how you go on.

Jackie x

jennac

jackie1955 wrote:

Hi Marielys,

Ive only just read your posts, I havent been on here much this week.

I started MTX about 9 months ago, with no real side-effects. I take mine with my tea on Sunday - I take 8 tablets which I used to swallow one at a time lol! Now, middle of the way through my meal, I swallow 4 at a time

Apparently though, my MTX needs a bit of help in reducing the inflammation caused by the RA, so I have just started on Sulphasalazine AND Hydroxychloroquine..... eek! I used to hate taking one little aspirin!!! Ah well, needs must I guess :roll:

Good luck, and let us know how you go on.

Jackie x

I have just took my first dose of MTX i am also on sulphasalazine and Hydroxychloroquine,Been on them two awhile now. X

I

countessheather

Well the good news is that you will be given a `low dose' and belive me my mate Lynn has been on this over 20 years and it has realy helped her! We all know that in larger doses this is used in `chemotherapy' for cancer patients, which are significant in comparison. Lets not kid ourselfs. All drugs have side-effects. The trick here is to find out `which ones' suit your body chemistry the best and give you the help you need. Lynn's side effect is that it `sometimes' makes her want to go to no:2 urgently, so she takes this on a sunday morning, when things are quieter. But that is not always the case and if her daughter asks her if she will go out with her, then they plan to go to lets say a `garden centre' that has toilets just in case. :oops: :roll:

simon123

Hi Everyone,

I'm 32 and have just been diagnosed with psoriatic arthritis and after 2 steroid injections and taking Arcoxia (90mg) for about 2 months, my rheumatologist and dermotologist want me to have counselling to go onto MTX. Unfortunatly, the steroid injections work, but obviously I can only have one more and then thats all for a while, and necause I have a hiatus hernia I can't really take a higher dose of Arcoxia. I'm really scared about going on MTX,I've read peoples reassurances on here but it is still of concern, also how often do you have to have blood tests, as at the moment I am notdriving due to the pain and my girlfriend has to take time off work to take me to appointments etc. I'm new to all this, could do with some advice, not just about this but also about exercise etc. Also, is there anyone around my age who is on here as I feel very alone, that no one my age seems to have arthritis, and I would love to be able to talk to someome about it who knows what I'm going through.

Thanks all!

Si

jennac

Hi I know its hard am only 24 and feel like am alone with this as no one i know my age has it .Its been great having this site as everyone here knows what am going through.

I took my 1st MTX last night and was terrified all night expecting something to happen but all good so far.

Hope you get things sorted soon

sarahbenn

simon123 wrote:

Hi Everyone,

I'm 32 and have just been diagnosed with psoriatic arthritis and after 2 steroid injections and taking Arcoxia (90mg) for about 2 months, my rheumatologist and dermotologist want me to have counselling to go onto MTX. Unfortunatly, the steroid injections work, but obviously I can only have one more and then thats all for a while, and necause I have a hiatus hernia I can't really take a higher dose of Arcoxia. I'm really scared about going on MTX,I've read peoples reassurances on here but it is still of concern, also how often do you have to have blood tests, as at the moment I am notdriving due to the pain and my girlfriend has to take time off work to take me to appointments etc. I'm new to all this, could do with some advice, not just about this but also about exercise etc. Also, is there anyone around my age who is on here as I feel very alone, that no one my age seems to have arthritis, and I would love to be able to talk to someome about it who knows what I'm going through.

Thanks all!

Si

Hi Si, im 34 and have RA and am also on mtx, been on it for quite a while now started off on 7.5mg and gradually went up to 15mg had some side effects to the mtx mainly very tired and sickness so back down to 7.5mg plus im now on sulphasalzine and hydro this combo seems to work well for me, i have a blood test every 4 weeks as i think most people do on mtx i also take folic acid every day except mtx day which also helps with any side effects. i think a lot of people are daunted by the fact of starting this drug but it does help with the condition i can only suggest that you give it a go and see how you feel, they do tend to start you off on a low dose and only gradually increase it if if needs be. Hope you feel better soon and dont worry you are not alone there are lots of people with arthritis on here who can help with advice.
sarah

page35

Hi Si and everyone else
i am 34 and have RA, started at 32. ive been on mtx about 7ms and it has helped me alot.
you asked about blood tests, to start with for the first 3ms you have to have bloods every 2 weeks, as i am a wimp and have fainted a number of times having my blood done, i was worried but the benifits out way it. anyway after 3ms you have bloods once a month then after a year i think its every 2ms, so it gets better

i wish all who are starting mxt the best of luck hope it helps you all

countessheather

Simon nice to here from you!
Mtx will help you regain your confidence and life back, such as driving your car. God, I could'nt survive at the moment if I had to `give that up' as well. Im not saying that as`seasond suffers' here, we have charmed lives. No, just that we will find that `the mornigs' are proberly best for us before we have to take a rest in the afternoon and have to `plan' our trips out more carefully, making sure that we `trade-off' an extra quiet couple of days after we have had a `trip' out some where inspite of the meds.
But what I am trying to say is that, it is worth trying to `preserve' your joints health (and your sanity) as much as possible before you find you have to strart the `rounds of replacement surgery' and have a life first with that girl of yours. Please try not to become `old' before your time son.
Heather xx

marielys

Hello dear All :-)
@ jennac : how do you feel after starting your Mtx ? I hope you had no serious side-effects like me. On Sunday i had a headache and felt a bit dizzy also my stomach was a bit funny. Nothing worse then that ! I am no longer worried about the drug.

@ simon 123, I am sorry to read about your age. I was on Sulphasalazine for about 6 months, it worked at the beginning, not after that. I am currently taking Arcoxia, also 90mg like you + Mtx.
Good luck to you both and to All of you :-)

simon123

Hi Everyone,

Thanks to all of you who have replied. It has made me feel a bit better.

Jennac – Thanks for your words of support

Sarahbenn- Hi, I’ve heard a few people mention Sulphasalzine, whats that and how does it differ to MTX? Thanks for your advice!

Collywobble – Hi, yes it seems a few people on MTX really do rate it for improving quality of life..........and movement! I guess it seems that I am lucky to be being given counselling first as it appears not everyone has been offered this. However, at the moment I am under the care of 3-4 different hospitals for different parts of my treatment so I get a bit unsure of where I am! I’m not keen on calling the helpline, mainly because I’m not good at that kind of thing, but maybe I’ll give it a go! Age really isn’t an issue for me, the issue was that I wanted to be able to talk to people, of any age, but especially people who are my age with regards to how they cope at this age. Your words are very kind, and I’m already starting to feel less isolated!

Page35 – Did you develop arthritis at 32?

Countessheather – Thanks for the post. I really was only supposed to stop driving for a few weeks after my spinal surgery last April, but as the complications started so my driving was put on hold, and as I live in a place with no real shops and the nearest shops being a car or bus/train journey, I feel very isolated and cannot wait to get back driving my lovely car! At the moment I feel tired so often which has resulted in a lot of missed evenings out or days at the rugby (my passion!). I have started the ‘trade off’ days, but my meds and pain are so mixed up at the mo, I have no real continuity!

Marielys – Thanks and I hope they will find something that works for me soon!

To all of you guys, I would love to talk more, so feel free to contact me as I could really do with the contact!

Take care,

Si