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Rank: Member
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Joined: 10/11/2010
Posts: 22
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Hi, I was finally diagnosed last week and am due to start taking 15mg Methotrexate on Saturday. I'm terrified as it seems like a large dose to start on, plus I have read some awful things about it. Can anyone give me any advice cos right now I'm thinking I don't dare take it! Thanks 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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hi,
I was on MTX for over three years and completely and utterly empathise with how worried you feel about beginning this med.
Firstly, I would double check the dose as usually MTX is titrated- you begin with 7.5mg and increase over a few weeks. the body needs time to adapt to it and this needs to be done carefully with monitoring the blood too.
So, ask the GP before you take it.
The thing with MTS is that it has been used now for so so long for RA that much is known about it and so this is good. It has been tried and tested and the Drs will monitor so so should any problems arise they will take you off it immediately, and these problems will dissolve.
It is also only used in 'small' amounts of RA- I know this isn't any real comfort yet compared to what some people have to endure it is very tiny.
That said, like all meds, it can be toxic and needs to be watched which they will do very cautiously.
Love,
Amanda
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Rank: Member
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Joined: 10/11/2010
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Hi Amanda, Thanks for that I feel a little happier about taking it now. However I will check with the rheumatology nurse about the dose. Heather
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Heather and welcome,
totally understand how you feel about starting Methotrexate.
i started it in June after being diagnosed and managed to lose over half a stone in a week with the stress of (a) being diagnosed and (b) having to take the drug !!
it took me 2 weeks to then start it, after seeing GP and ringing the helpline at NRAS for added re-assurance.
i have now just had my dose upped from 15mg to 20mg as so far it hasn't worked for me ... there is no quick fix unfortunately with controlling this condition. so i have another 4 weeks to give it before something else is probably added unless the drug finally works for me.
i agree with Amanda just check your dosage as i started on 10mg for a couple of weeks then built up to 12.5mg again for a couple of weeks before the 15mg.
but you do get used to taking it after the initial worry.
you will find a lot of support and information on here,
keep posting
Suzanne
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Rank: Member
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Joined: 10/11/2010
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Hi Suzanne,
Thank you for you're reply, it's nice to know that I'm not the only one that felt this way about taking the medication.
I was diagnosed last Friday and I've been a jibbering a jibbering wreck ever since. I will call the rheumatology nurse helpline today and check up on the dose.
Thanks again I really do appreciate it.
Heather
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Heather,
You are certainly not the only one to worry about starting on mtx, I think we were all horrified at the thought of it!
However, it is known as the gold standard treatment for RA and for many it has given them back their lives. As long as you have the regular blood tests you will be fine, anything untoward will be picked up quickly.
So try not to worry and just look forward to starting on some effective treatment to protect you from joint damage.
Good luck with it!
Love, Doreen xx
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Rank: Advanced Member
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Joined: 12/5/2009
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Hi Heather,I started on MTX back in May and was prescribed 15mg which I was worried about taking as it seemed a high dose to start with.After taking it for two weeks I came out in a rash on my arms.  Apparently the MTX had reacted with sunshine so the rheumy nurse halved the dose and I was OK after that.One thing I did notice was some hair loss but that seems to have settled down now,in fact when I last saw the consultant he dropped the dose right down to 5mg a week.I'm still taking Hydroxy as well and at the moment I seem to be doing quite well. As others have already said,you will be well monitored with blood tests,fortnightly to start with and then monthly if all is well.Try not to worry too much.As Amanda has said,I would check the dose and perhaps ask if you can start on a lower dose and gradually increase it. Brenda.x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Heather, I have taken MTX for three years, I also started on a lower dose of 7.5 and built up, I was given it as part of the triple therapy. Apart from a rash in the beginning I have never had any problems with it. Then I had to stop all drugs for a week and re-start them. But as you say I made myself ill before starting it, and I lost 5lbs in weight. Keep a diary thats what I did then you can monitor how you feel and how it affects you. You will get blood tests to check how it affects your system. I dont know how bad you are with RA but you have to believe it will make a difference, I was very bad back then, I could do very little for myself. Now I keep really well as long as I do not over do things. Im Lorna married to Ken and have 3 daughters, glad you have found the forum. You will not feel alone again we have all been there and know exactly how you feel. Keep positive you will get there. Lorna 
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Rank: Member
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Joined: 10/11/2010
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dorat wrote:Hi Heather,
You are certainly not the only one to worry about starting on mtx, I think we were all horrified at the thought of it!
However, it is known as the gold standard treatment for RA and for many it has given them back their lives. As long as you have the regular blood tests you will be fine, anything untoward will be picked up quickly.
So try not to worry and just look forward to starting on some effective treatment to protect you from joint damage.
Good luck with it!
Love, Doreen xx Hi Doreen, Thank you so much for your reply. I'll be starting the methotrexate on Saturday, will let you know how it goes. Heather xx
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Rank: Member
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Brenda-I wrote:Hi Heather,I started on MTX back in May and was prescribed 15mg which I was worried about taking as it seemed a high dose to start with.After taking it for two weeks I came out in a rash on my arms. Apparently the MTX had reacted with sunshine so the rheumy nurse halved the dose and I was OK after that.One thing I did notice was some hair loss but that seems to have settled down now,in fact when I last saw the consultant he dropped the dose right down to 5mg a week.I'm still taking Hydroxy as well and at the moment I seem to be doing quite well. As others have already said,you will be well monitored with blood tests,fortnightly to start with and then monthly if all is well.Try not to worry too much.As Amanda has said,I would check the dose and perhaps ask if you can start on a lower dose and gradually increase it. Brenda.x Hi Brenda, Thank you for your reply. It's realy helpful knowing that other people understand how I'm feeling. I phoned the rheumatology nurse this morning and she said that I need to take the 15mg dose from the start! still not sure but I guess I will have to go for it on Saturday! Will let you know how it goes. Heather x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Heather,
i think all Hospitals work differently ... so don't worry as the Rheumy Nurse has assured you she wants you to start on the 15mg, you have to somehow find faith that they are prescribing what they think you should be on.
i take it you are having Folic Acid as well, i take 10mg 2 days after.
good luck and let us know how you get on.
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Rank: Member
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Joined: 10/11/2010
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Lorna-A wrote:Hi Heather, I have taken MTX for three years, I also started on a lower dose of 7.5 and built up, I was given it as part of the triple therapy. Apart from a rash in the beginning I have never had any problems with it. Then I had to stop all drugs for a week and re-start them. But as you say I made myself ill before starting it, and I lost 5lbs in weight. Keep a diary thats what I did then you can monitor how you feel and how it affects you. You will get blood tests to check how it affects your system. I dont know how bad you are with RA but you have to believe it will make a difference, I was very bad back then, I could do very little for myself. Now I keep really well as long as I do not over do things. Im Lorna married to Ken and have 3 daughters, glad you have found the forum. You will not feel alone again we have all been there and know exactly how you feel. Keep positive you will get there. Lorna Hi Lorna, Thank you so much for your reply. I will do as you suggested and keep I diary so that I can monitor how I'm feeling. I too have 3 daughters, [only one still at home]. I also have 4 grandsons. I'm glad that you are now keeping well and thank you again for your reply. Heather x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Heather
I totally understand how you are feeling at the moment.
I had to add MTX to my medication a few months ago and I was worried too.
Since I was diagnosed just over two years ago I have read many posts on here and other forums about MTX and how people had reacted to it. When I was told to take it I was frightened after reading all of this. I did some research on other sites and came across an article on a site called RA Warrior (American) and after reading about MTX on there I decided to take it. It's on the homepage, across the top titled Methotrexate and RA.
I don't know if I read it on that site or somewhere else but 90-95% of people who have been DX with RA have been prescribed it, so I came to the conclusion that if so many people have taken it then obviously I would read more about side effects of the drug than I would of others. It doesn't mean that you have more chance of getting a reaction from it just that more people are taking it (I hope you understand what I'm trying to say). My RA nurse also said that before I would be considered for any of the stronger drugs (not that I would want to take them), I would of had to of failed on MTX before I would be considered for anything else.
Having said all of that I can still remember the day when I first took it. I sat there with them lined up, put one in between my thumb and finger, sat there rolling it about trying to pluck up the courage to take it. Obviously I did and the others in the row and then waited for something terrible to happen. Well, five months down the line I'm still waiting, because nothing happened, no sickness, nothing at all. At the moment I am taking 15mg on a Friday and one 5mg folic acid on a Monday. I have to increase my dose soon (after I have been on holiday), so here's hoping that my body still will be able to tolerate more.
Just want to add that I had to start on 7.5mg and then add another tablet evey week until I was taking 15mg. When I do increase my dose, again this will be done by adding one tablet each dose until I am at 20mg. I don't know if someone else has mentioned but I had to have fortnightly blood test done for the first 12 weeks.
Let us know how you get on.
Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Welcome heather! You certainly seem to have had loads of good advise there! Make sure that you are prescribed folic acid to take with the methotrexate-everyone is. It is nervewracking taking these things because we don't know what to expect but hopefully it will be the wonder drug for you! Just a tip-I take mine after a meal and with a large glass of water. Then I try to forget I've taken it and do little bits round the house to stop yourself thinking-"GULP I've taken it-now whats going to happen-how am I going to feel" etc! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Heather, Just a thought, take your MTX at night before you go to bed then if you are affected in any way you will be asleep. I used to find the sun a bother, 1. you burn easier use a high block sun barrier cream and 2. you can feel a bit sick also you may feel tired the day after. But thats a small price to pay to be able to move.  I have taken mine in the evening for years and only occasionally feel tired the next day. Its all a BIG learning curve and you WILL get there thats a given. I was ill the day I started my MTX but IT WAS SELF INFLICTED nothing to do with the tablets. The worry and stress caused me to be ill. so be positive we have all had this experience and come out the other side. GO U its now your turn and you will be giving others this support very soon. Be strong Lorna x
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Rank: Advanced Member
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Joined: 12/3/2009
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Hi Heather,
Can totally relate to how you are feeling, as when I was prescribed it nearly two years ago, I came on to this site to gain support and information. I can't remember the dose I started on, but it was eventually increased to 25mg along with other medications into the mix later, and two years on I have had no cause for concern. However once it was prescribed it was a few days before I could pluck up the courage to take them, and then waited another few days for something terrible to happen. I couldn't wait to have my bloods taken after the first dose, thinking that terrible things would also show there. I am happy to say neither happened. It is a comfort to know that the rhuematolgoy nurse and department are on hand if advice is needed, and they are very efficient in York and give a wonderful service. The regular blood tests ensure that if there are any problems, they should be picked up.
Do post to let us know how you get on.
Take Care
Candy
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Rank: Member
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Joined: 10/11/2010
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Hi Paula,
Thanks for your reply, I will certainly have a look on the RA Warrior website.
I'm sure that when it gets to Saturday evening I'll be sitting there with the tabs lined up just as you were. I will let you know how it goes.
Thanks again
Heather x x
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Rank: Member
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Hi Candy,
Thank you for replying, It is so reassuring to hear from others that understand how I'm feeling.
I'm sure that like you I once I've plucked up the courage to take them I will be sitting there waiting for something to happen!
Will keep you posted.
Heather x x
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Rank: Member
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Joined: 10/11/2010
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Lorna-A wrote:Hi Heather, Just a thought, take your MTX at night before you go to bed then if you are affected in any way you will be asleep. I used to find the sun a bother, 1. you burn easier use a high block sun barrier cream and 2. you can feel a bit sick also you may feel tired the day after. But thats a small price to pay to be able to move. I have taken mine in the evening for years and only occasionally feel tired the next day. Its all a BIG learning curve and you WILL get there thats a given. I was ill the day I started my MTX but IT WAS SELF INFLICTED nothing to do with the tablets. The worry and stress caused me to be ill. so be positive we have all had this experience and come out the other side. GO U its now your turn and you will be giving others this support very soon. Be strong Lorna x Hi Lorna, Thanks for the advice. Heather x x
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Rank: Member
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JulieM wrote:Welcome heather!
You certainly seem to have had loads of good advise there!
Make sure that you are prescribed folic acid to take with the methotrexate-everyone is.
It is nervewracking taking these things because we don't know what to expect but hopefully it will be the wonder drug for you!
Just a tip-I take mine after a meal and with a large glass of water. Then I try to forget I've taken it and do little bits round the house to stop yourself thinking-"GULP I've taken it-now whats going to happen-how am I going to feel" etc! Hi Julie, Thanks for the advice. I have been prescribed 5mg folic acid to take 2 days after the methotrexate. Heather x x
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