Methotrexate

Bookseverywhere

I haven't posted here for a long time. My apologies that my first post in over a year is to ask for advice.

Last week I had an appointment at my nearest Rheumatology clinic. Over the past few months pain has been getting gradually worse (after being okay even when I came off steroids). The consultant at the rheumatology clinic wants to put me on Methotrexate. I don't want to go on this drink. I enjoy a glass of wine or two with my evening meal, and I understand that because of the side effects of Methotrexate I will no longer be able to do this. Given that I have already had to give up some hobbies (cycling, hill walking, mountain climbing, golf) because of arthritis, I told the consultant I would rather continue with a moderate amount of wine with my evening meal.

I asked him if there was any other treatment beyond the pills I'm already taking. He told me that there were further treatments, but that the rules in Scotland state that he must prescribe Methotrexate before trying these other alternatives. Is this correct? Does he have to prescribe Methotrexate before trying other things? And what other options are there? I also have ostioarthritis as well as rheumatoid arthritis.

Thanks in advance for any information.

Best wishes,
Kevin.

scattered

In order to graduate up the med ladder you have to have tried methotrexate (MTX) plus at least one other DMARD. The difficulty you may have is that the majority of our meds are processed in the liver so drinking excessively on them will increase your risk of side-effects, regardless of what medication you take. That said, you can drink on MTX, just not excessively. Some consultants say that you absolutely cannot, whereas others are fine with some alcohol.

If you take MTX it could give you a lot of your old life and hobbies back, but you might have to cut down on the amount you drink. It's about weighing up the balance for each individual person. If you don't treat the RA it will cause joint damage, and may cause other problems in other areas of your body. Is giving up the extra glass of wine worth the future disability for you? Only you can make that decision.

Take care.

Bookseverywhere

Thanks for the reply. However, I am not talking about excessive drinking, but moderate drinking. Also, I simply do not believe there are any silver bullets that eliminate the arthritis, just medication that controls it.

I am happy to make, indeed have made, adjustments to my life style. I am not prepared however to take something like Methotrexate which seems to have major side effects, even worse than the side effects of steroids.

I am currently on a cocktail of medications for both rheumatoid and ostio arthritis, including Sulfasalazine and Leflunomide (plus some others whose names I can't recall - I'm typing this at the office) and bi-monthly injections.

I have been told off-the-record by a nurse that I could ask for infusions. One thing I am sure about, Methotrexate is not for me.

Best wishes,
Kevin.

trepolpen

hi Kevin , not sure rules in Scotland but in England we have to try two DMARD which normaly include Mtx ,its a realy good drug for RA & been on it 15 years , you can have the occasional drink on it & dont have to be tea total but it can cause cirrhosis of the liver & which is why they do monthly blood test to check ALT levels ( inflammation of the liver )

if your ALT is high they will stop Mtx before getting liver problems & after you tried the drug they can give you the newer bio drugs so for that reason its worth trying

Bookseverywhere

Thanks for that reply, which is helpful and has given me something to think about.

Best wishes,
Kevin.

ichabod6

Methotrexate is not totally compulsory if special circumstances apply.
Refusing to give up booze is not one.

scattered

Hi Kevin,

I'm sorry if my post came off critically, it wasn't meant to! If MTX isn't for you then you've made the right decision, but NICE guidelines usually say you must have at least tried it to move onto bigger meds.

I take MTX and have taken all the meds you're on at some point in the past. I'm not the biggest fan of MTX and if I had my druthers I wouldn't take it but one of the conditions of my other drugs is that I have to because guidelines say it works best in conjunction with them. In terms of side-effects, they are about the same as leflunomide (in fact, some studies have shown that leflunomide causes more serious side-effects than MTX, as I certainly found to be the case) and it has about the same efficacy rate as well.

I didn't mean to imply that I thought you drank to excess - I don't think that at all - I merely meant that MTX causes problems when people do drink to excess, rather than moderately. I should think the majority of people on MTX do drink moderately and have few problems.

I hope this has clarified some of what I said on my previous post.

Best wishes,
Scat

Bookseverywhere

Thanks for that. When I am finally offered it, I think I will take it and see what happens, but the medics will know I don't like the idea - but can't do any harm to try it, particularly with regular liver tests. Incidentally, NICE guidelines don't apply to Scotland. One very positive thing about the NHS in Scotland (and Wales and Northern Ireland, I think) is that all presriptions are free for all. Given that I am currently on eight different prescribed drugs, it would cost me a lot of money if I had to pay for the prescriptions. I'm not sure how people in England who aren't eligible for free prescriptions and who need multiple medications actually manage!

Best wishes,
Kevin.

dreamdaisy

Those few who have to pay for meds buy something called a prepayment certificate (currently £104.00) which saves a bundle of money as costs are rising to 7.85 per drug as from 01 April.

Alas and alack, generally one does not get to go straight on to the 'luxury' meds until some trial and error has been undertaken with the comparatively 'cheap-as-chips' meth etc. I spent four years or so failing on sulph, meth, leflunomide and cyclosporin (in various combinations, sulph being the constant) before I was granted access to the Holy Grail of anti TNFs by which time it was too late for anything of any note to be achieved.

I doubt that any of us on here who are faced with these drugs are happy about them - except for those for whom they work. Who knows, you may become one of that elite group. DD

pot80

I was so impressed with the consultant that I had no hesitation in taking methotrexate and although I've only been on it for just over two years I am very happy with it. I was put on a max of 10 units alcohol/wk. and have now got quite used to it - we try to substitute quality for quantity (although it was never high in the first place). I too enjoy walking and any problems that I have,providing I am not having a flare up, are due to age (79) and not RA.
I have given up one or two activities - woodturning due to stiff and painful fingers being one. However all in all I just hope that I am able to stay on methotrexate.

joanne66

i just wanted to say I too am on Metha and it works well for me, in fact gave me a good quality of life back. give it a go, if it doesn't work for you at least you'v tried. and yes i too have the pre-paid prescription card..well worth it.

wynnie

hi there ,im from scotland and on methotrexate ,i was offered the biological drugs but havent taken taken them but i was offered them only after ive tried other meds ,when i was talking with the rheumatology nurse they said drinking was okay but in moderation and try not to overdo it when i was due blood tests ,i do appreciate what your saying rheumatoid arthritis ect have robbed us of things we like ,for me its nice shoes ,vain but true i hate going out now for i was always a high heel, nice shoe girl ,now im in the ugly shoe brigade with horrid trainers ,cant remember last year i wore a dress or skirt ,it affects us all in different ways and thats my thing the shoes ,so i do appreciate yours is your little wine with dinner and why not if thats what you like id take the methotrexate ,im personally not a lover of it and i wouldnt say it helps flare ups that much but they are less than i had before ,somethings better than nothing ,good luck with whatever you decide and you have your tipple if thats your thing .....

williamlargs

dreamdaisy wrote:

Those few who have to pay for meds buy something called a prepayment certificate (currently £104.00) which saves a bundle of money as costs are rising to 7.85 per drug as from 01 April.

Alas and alack, generally one does not get to go straight on to the 'luxury' meds until some trial and error has been undertaken with the comparatively 'cheap-as-chips' meth etc. I spent four years or so failing on sulph, meth, leflunomide and cyclosporin (in various combinations, sulph being the constant) before I was granted access to the Holy Grail of anti TNFs by which time it was too late for anything of any note to be achieved.

I doubt that any of us on here who are faced with these drugs are happy about them - except for those for whom they work. Who knows, you may become one of that elite group. DD

Hello my good friend I'm still looking in. I would contribute to the above thread but just had a blood test so saying nothing x

Bookseverywhere

Fortunately, because I live in Scotland, I do not have to pay for my presriptions. I would encourage those of you living in England to campaign for English people to receive the same as we do in Scotland, and I think Wales and Northern Ireland.

Many thanks to all who have replied to my initial post. The comments have been very helpful.

Best wishes,
Kevin.

dreamdaisy

Willliam! Are you still doing disgustingly well on minimum or no meth? I jolly well hope so. It's lovely to see your name again, I hope that all is as well as it can be with you and yours. DD

williamlargs

Hi DD still well thanks, so far so good. Hope you are feeling better xx

Kevin

Sorry for breaking into your thread with some chat between old friends. I was on Meth for 2 and a half years and was recently taken off it as for the time being my RA is in remission.

As far as alcohol is concerned a couple of glasses of wine now and then should be OK as long as you keep going for your blood tests.

Good luck

Bookseverywhere

Chat between old friends is good, so need to apologise. Good to read such chat.

Best wishes,
Kevin.

dreamdaisy

You've been missed, Kevin. We put a birthday thread for you on CC recently, hoping you might be looking in! I hope all is as well as it can be with you and yours.

As for me young William, well, I continue the gentle slide into physical obsolescence at a nicely steady rate. DD

Bookseverywhere

DD, Sorry I've not been here for a while. There's been a lot going on in our lives, but I'm pleased to be back.

Best wishes,
Kevin.