Coming off methotrexate

Scarlet

Hi everyone

I will try and keep this brief, well as brief as I can!
I am 25 years old, and about 6 years ago I was diagnosed with RA, after a fair few trips back and forth to various doctors. I was placed on sulfasalazine, which helped but I still had problems with my wrists, knees and feet. My consultant decided to put me on methotrexate about two/three years ago, 10mg a week.

I have to say that the methotrexate really was a bit of a wonder drug, some days you would hardly know I had RA. I have minimal pain, only first thing in the morning and if I overexert myself. I'm a full time student in my 2nd year of a uni degree and I also have a part time job in a clothes store, and I feel very lucky that I am able to continue as normal, especially reading some of the stories and experiences on this forum.

However I have to say that I am struggling with the monitoring involved when you take methotrexate. A monthly blood test doesn't seem that bad, and I have no problem with the actual taking of blood, its just motivating myself to pick up the phone and make that appointment. I have gone months at a time without having my blood taken, purely because I am so busy, I never get round to booking it. I have an appointment with the rheumatology nurse roughly every 3-4 months, and I see my consultant roughly once a year. Of course they get very angry with me, because monitoring is very important when you are taking a drug such as methotrexate. I do understand their position. I have no excuses, it literally is finding the time to go to the GP and have my bloods done.
I have to confess that I am also not so good at taking the drug, I have to order a repeat prescription every month then go and collect it, and I am terrible at getting round to doing it. So sometimes I will go weeks without even taking the drug!

This is a really stupid position to put myself in, and I know it might seem trivial and silly to some (apologies!). I just wondered whether anyone else has ever experienced anything like this? Has anyone ever just been SO fed up of this whole charade of picking up drugs and having tests every month!?! Last time I saw the nurse, she said that if I couldn't keep up with the monitoring then I should come off the methotrexate, which I would be happy about in all honesty! But my consultant is not keen for me to do that. But I would honestly like to be on a drug that I can have more than a months supply of (having to pay separate prescription fees for the mtx and the folic acid every month really gets my goat!!), and that doesn't require a monthly trip to the GP. But the consultant won't hear of it.

Are there other drugs that would work just as well? Or do I have to resign myself to this forever?? I'd really appreciate feedback and comments from others.....thanks :-)

skezier

Hi Scarlet,

Welcome to the forum though sorry you have had to find it. these lot are good.

I know what you mean but if mtx is working for you its would be better to keep it and maybe you could drop to 3 monthly bloods?

I hate remembering and yet manage to even if I have to grovel to get the prescription made up quickly while I wait....

the bloods they can never get out of me but I still take it , or rather now a days inject it cus it might for me work one day. If yours is working hang n to it cus there isn't anything they can give you that doesn't need monitoring I am afraid.

I know it can seem hard sometimes flower but its worth persevering if its working for you and I really hope you find it all gets easier again soon. Nice to meet you Cris x

tillytop

Scarlet!Scarlet!Scarlet!

Sorry to be so blunt (not like me but hopefully you will understand why in a minute).

You have RA which is a serious condition and without treatment you could end up permanently disabled and that will compromise your life more than just a blood test and picking up a prescription once a month.

Having found a drug which works for you, with no side effects, I think you would be barking to stop taking it on the basis of convenience.

Methotrexate is a serious drug which is why you need to be monitored carefully while taking it and why the doc usually won't prescribe more than a month at a time. The same is true for the other RA drugs. And speaking as someone who has taken many of the available RA drugs over the years I can tell you that ALL of them require monitoring - some of them more frequently than methotrexate. And for some of them, you have to go to the doc or the hospital to have them as well, which is even more of an inconvenience.

I think that, if you make a real effort to take the meth and to go for your blood tests and keep records of your results, you may find that the hosp will be happy to reduce the blood tests to three monthly - but they are obviously not going to do that unless they know you have things under control. If you are not good at remembering to book the blood tests, try booking the next one each time you go - or booking several at the same time. Then that's one less thing to think about.

Sorry to sound as if I am lecturing but, from your post it sounds as if I am only telling you what you already know.

On a practical note, have you investigated a pre-payment certificate for your meds? It may be that if you only have 2 prescriptions each month, it doesn't work out any cheaper but might be worth investigating. You can find the information by googling "prescription pre-payment".

One final thought - d'you think your reluctance to make the time for something so important could be because, deep down, you are struggling to come to terms with having RA? If that's the case, you certainly wouldn't be the first - it IS hard to come to terms with, specially when you are younger. If you think it would help, you could try talking to the Arthritis Care Helpline (number at top of the page). They are great listeners and may well be able to advise you.

Good luck!

Love Tilly xxx

julie47

Hi scarlet

welcome to the forum.

I do find it difficult and a pain to have blood tests but they must be done. It is a struggle for me so I now go every 3 months, perhaps you could do the same...as for not getting for your prescription could you ask the chemist to collect and deliver your meds to your home.
I request my prescription on line.

I am glad that the med is working well for you and I think you would be silly to stop it.

Take care
Juliepf x

dreamdaisy

Oh how I wish I was you! You are taking (when you remember) a med that helps to relieve your symptoms to such an extent that you forget you have the disease. How great is that? You cannot be bothered to do the blood tests as you are such a busy person - how wonderful must that be? Oh to have all that energy - I last had some energy in October 2001. You are young and obviously not that badly affected by the RA, which must be lovely. So, with that blind optimism of youth (or sheer stupidity of it, both fit) supporting you don't do the bloods, come off the meth, and live life as a young person should. There is one major flaw with this: you are a young person with a health issue of some import.

No-one knows how their version of this dross will develop. I think you are fortunate in that you have been diagnosed early and have found a drug that helps. I wasn't and haven't, despite trying a fair few and in a number of different combinations. Result? Washed up at 52, in permanent pain, multiple affected joints, injecting and swallowing all sorts of stuff to keep the medicos happy (but which don't really touch the arthritis), on crutches and planning to save up for a buggy. I could be you in 26 years time. But of course you cannot see yourself being like that because no-one can.

Right, now the stern words. You are wasting the time and care of your consultant, your rheumatology nurses and you should feel thoroughly ashamed of yourself. You won't though, you are getting away with it all and that will only fuel this cycle. There is little point in us telling you our warning tales of horror - they won't force maturity upon you, only you can be the one who has to grow up and start behaving like the adult you are. Me? I am grateful to be down to monthly bloods, three monthly will never be an option being as treatment-resistant as I am, yes it is a bind and a drag and a nuisance but I know that the doctors are doing their feeble best with their rubbish meds and I have a part to play too in trying to help myself.

In the long run you will only harm yourself. I wish you well. DD

keith1971

Can only agree with Tilly & DD

Perhaps you'll be one of the extremely lucky ones & the RA won't affect you badly at all, even over time.......but perhaps you should be a little more pro-active in trying to prevent any damage that may occur.

I ignored my own very light symptoms for nearly a year & now I'm paying for it as what started with one finger has now turned into a knee....and an elbow....and the other hand.....and my ankles....and my shoulder.....not to mention my jaw on occasion.

You found something that works well for you drug wise but choose not to follow the recommended regime - that's just silly. I'd be happy to go for blood tests every day if it meant I kept well!

x

tjt6768

To be honest I will just say ditto to DD's post... Sorry to say this but you are being very silly.. hope that reading these posts will give you the kick up the bum that you need mi dear.

I am very fortunate in the sense that I am not on such meds, but I wouldn't take it for granted..

I think that you may have upset some folks on here hun.. I know that probably wasn't your intention at all..

dreamdaisy

I'm not upset. I'm HUGELY envious. I wish I could be so cavalier about things but I guess I have been playing the arthritis game for far longer, and properly, with operations and taking meds that do very little. Thank god she isn't taking anything really serious meds wise, meth is not that bad a drug at the doses we take. It was by doing the fortnightly bloods I found our that enbrel was trying to explode my liver. I felt perfectly OK, I didn't have a clue that was happening. DD

carola

Hi Scarlet

Some good advice given by others regarding prescription certs etc.

Regarding you being too busy to complete regular blood tests and not taking your meds when you should? ..... I think you know the correct answer?

The consultants are there to help you therefore stop wasting their time and follow their instructions. We find it hard enough to secure appointments with them. You have a health condition and luckily there are meds available to you that can control it - why on earth would you not take them? As someone else mentioned, have you yet to come to terms and accept that you have a health condition meantime pressing a self destruct button until you admit it? Or if it is a case of you REALLY being too busy (I still don't get that one) then time management is the key. Register with a pharmacy that can arrange for your prescriptions or simply put an alarm on your mobile, computer or diary to remind you.

I may sound harsh and like I am lecturing you however I am only 39years old and it was only a year ago I was happily busy at my very successful career and then was struck down by health condition and had to give up my career. How I remember having my head filled with work, social and nice thoughts instead of what meds to take when, blood tests, have I really got the strength and pain threshold to go to the loo etc.

A year on I am discovering which meds work for me, monitioring my bloods and well on the way to managing my health condition however I will NEVER EVER take the consultants, specialists, medication and health for granted and treasure them all.

Scarlet - take bake control of your health, body and mind in a safe and positive way by monitoring your meds and bloods.

Although I sound like a right grump I DO wish you positive thoughts and all the best.
Carol

Florence500

Being very busy and equally forgetful myself, I always make another appointment on leaving the surgery for my next blood test so it's done and dusted and put on my iphone with several reminders so I can't forget.

I am new to Meth and currently my side effects are mild, however I am well aware of the damage this drug can do and you can't forget that!

I too am only 39 and although I know this disease won't leave me, I am damn sure I am going to give myself the best chance fight it

paddyw

Hi Scarlet,To me you have passed the hardess thing here by taking the Meth- in the frist place .Only wish i was at your point.Igo back to consultant soon ,have to tell him yes or no to the drug ,i know i cant cope anymore 18 months down the line.wish i had been on it a while like you and coping with it in my body.The friends on here are amazing and have a wealth of knowledge behind them ,so you will not be told (poor Scarlet) this is real ,this condition escalates take it from one who could walk this time last year as far as i liked ,not any more always having to think i have to get back. As i said wish i was at the time you are on the drug and ok,Iwould NOT be missing my tabs or bloods taken.I wish you well But do think on this is no game of hit and miss.Patw

prefabkid47

Hi Scarlet

I can but echo all what's already been said.However I'm somewhat surprised that the doctor cotinues to issue repeat prescriptions in the absence of blood tests. :shock:
One of the main purposes was to monitor liver and kidney function.When there was a 'cock up' with one of my bloods I had to fight tooth and nail to get a repeat prescription and even then had to have a repeat blood test.
I may add that I'm on methotrexate and have been so for some years for RA with no side effects!It certainly has made life more comfortable (shan't say anything about my OA!!)

Ron

Scarlet

Hi everyone
Wow what an amazingly spirited, nice bunch of people you are (and I'm not being sarcastic there, I truly mean that).

I do thoroughly deserve the numerous kicks up the bum I received there, I am aware of that. I am in the process of getting things back on track (I don't know why I neglected to mention that, it is a bit of a key point :???: ) I have been attending regular blood tests for the last 2 months. My post was just a post to get some things off my chest and see whether anyone else had similar feelings.

I just want to state that it was not my intention to make anyone angry or upset and I hope I didn't do that. I do realise that I am very rare in my response to treatment, and for that I count my blessings.

I don't want you all to think that I am just a silly stupid person (well, not all the time anyway :-)). When I was going through the whole process of getting diagnosed, I was in a pretty bad way, I had to drop out of a uni degree and move back home, I could barely walk and there were some days I just didn't bother getting out of the bed - there was no point, it was too much effort to crawl back up the stairs. What was then a 1 hour walk around the block with my dog, now takes me 10 minutes. Those were some dark days, so please believe when I say I can sympathise to some degree with those of you that are suffering.

I guess having written that, I can now see how silly I am, taking my treatment and health for granted. But having said that, there ARE parts of me that think "no-one else I know has to do all this - why do I". None of my friends have to pay for a drug that makes you feel sick as a dog and could potentially harm your health, or have to make monthly trips to the GP. I'm so hoping this doesn't come across as whiny or obnoxious, I'm just voicing feelings, that in all honesty, I've not voiced to anyone before. I just hate looking into my future and seeing these blood tests and drugs being a part of it, for ever and ever.

As well as the kicks up the backside, I really appreciate everyones kind words and thoughts, so thank you. I really do feel bad because I know lots of you are struggling in your battles with RA or other diseases, and I do wish you all the best.

dreamdaisy

Ah, the 'Why me?' question. There is only one answer, 'Why not?'

I am the only one in my circle dealing with this dross, have been for years. So what? I knew from a very early age that life had dealt me a rough set of cards but it does that to quite a few folk. I rail against it all from time to time, pointless really as that wastes energy I don't have but I am sure we all do - oddly enough I don't think anyone on here actually enjoys doing what they have to to ensure something approximating good health. You are, currently, gettting off lightly and if you start being a little more responsible about things then that could continue for a while yet - and wouldn't that be good? DD

keith1971

At the end of the day it's your life & the decisions you make are yours & yours alone.

I think most people are just concerned about the cavalier attitude. Luckily for you, right now, things are going okay......but you surely must be aware that this disease is chronic & progressive - who's to say how you'll be 3, 5 or even 10yrs down the line.

Personally if my rheumatologist told me rubbing pig **** all over me would help I'd be knee deep in a pig sty right now!



x

rebecca1

keith1971 wrote:

Personally if my rheumatologist told me rubbing pig **** all over me would help I'd be knee deep in a pig sty right now!



x

I'm not a frequent contributor on here...i'm quite shy, but oh you made me laugh...(not an easy feat) .....

paddyw

Hi Scarlet,Every one here is only to happy to help you at any time.You are young for this to happen to you,but we all have to get on with it,no other way out .Be strong and let us know how you are PatW

Florence500

rebecca1 wrote:

keith1971 wrote:

Personally if my rheumatologist told me rubbing pig **** all over me would help I'd be knee deep in a pig sty right now!



x

I'm not a frequent contributor on here...i'm quite shy, but oh you made me laugh...(not an easy feat) .....

Me too

carola

I'm glad you are taking back control and going for regular blood tests and also that you have found this site which is great for receiving support, tips, venting and supporting others too.

Hope you are having a good day!

Keep smiling!
Carol

mp1952

Hi Scarlet

It sounds as if your RA was really bad at the beginning - mine was too - so I can identify with taking an hour to do a 10 minute walk with the dog!!!

I responded very well to methotrexate and I am absolutely terrified of going back to the state I was in 3 years ago - when I lay in bed like a block of concrete, not being able to move my jaws, head, neck, shoulders, hands, knees, feet - knowing if there was a burglar, or the house set on fire, I wouldn't be able to get out because I couldn't move ... it was awful.

I agree the blood tests are a pain (I go to hospital every month to have mine done), but on one occasion - I didn't know it - but my liver enzymes had gone very high and if I hadn't had the blood test I could have ended up with liver damage - so I never take any chances with my monthly blood tests...

Anyway - I'm really pleased you're feeling quite well at the moment and hope it continues. Methotrex was a 'life saver' to me 3 years ago - I am a big fan of it!

Best wishes

Marion

Scarlet

Hi everyone

Just thought I'd give you an update - I am being a good girl and keeping up with my blood tests - I have got into the habit of booking my next appointment while I am at the surgery. So hopefully my rheumy nurse will be impressed with my efforts!!

Really appreciate everyones comments :-) Coming on here and reading through everyones posts reminds me to keep making those appointments and ordering those prescriptions!!

madwestie

Scarlett, i am glad that you have sorted out your appoinments.
I think a lot of people taking any meds have thought like you Oh bum do i really have to do this for ever and at your age forever stretchs a long way. i have had Asthnma since i was 16 and have certainly thought about not taking my meds before but as you have found common sense prevails and we keep on taking them, I have to inject Methotrexate each week and i do look at the needle and think oh no do i really have to do this again but i carry on because as you know the other option is not a good one.
I hope you carry on along you good road of having you bloods done and taking your meds.
Do you have to get folic acid every month as i get 28 of them in one go this could decrease the cost for you (which really annoys me as well).

Tracey

williamlargs

Hello young lady

I am an old fart at 51 but with the mind and behaviour of a 20 year old. Believe me for a lot of us it aint all doom and gloom. I went on to meth last summer when my RA flared after 3 years of remission. I have now beem allowed to reduce my blood tests to every 3 months as they have all been fine so far and I have had very few if any side effects.

Like you I would like to get off the meth but won't consider it until the experts tell me. I am on 20mg and it has most certainly made a hell of a difference and like you I forget I have the disease.

As an aside you should move up here to Scotland we don't have to pay for our prescriptions any more!!!

Good luck and keep the chin up.

Scarlet

Haha William I am very jealous you don't have to pay prescription fees, but I live in beautiful Devon and rather like it down here :-) Just out of interest, how did you know your RA had gone into remission?

Tracey, they give me a two month supply of folic acid which isn't so bad I guess, I may speak to the rheumy nurse and see if they can give me more tablets per prescrition. I know drugs cost money but when I think of all the fees I will probably pay over my lifetime....well!! Whenever I am in the pharmacy I always seem to be the only one paying for my prescriptions, I don't know how that works haha, but anyway thats beside the point.

Thanks for your kind words Lynn :-)

skezier

Hi Scarlet,

Glad you have got it sorted and are being good... it will help you flower and with luck prevent any erosion.

After so long they let you drop as Williams said to 3 monthly but I can't remember how long and also it does vary from hospital to hospital.

A prepayment is a good idea and sometimes they will give you 3 months worth but the mtx does seem to be monthly only unfortunately.

You carry on being good and thanks for the update its good to read your taking it now,. Cris x

williamlargs

Scarlet wrote:

Haha William I am very jealous you don't have to pay prescription fees, but I live in beautiful Devon and rather like it down here :-) Just out of interest, how did you know your RA had gone into remission?

Tracey, they give me a two month supply of folic acid which isn't so bad I guess, I may speak to the rheumy nurse and see if they can give me more tablets per prescrition. I know drugs cost money but when I think of all the fees I will probably pay over my lifetime....well!! Whenever I am in the pharmacy I always seem to be the only one paying for my prescriptions, I don't know how that works haha, but anyway thats beside the point.

Thanks for your kind words Lynn :-)

In answer to your question I don't know if it can ever really go in to total remission. I'll give you a brief history.

I was diagnosed in 2003 after several months of little sleep because of the pain in my wrists. I was put onto a drug called sulphasalazine which worked well and in no time I could drop the pain killers. After approx 3/4years of this I asked if i could come off the drugs and after several months and various x rays and blood tests I was granted permission.

To try and cut a very long and boring story short after several years of practically a drug free existence my RA flared again in the form of a cyst rupturing in my knee and pain in most joints and once again a daily cocktail of diclofenic and paracetomol. This time I was put on meth which took rather longer to take effect than the sulph. Also after scanning my most recent x rays closely my rheumy said there was most definately the beginnings of joint deteriaoation in the joints in my hands. Therefore despite eventually wanting to come off the meth I will stay on till told otherwise. I suspect as a young person you maybe want to drink alcohol with this drug. If you do you should certainly keep your blood tests as regular as they want you to. I drink probably more than I should but seem to get away with it according to my liver function test. This is not the case for everyone.

Good luck