New and worried

Options
Izzie
Izzie Member Posts: 7
edited 27. Mar 2012, 11:00 in Living with Arthritis archive
Hi,
I'm 52 and new here, to be honest I am not sure what type of arthritis I have, they say psoriatic or rheumatoid! I see a nurse every 3 months and now she is recommending I start on methotrexate because of a scan that was done on my hands and showed I had fluid that would start eroding my joints! I am absolutely terrified of going on this after googling it, what also worries me is that this recomendation is coming from a consultant I have never met, I just dont know which way to turn anymore, I cant afford to take time off work if it makes me ill. yet they are saying I will end up immobile if I dont take it... can anyone advise please?
Izzie xxx

Comments

  • barking1
    barking1 Member Posts: 185
    edited 30. Nov -1, 00:00
    Options
    hi Izzie cant really help :? as i am new as well but just wanted to say keep your chin up, im sure someone on here will be able to help its a great forum, i am in a similar position as i wont know until i go back for results on 16th april but my gp has told me after tests sent from rhumy that i have a aggressive inflamitory arthritis thats in my back and both hips xx sending a hug (((( )))) to keep you going until someome more helpfull comes along. forgot to say im 42 x
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie
    Welcome to the fourm.......
    There are a lot of people who will be able to help you with this drug.
    Sorry I'm not one of them....I've got OA but I do know quite a few are on it.
    When do you see the consultant again? I know you said you see the nurse every 3 months but is that a rhuemy nurse? Sorry I maybe didnt read your post properly ...its early :lol: It sounds as if you need to see a consultant to get a def diagnosis.

    Love
    Hileena
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
    Options
    Hello Izzie and welcome to the forum from me too. A diagnosis of any form of arthritis is frightening because suddenly the future doesn’t seem quite as secure as planned. Quite a few people come on here concerned about their future work prospects.

    Methotrexate is a word that seems to arouse more fear than most of the meds and I’m never quite sure why. Maybe it’s because it’s so often the starting DMARD. I’ve been on it for over ten years and my only, occasional, problem is feeling very tired the day after I take it, or sometimes the day after that. It is a powerful drug but it needs to be because RA and PsA are powerful diseases. While you are taking it you will be very well-monitored to ensure that those nasty side-effects you’ve read of don’t happen.

    Whether yours is RA or PsA, meth is usually prescribed to start with. They are quite right to warn you against not taking it. I had RA for many years before these meds were available and, as a result, my joints are all over the place. Recently, a physiotherapist told me they rarely get to see people who look like me anymore because the meds stop the deformities happening.

    I’d say be guided by your rheumatology team, take the meth on Fridays (or whenever you won’t be working next day) just to be on the safe side, take the folic acid they’ll prescribe with it to minimise side effects and be sure you’re conscientious about the blood tests and the initial lack of any alcohol. And also please keep talking to us because we do understand and we’re always here to sympathise and empathise. I hope you have no problems at all with it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Options
    Hi and welcome to the forum.

    Look forward to seeing you around.
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • MrDJ
    MrDJ Member Posts: 286
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie
    just a quicky as at work but all i can say is dont panic.
    the internet is a great thing but it can also be very misleading when it comes to medication as the first thing you read are normally always horror stories.
    like any drug there can be side affects but the majority of us on it are still around and kicking (just :lol: )
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie, it's lovely to meet you and yes indeedy, you have found the right place for help, information and support.

    Now, just because she was a consultant you haven't met does not mean she doesn't know her job. She will have read your notes, looked at the scans etc and come to this conclusion. She is right, it is time to begin the meth which will hopefully ease the fluid in the joints, prevent it from returning in such quantities and will also prevent joint damage. On the face of it meth is scary, and it is true to say that some cannot take it at all due to the side effects BUT it is also true that there are many of us on here who take it with little or NO trouble and I am one of that number. My diagnosis was undecided for years, I was just classed as an 'inflammatory arthritis' but then my skin obliged with a burst of psoriasis and 'ping!' - new label attached, that of PsA. It didn't alter the treatment, however.

    Please resist the temptation to googbyngjeevask. It's not worth it. Come and talk to us as we are the ones who genuinely know about the meds, and also talk to AC: they have a range of leaflets available which they can send to you, ring the Helpline too - they are very good listeners and I am sure they will offer practical support and advice. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
    Options
    Welcome,

    Firstly I can understand your fear with regards to Meth, I was very worried about the side effects when I first started taking it, but don't believe everything you read on the internet, each person reacts to the drug differently.

    You will probably start on a small dose and then slowly get increased, during this time you will probably feel a bit yucky and tired, but this will pass.

    I started on Meth tablet and I am now on Meth injections, the injections work much better for me than the tablets.

    Meth overall is a great drug and its made a great difference to my life.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie, Firstly welcome to the forum, I hope you find it informative as well as fun. Secondly please don't go goggling information! Half the sites are not correct on there information and are there to scare you! If you want to find out something just post on here in future and we will all try and help you with what you want. I look forward to reading more posts from you in the future.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie
    Sorry I cant offer any help, but I would like to welcome you to the forum, and has the others have said, the information we have now on meds is helpful but can also be very scary.
    I do wish you will with everything and please let us know how you get on x
    Love
    Barbara
  • Izzie
    Izzie Member Posts: 7
    edited 30. Nov -1, 00:00
    Options
    Thank you so much for your replies, because I have felt very alone with this, my family all say take it and my head has been all over the place thinking about it constantly, I've even thought that the dr's have it all wrong and if I ignore this or try and get fitter it'll just go away! Having it suggested I take such a strong treatment has knocked me sideways I think , I just wasn't expecting this. I'm just so worried it makes me ill, I just started a new job and I'm worried about needing any time off, yet I am in awful pain and to be honest there are days I just want to be at home so I can try and get comfortable.
    Thanks again for the replies, I don't feel quite so alone now and it's good to have somewhere to turn, because my head really has been spinning with this all.
    Izzie xxx
    Izzie xxx
  • Scarlet
    Scarlet Member Posts: 40
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie, welcome to the forum!

    I think it's safe to say that nearly everyone here has been in your position at some point, and this is a great place to come and feel slightly less alone when you are trying to find your way through the maze that is arthritis and its treatment.

    Like you, it took me a while to get diagnosed, even now they say I have rheumatoid arthritis, but who knows, I've had so many names thrown at me over the years! I was on some other drugs for the first few years which really didn't help, and when my consultant suggested starting on methotrexate I jumped at the chance, because I'd heard really good things from people on here about it. I'm so glad I started on it, as it made a huge difference and will hopefully slow down the progress of the disease, I'm only 26 and not ready for hip and knee replacements just yet! I didn't google it, if I did I'd probably be feeling exactly the same as you.

    The good thing about methotrexate is that you can start at a low dose and then gradually increase, and if you decide you don't like it, you can explore other options, as many people on here have.
    I hope things get better for you soon,
    Scarlet
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
    Options
    I think quite a few people are undecided about the meds at first because, like you, they hope the docs have made a mistake. This, understandably happens a lot with parents whose young children have been diagnosed. It does seem at first like taking a sledgehammer to crack a nut but, unchallenged by the meds, that nut will grow.

    The meth usually takes several weeks to really kick in but, hopefully, you will then notice a big difference and can st op worrying about the arthritis impacting on your new job.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • debsmartin
    debsmartin Member Posts: 209
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie

    Hello and welcome to the forum, I suffer from RA and I was also terrified about the thought of starting on methotrexate but it has worked really well for me, as others have said before its best not to google for info I prefer to ask on the forum if I have any worries or need advise they are a great bunch to talk to.

    I know everyone reacts different to the drugs we have to take but as I have found if one doesn't work for you there are other ones to try.

    Good luck debs
  • Proserpine
    Proserpine Member Posts: 6
    edited 30. Nov -1, 00:00
    Options
    Hi Izzie! I'm new too - we can be new girls together :)
    I was diagnosed with inflammatory polyarthritis a couple of months ago and started on meth a few weeks ago. I was really, REALLY reluctant to as well - in fact, when I took my first 10mg dose I cried because I was so scared about what it'd do to me! I was expecting to be awake all night being sick, have sores everywhere... But it didn't happen. I just felt a bit nauseous, was all. My dose gradually increased to 20mg, which I took for the first time last night. So far, so good - I do feel very tired, and faintly sick, and a touch woolly-headed. But if the last few weeks are anything to go by, that should pass by tomorrow.
    I did have a few mouth ulcers and a bad stomach a couple of weeks in, but my rheum nurse told me to take my folic acid 3 days a week instead of the original one, and that seemed to help.
    I TOTALLY recognise your 'if I exercise/look after myself, it'll go away' approach - I've been the same. I think it's just denial - nobody wants to face up to having a chronic disease which will to some degree change their life. It's a frightening prospect. My life is already limited compared to a couple of years ago and ultimately, that's what convinced me to take the meth - no WAY was I going to let this disease limit me more, and I'd throw anything and everything at it to that end. And, as I understand it, if the meth really doesn't agree with you, there's so much more that can be thrown at it :lol:
    Good luck with it all xx
  • Izzie
    Izzie Member Posts: 7
    edited 30. Nov -1, 00:00
    Options
    Hi
    Once again thanks for the replies, I am amazed that people are putting into words all the things I have been feeling, I really did think I was the only one out here with all these fears, I think some fear also stems from the fact I live alone and am so scared of being ill and by myself, I have snapped at my kids a few times because all I get is "take it you'll be fine" thats all well and good saying that but I too have visions of being up all night being sick etc etc etc. I work full time and I really don't know if thats the right thing because I am just so tired all the time, sometimes I wish I could shut myself off from the world and try and make sense of all this.... and its ridiculous and I daresay eberyone has said this but it's like someone inside me is yelling nooo I don't want this, then I feel bad as there's a lot worse things I could have and a lot of people a lot worse off than me, I'm sorry if I am not making sense, it's just I have had no one to spill all these feelings out to... thanks again
    Izzie xxx
    Izzie xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Spill away girl, that's what we're here for. I have a lifetime of taking meds and to be honest I never think twice about anything that is suggested: I just want the help they might be able to offer and usually they do make some sort of a difference. I think the key thing is getting in early with the treatment, I am positive if that had happened with me I would not be in the pickle I now am but hey-ho, that thinking won't get me too far. Meth is NOT the daemon so many make it out to be but, should it not suit you, there are other things to try. You should be started with a low-ish dose and then can be gradually increased if all is well. Don't expect the worst to happen because it very rarely does. You will be carefully monitored (all of us on this are) and I am sure it will all be fine. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Izzie
    Izzie Member Posts: 7
    edited 30. Nov -1, 00:00
    Options
    Thanks DD you make a lot of sense, I have put the decision off since January when I was told I needed Meth, I decided last night to ignore the whole thing and take my chances, right up until I had to sit with my hand splints on I was in so much pain... then I found this forum.. thank goodness :)
    Izzie xxx
Back to top

Categories