National Rheumatoid Arthritis Society

Am i being stubborn?!?

I dont really write blogs on here as i dont like to complain about myself, but i feel people on here will understand (i hope!!). Im currently taking sulfasalazine and hydroxychloroquine but when i last saw my rhuemy nurse i mentioned they weren't really working well, you know how it goes, waking up in a morning in pain, stiff and seriously lacking in energy (took me most of the day just to clean the bathroom), so she mentioned that if im still as bad next time i see her, which is next week, we might try MTX again. Trouble is i started on that and it made me so ill, they suggested injections and/or starting off on a lower dose but the thing is i really dont want to go back on it because of the things i cant do while on it! I spend as much time as i can ouside which means catching the sun and although i dont drink a lot i do like the odd one or two etc etc. I feel ive had to change my life so much because of the RA already and dont want any more complications!! Consider dummy well and truly spat out!! So am i just being plain stubborn?? Answers on a postcard please.....

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14 replies

    Gina_K
    Gina_K

    Sorry hon, you have to try it again. I am in mtx &plaquinil and Humira and, still enjoy an occasional glass or two of wine.

    And enjoy the sun :)

    allanah
    allanah

    I was in a similar situation and had Methotexate and was really feeling ill and vomiting. They took me off it and I then got aulpha and Enbrel, but they kept saying Enbrel works better with Methoxate. So I gave in and treid it for a second period and the symptoms came straight back whether on oral or injection.So they took me back off and started Leflunomide.

    I think its worth trying what the specialists say cos it could be the mix that is right for you but you dont know till you give it a go, and if it has too many problems they might be like my nurse and take you off as you have given it a good go and its not working for you.

    i agree lots of things change with RA but if you get something that works and you can not be sore in the morning and do a little cleaning, maybe using strong suncream and my rheumy let me have an odd glass of wine(others say NO), you will think its worth it, like l'oreal!!!!

    Hope you manage to make a decision that you are all happy with.
    Love Axx

    Ladybird47
    Ladybird47

    Hi i to had anxiety about taking MTX but i have been on 10mg a week for 18 months i have been ok and i enjoy a drink at weekends, and love hols in the sun. Recently i came of MTX for 5 weeks because of a skin problem, i have been back on 2 weeks now.
    I have to say for the last 2 weeks of not taking it i felt crap which proved to me that i do need it. I am hoping that once it is back in my system i will feel the benefit again.
    I would give it a try again if they can get your dose right you may feel ok, also MTX is one of the drugs that has been tried and tested for many years and has a very good rating for long term. I know this because we have a friend who is a Surgeon he encouraged me to take it. I was on Sulphazalazine for 8yrs. We do need to adjust our lives with this demon RA some more than others, but we don't have to stop enjoying the things we enjoy we just need to be sensible but not boring. So get that bottle of wine in the fridge and stock up sun screen get your meds right and enjoy. Oh and stick your dummy back in Ha ha ha xx Ladybird

    mildy
    mildy

    hi,ive tried both drugs your taking i was then put onto methotrexate tablet form that also disagreed with me so i was then put onto the injection form i take 20mg every week ive been on this quite a while and the side effects havent been as bad for me i also take enbrel along side it if i were you i would give the injection form a try my husband injects me he now thinks hes a doctor

    helixhelix
    helixhelix

    It's not stubborn, just normally resistant to doing something you didn't like first time round. But, pick up that dummy & try again! Ask to start at a low dose & work up slowly, think about when you take it (ie evenings may be better for you) and invest in some sunscreen and a hat. I started at 7.5mg, and worked up in 2.5mg jumps. The first 9 weeks were horrid, but now not too bad. And I'm outside as much as I can, but don't bother with cleaning the bathroom - much nicer things to do when I can bend. Polly

    cathie
    cathie

    There are alternatives to mtxate. Ive been taking it for years but am seriously put out by the light reaction. Face swollen and puffy for a week after ten mins exposure, and sun screen is no use at all. I'm hiding under an explorers hat with big peak, at the moment, but there must be an alternative. And why aren't they offering you anti tnf.
    Hope you get some sort of resolution
    Cathie

    steff
    steff

    Hi, I don't normally comment either (but find the posts really helpful) but am in almost the same position except they're asking me to try the sulfasalazine for a while longer and maybe go back to Methotrexate otherwise. I don't think it's doing very much and feel run down on it (had it since feb) but whilst on the Mtx (Sept until Feb) I had viruses from November until Feb with only two weeks without and my hair was breaking off.
    After reading an interesting book...
    www.amazon.co.uk/Say-Arthri...
    I've recently stocked up on vitamins like Q10, gingko and vit c and zinc and putting nuts and seeds in my cereal and starting to feel a little more refreshed so will see how it goes on the sulfasalazine, and the sun helps a lot! Also off to try a steroid injection in my wrist in the morning as the pain there is getting terrific but a little scared as I'm sooo sensitive to medication.
    Hope you find the right mix
    Steph

    maxb
    maxb

    Thanks for all your resonses and I have put my dummy back in! My biggest problem is that im just so lax about protecting myself, ive had horses for years and while i dont have one of my own anymore i look after a friends when i can and im that used to being able to just set off in a t shirt with no need for sunscreen etc. I have found that my eyes are getting more sensitive to strong light (think this is down to hydroxy?) I know you're all talking sense and i know that i should try MTX again, my mum thinks i may have had a bug last time i tried it which explains the vomiting (really!) My nurse told me that in no uncertain terms should i be exposed to the sun or have a drink and god forbid i got pregnant, not that im planning to yet, i think ive just been given the worse case scenarios judging by all your experiences.
    Maxine xx

    Ladybird47
    Ladybird47

    Good Luck Max i gather you are young and used to doing things fancy free, as i said in my reply just try to adjust your life a little. I take my MTX on a Tuesday night so if have a drink at the weekend its not conflicting to much with taking the meds. This has been ok for me my bloods are fine, oh and i am not that young Max but i know where your coming from. I have a 34yr old son who has RA he is married with 3 little children. Ladybird47 ((( )))

    helixhelix
    helixhelix

    Ok invest in some cool sunglasses as well.... I don't go out without now or get horrific headaches. But with a little bit of planning ahead you can do most of what you want. Tho' as I've just learnt to my cost remember to put sunscreen on your hands too (lots of hand creams have sunblock in them), and keep an eye on keeping scratches clean. But generally you have to try MTX before the docs will consider anything else, and it may well work brilliantly for you second time round.

    The only real no-no is getting pregnant, everything else you can work round. Polly

    maxb
    maxb

    ive found i cant not wear sunglasses when out in the sun so have invested in a v stylish pair, which coming from a girl that used to live in jodphurs.....:) i have been used to being able to do things fancy free and i guess its just come as a shock, i can be very set in my ways, im just finding it so hard adjusting, and also finding it hard making other people realise it too as they're used to seeing me getting stuck in! But seriously thanks for all your support, its great knowing i can rant to people that understand and all your advice and comments have been taken on board.

    Max xx

    TildaT
    TildaT

    Hey Max I'm in the same boat the other way round. My doctor is trying to get me to go back on Sulpha which I hated because the MTX isn't working properly on it's own so he wants me to add this other DMARD in. I am finding the prospect awful but will see my GP tomorrow and think I might have to just agree to try it again.

    Not too bad on MTX apart from spots and mood changes but the Sulpha made me feel sick, gave me sunlight sensitivity and horrible lumps on my neck and ear plus an all body rash. My GP says it would be different this time on a lower dose in combination with the MTX but I'm resisting just as you are with the MTX! TTx

    maxb
    maxb

    Ive had no side effects as such off the sulfa, only at the beginning where i had a few headaches, but i do indigestion from time to time. And steff ive had a look on amazon for that book and considering ordering it, a lot of people ive spoken to say diet can play a big part! xx

    steff
    steff

    Oh hope it helps, my aunt found it and it was quite interesting.x
    Just got back from rheumy and staying on sulfasalazine for a while longer.
    Hopefully the vitamins and diet change will help..!

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