First Post!

Hi everyone. I am new to this and this is the first thing I have written on here. I started with RA symptoms 2 years ago and was treated with Plaquenil and Meloxicam. Been going to see Consultant every 3 months but in February he decided that I had "crossed the line" and should come back in a month - after being given a steroid injection, which was great as I was comletely pain free for about 3 weeks. Went back a month later and he prescribed Methotexate, which I was pretty nervous about taking

Been taking them for 4 weeks now and while I am waiting to hopefully see a good result, am feeling really rubbish the day after taking them (Tuesday). Just feel so sick and generally unwell, did a lot of you experience this?

I a really glad I have joined up on here because I think I am still coming to terms with my diagnosis and feeling like nobody else understands what I am going through. Also a bit scared if I am honest reading some of your posts and wondering what the future holds for me.

24 Replies

  • you should be taking folic acid to help with side effects.. not on the methorexate day but at least on the day before and the day after.. look under the poll sectiion of this there was/is one on taking methotrexate.. also go to tags type.. t or find find methotrexate,.

    welcome loulou,,/ think another blogger is using simliar name hers is lulu i think.. im alison real name, form gloucestershire

  • Hi Alison. Thanks for that. I am taking Folic Acid - just forgot to put it in the list! I am Claire, from Norfolk. Sure this will be the first of many posts!

  • Hi Claire,

    Welcome to HU! I'm Jo, I was diagnosed 3yrs ago and am on Mtx injections now. I tried the tablets for a few months but I couldn't stand the side-effects. I was told to try taking folic acid every day except mtx day and this helped a bit but not enough for me to continue taking the tablets. If your problems don't ease it might be worth asking about injections instead? Hopefully you'll begin to feel the benefit of your meds soon, mtx has kept my RA under fairly good control. Initially on 10mg and now on 20mg, along with the occassional steroid dose during flares etc it suits me well at the moment. This site has been a huge support for me and I have found friends who truly understand everything I'm going through! I think I am finally beginning to 'accept' my RA...Keep blogging x

  • Thank you Jo. A lot of people seem to have injections because of the side effects. Guess it is still early days after 4 weeks so will just have to see how it goes. Appointment with Nurse Practitioner next week and then Consultant in June so will see how I go. I am really I see the effects soon because so far the only thing that has helped has been steroid injections. Think acceptance is a very important part of the process but I am not there yet - still at the feeling sorry for myself/why me bit! Trying hard though. Sure I will be blogging lots now have I have started! x

  • Yes, it's still very early days for you but you don't have to suffer unnecessarily! I didn't realise there was a choice, it was only when my mouth was so sore and I had stopped eating that my Rheumy mentioned injections! Re: Consultant appointment - Ask lots of questions, mention everything (even the tiny little niggles) and don't be fobbed off - that's my best advice! As you will see reading through our blogs, we ALL have days where we feel like you do now, I might be coming to terms with it but somedays I get so frustrated and fed up and I agree with you, it's just so unfair ;) xx

  • Hi Claire, Welcome.

    I think what you are experiencing is what a lot of people experience. I started taking Mx in December and at first (10mg rising to 15mg over 6 weeks) I felt nauseous the next morning. I take mine after my main meal on a Tuesday night. This subsided quite a bit. Then I had to up the dose to 20mg and it came back. Then I seemed to get used to it. Now I feel like the inflammation is under control,but I do have bouts of nausea during the week now! I just try my best not to succumb to it, but I know its more difficult for some than others. I also take Omeprazole a stomach protector, once a day. with the folic acid one everyday except MX day. I try to avoid acidic food also, which I feel sure is helping with the nausea as my stomach has enough to put up with without adding more acid!

    Nice to hear from you and keep blogging. This site has been a great source of information and support for me.

    Take care

    Julie x

  • Hi Julie. Thanks for that. I read a few comments on here about taking it at night so I took it last night for the first time. Work all day Mon and Fri so trying to avoid feeling nauseous at work! I just hope it works cos I dont mind a few side effects if it gets the inflammation under control. Like you say I can always take Folic Acid on more days if necessary, just have to see how it goes. I am sure I will be blogging lots now, it is good to be able to talk to people who know exactly how you feel as I feel that most people dont.

    Take care

    Claire x

  • Welcome Claire/ Loulou. I've had the same experience as the others with methotrexate + folic acid. Not very nice, but I find that some weeks it affects me badly while others its ok. A friend also taking it for a different ailment, has injections, and she also has unpleasant side effects but also intermittently. But I do think that for me at least, the treatment has really made a difference. I can do things now I couldnt a year or so ago. And I think exercise is important, it keeps you going even when you're careful.

    Good luck. I think there's lots of support out here.

    Cathie XX

  • Thank you Cathie. Sounds like we are all in the same boat then! I am glad you have found that it makes a difference, just hope it does the same for me. You dont mind a few side effects if it helps the symptoms I guess. I used to be quite active until it started 2 years ago but I do find it harder now. Joined a Zumba class last week, which was fun. Found it ok apart from co-ordination, nothing to do with the RA!

    Claire x

  • I wish I'd kept up more with exercise when I was first diagnosed I was too busy hanging on to a demanding job. Zumba sounds really fun.

  • Used to go to the gym but cant do that anymore. Zumba is fun and it is quite easy on the feet as it it not high impact and involves a lot of arm movement.

  • Hi Lou lou, welcome. I started on plaquinil then v quickley onto methotrexate followed by Humira injections. i also have had many steroid injections and actually spent two years on them (pills). I am on mTX 3 years now and aside from being very tire for about 12 - 24 hours after taking 20mgs I have had no bad side effects, impotant to get your bloods tested every month. The worst side effect I have is I am now a big f..rter! Now I have said it - dunno if its the plaquinil or what but I often get a very gasy tummy. Oh well! I take the MTX on Fri nite as late as poss so I sleep thru the awful draggy tiredness. Give yourself a chance, these meds take a while and I think the longer you are on them maybe side effects lessen. Everybody is different, but there is so many new meds, am sure you will be very well soon:)

  • Thanks Gina. I have had steroid injections in my toes and they were fab - could actually walk and was pain free. I get a gassy tummy as well - must be one of the tablets! A lot of people take them on a Fri nite but I work Sat mornings to I am gonna stick to Monday nites. I am just keeping my fingers crossed that they start to work soon. Claire x

  • Hi Claire,

    Re acceptance - just take it a day at a time and don't try to look too far forward, you'll just scare yourself and it's a waste of precious energy when the things you're worrying about may never happen to you anyway.

    Mtx is the gold standard for early treatment - and early diagnosis and treatment plus all the new drugs developed in the past ten years mean that people are having much better outcomes and less joint damage than in previous decades.

    You need to really give the drugs a good amount of time to take effect, the side-effects do subside as you develop a tolerance to it. I always had a fairly crappy 24 - 48 hrs after taking it but the benefits outweighed the drawbacks and I eventually went onto the injections with more success.

    Keep blogging and get support during this difficult early adjustment phase:-)

    Cece x

  • Hi Cece. Thanks for that. You are so right about the acceptance, I am trying my best and hopefully when the Mtx starts working, it will get easier anyway.

    I do feel fortunate to be taking such a good drug and that the fact that it has been caught early. Have some bone damage in one foot - where it started 2 years ago but hopefully that will it now I have started the Mtx

    Will keep the injections in mind as a lot of people seem to have more success with them. At at hosp next week so will discuss it with nurse.

    Claire x

  • Hi Claire

    welcome, but sorry you have had to meet us all under these circumstanses but you will find many friends on here although we may not have met we find ourselves telling each other some of the things we don't want to worry our partners or medical staff about, as we probably don't understand fully what is happening to our bodies but someone else will have had the same symptoms.:)

    I'm not going to say anything more on MTX or Methotrexative as its abbreviation you have been given every bit of good advise possible. I didn't see if anyone has pointed you towards the NRAS site they are a lifeline they are a charity which was founded by Ailsa an RA sufferer 10 years ago. You can go on line and order some booklets to be sent to you FOC if you wanted you can join the charity for £17.50 I joined last year but had been using them for a good 18 months. i was diagnosed 2 .75 years ago, I have MTX jabs and a biologic drug Humira plus a war and peace long prescription of other pills and potions.

    keep smiling and blog as much as you can it helps to get things out and sorted.

    Tricia xx

  • Thank you Tricia. I know what you mean, I am really pleased I can chat to people on here but like most of you would prefer not to have too! Do chat to my Husband but he doesnt really understand what I am going through.

    I am definitely going to join NRAS, think it is going to prove to be a lifeline in the coming years.

    I will try and keep smiling and will blog when I can it certainly helps.

    Claire xx

  • Hi Claire. Welcome. Im new here too. I also am from norfolk and like you started mtx 4 weeks ago. Side effects have been variable, first week felt rubbish, 2nd weeks was sick once and came out in a skin rash, very itchy last week not too bad and this week not too bad, just really tiredness and lack of appeitite which isnt a bad thing and really bad mouth ulcers. What hospital are you being treated at? Im at Norfolk and Norwich. Hope today has been good to you. Jules x

  • Hi Jules. Thanks for that. Nice to hear from somebody who is at the same stage as me. Not had a good week really. Side effects lasted until yesterday and still feel a bit nauseous today. I started taking them on a Mon and on the Tues had a really bad rash so didnt get off to a very good start! Not had a rash since though. The weird thing is though that my ESR has doubled in the last two weeks so they are definitely not working yet! Got mouth ulcers but they are not that bad. I do go to the N & N. I actually live slightly closer to Kings Lynn but I spoke to somebody before I was referred with RA and she goes to the N & N and said it is apparently the second best RA dept in the country. Hope you are having a good day. Might bump into you at the N & N one day!

    Claire xx

  • Hi Claire & welcome to the site. I still feel like a newbie here and everyone has been really great and given me lots of fantastic advice and support.

    I'm also in the process of changing to Mtx injections from the tablets as I've been on it 7 months and am struggling with the side effects. Hope it settles down for you x

  • Hi. Thanks for that. I was very nervous writing my first bit on here but I am so glad I did.

    Going to bear the injections in mind and see how I get on. Seeing the RA Nurse next Fri so gonna have a chat then. First appointment since I have been on the Mtx. Hope the injections are better for you and your side effects settle down also.

    Claire xx

  • Hi Lou Lou..I 'm the other one but Lulu!!! (Jane actually but everyone knows me as Lulu) I was diagnosed last October and feel like I have been to hell and almost on my way back!! I have deterioated alot since then and my RA is not under control. However this week I have begun to move away from the grief and despair and start to look forward more. I have lost most of the activities from before RA and it may lead to a loss of my career. But I am still me..and my family have been a Godsend throughout. Friends have dwindled but I have made more. I am looking for ways to move on by finding new hobbies and trying to accept that this life which I thought may be a 'phase' is actually IT and why waste another minute. I am on MTX too and still feel like I have been hit by a truck the next morning. I was sad that it didnt seem to be helping me until I missed a dose and was literally clearly whilst it may not be making me feel better at the moment it is stopping me from getting any worse!

    It takes time to deal with this new life and I have decided to let myself get there rather than worrying what I should be doing or getting upset by people's un-educated comments (there have been many!!)

    Take gentle with yourself..and hope you are soon feeling better xx

  • Hi Lulu - I am actually Claire but Louise is my middle name and I used to get called Loulou when I was younger! Poor you, sounds like you have had a rough time. I think I am having a bad time with it but I know it could be a lot worse so I am just trying to count my blessings. I know what you mean about the 'phase' bit. I cried all the way home from hospital 2 months ago when they said I had crossed the line and it was defintely active and then again a month ago when they gave me the tablets. Knew it was coming but it still hit me that this is it and I have just got to get on with it! It is just horrible knowing that you are swallowing something that is going to make you feel so rubbish when you get up the next day, still finding it very hard.

    Yes I think I just need time, am getting there, albeit rather slowly. Try not to get upset by what people say but there are some very unsympathetic people out there.

    You take care too and I hope you are having a good day today - at least the sun is shining!

    Claire xx

  • Hi Claire, i am new to this site too, was diagnosed in Oct 2010, was on hydroxychloroquine first but had a bad reaction to them so am now too on Mtx for the last 7 weeks, had a bad rash when i first went into the sun but has now cleared up, but this week after taking it Tue night have felt sick and have a bloated stomach and not hungry, will see how i go, am not seeing consultant till June.

    I have too found it hard to cope with such a change to my lifestyle, have had to drop a day from work as i am so tired from it , i work in a special needs dept in a secondary school ( stressful at the best of times without RA), i have two daughters who are 22 ans 18 so can help around the house but i hate relying on others to do stuff. This site is excellent and so helpful to us newly diagonsed people.

    Take care Karen x

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