Hello

Hi Im Claire and am usually a bubbly carefree working Mummy and Wife but ..........don't feel like that much! I have just been diagnosed with RA or thats what my consultant thinks at this stage as this has all come on so quickly (3 months) and my blood tests suggest this. Thats enough to get your head round but the scarey thing is the drugs. Like most of you probably, I am about to start treatment of Methotrexate and am terrified! I very rarely take paracetomol and cant believe I will be putting this in my body and with all the side effects seems so life changing. Although my consultant and GP are great I just feel so brainwashed with it all and teary its just not like me.... I never usually join sites like this but feel very alone, my hubby is great and the girls keep me busy but still.... I work in a school and and am am going back next week full time now wish I had stayed part time as always feel like I am dragging myself around always so tired and cant even have a HUGE glass of wine to cheer myself up.. I know there are so many people out there worse than me with must worse and fatal conditions and i am very sorry for them truly but almost feel bitter as 3 months ago none of this even entered my mind now my life is a string of blood tests, appts and medication.... yuk! Thanks for listening Claire x

30 Replies

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  • Claire its hard getting your head round this diagnosis isn't it. This disease presents itself in many different ways,what works for one won't neccessarly work for another. The good news is you have been told what is wrong with you and though there is no cure for ra, there are things that can be done to help you come to terms with whats wrong.

    There are a lot of very good people on here far better qualified than me to answer your questions,but the one thing we all have in common is ra. We support each other in times of hardship and we share in the good things that happen to each of us. The one thing i do know is that without all these lovely people on here i thing they wouls have had to lock me up i have been that bad at times.

    You can always see how you get on when you go back next week and if you feel you can't cope you can always ask to go back to part time. I'm sure your place of work will do that for you. You need to try and claim dla and get yourself some help from the dwp. Speak to them and see what they say.

    I'm not sure if this has been of any help to you,but you are not alone. Sylvi.xx

  • Hello Claire. This is my first post but i have been a lurking reader for açcouple of weeks! I had to reply as in so many ways i feel / have felt as you do.

    Firstly, school next week! Im a teacher and know the dread of going back to the relentless pressure, but we dont have to hit the ground running. The kids need time to adapt again too. Usually the thought of it is much worse than being there too. Do whatever u can to make homelife easy. I use the slowcooker a lot and try to get meals for Mon and Tues ready on Sundays. Not sure how old your girls are but it does get a little easier as they grow up. Go to bed as early as u need to and plan some good things each week so life isnt all a out work.

    I know how u feel about your life feeling taken over by RA. It is very time consuming at the start til u are on a successful drugs routine that works. Id almost never been to the Dr apart from pregnancies, so i was shocked at the number lf appts, but that will settle. With the MTX, u will be carefully monitored so anything going wrong can be spotted early and changes made, so try not to worry too much. When it kicks in, you will probably feel a lot better and life wont feel so much of a challenge.

    Try to stay on top of ur pain all the time. Has ur rheumy nurse or GP given you some strong cocodamol or tramadol? Though its tempting to think its better not to take things, u will feel much more positive when ur pain is controlled.

    Try to do some good things this week to cheer u up and dont anticipate next week too much. Thinking of you :)

  • Thanks Sylvi you have helped just feel a right misery at the mo - Ill bounce back with the help from you guys Im sure .. Thanks Claire x

  • Claire we are always here no matter what happens. I am having a rough time of it at the moment,but by being on here and helping others like me makes life just a tad bit easier. When you talk to others it start to put your problems on the back burner. sylvi.xxx

  • Ah thank you so much for your advice ...yes I am going back as an LSA and I just hate the thought of letting teachers and pupils down because I cant do the things I need to do. But I am sure I ll be ok and my Manager is lovely I will have a chat with her Monday we go back. And yes will get my slow cooker out and going to take myself for a gentle swim to help me and for thinking time.. C x

  • Teddy, meant to say yes have got cocodamol but makes me feel really sick so just trying to stick to lower impact pain killers at the mo...Oh and yes my girls are 11 and 6 and crazy bless them!! Hope you get on ok when you go back just don't think about it too much and enjoy your last week off C x

  • And its a good job there are people like you Sylvi ... x

  • Thats nice of you to say so. thank you very much. sylvi.xxx

  • Hi Claire, sorry to hear you've been diagnosed with ra but glad you found us for support. I was diagnosed with ra and started methotrexate in May so it's all quite new to me too. The drugs are scarey but most people tolerate them very well with little or no side effects so fingers crossed you'll have no problems. The mtx has worked wonders for my pain and stiffness and the improvement has been brilliant since starting it. I'm the same as you about taking drugs but this disease is not something you can fight yourself. I try to counteract the toxicity of the drugs by leading a healthy lifestyle and eating a wholesome diet. I wish you well in your treatment and want you to know that things will get better. If you have any questions you will always find someone on hand here to help. Best of luck and warm hugs

    Paula x

  • Paula , Thank you so much for your kind words ..never visited sites like this before but cannot believe how lovely and understanding people are and I can't tell you how much of a boost it has given me. You yourself are so new to this and I wish you luck too..

    Thank you Claire x

  • Hi Claire. Firstly I'm so sorry you have RA and it's come on so quickly - it's like a private bereavement at first I know but in time you'll adapt to it and learn to work with and around it I'm sure. I was diagnosed in November after 9 rocky and painful months and have been on MTX and now also Hydroxichloraquine ever since. I too hate taking drugs - avoided all the pain medicines, only took steroids when truly desperate as they make me bipolar. But what I find now is that I only take MTX and Hydroxy and that's it - no other drugs needed. I have had a bad summer of side effects from the MTX but that was only when the rheumy pushed me up to 17.5 mg and my body just wouldn't stand for it and got pretty sick (no probs with bloods though).

    Now I'm back down to 15mg and find I tolerate this dose really well - I don't even get particularly tired anymore and all nausea is gone. And the joint pain is a distant memory for me now - I'm really healthy, work out most days, walk the dog a long way each day and manage three sons, (two teens) and all their partying and tantrums etc and am back to working as a full time artist. In all probability this time you are in now is the very worst it might get as the drugs are very effective. And it takes a lot for me to say that believe me. Meanwhile see if you can get some physiotherapy and only eat very healthy food so you can compensate for the potential toxicity of these drugs. You may even feel better than you did in previous incarnations - as I currently do. Fingers crossed for you (and I can cross mine at last!). Take care and keep coming here - it's a lifeline for many of us. Tilda x

  • Thank you so much Tilda, I really appreciate your advice. I think over the last few days I have looked at too many negative web sites and literally scared myself silly!!! Thank god for you guys C x

  • Hi Clare, nice to meet you.

    As has already been said on here, it's not necesary that you will have any side effects to the drugs. I've been on mtx. for something like ....... , well, since about 1994/5 and I haven't had any side effects thankfully (fingers crossed it stays that way).

    Hope this gives you some hope for the future, I was diagnosed back in 1993 (ish) and I am still walking about. They treat RA more aggresively nowadays and that's more reason to feel positive about your life. I too only ever took paracetamol before the RA but as my Mum had it I knew that it's a case of needs must and went along with my rheumy's advice. If something didin't agree with me we changed it for something else.

    Also, with regard to the wine ......... when I went onto mtx. (with naproxyn) my rheumy told me that I could have one or two glasses now and again, (with the occasional extra glass at weddings and / or etc.) so have a word with your rheumy nurse or consultant and see if it's OK.

    (You should have been given a phone number for your rheumy nurse if not just ring your consultants secretary and she will give you your nurses number with a bit of luck).

    Best regards,

    Judi

  • Hi Judi

    Thank you feel daft now waffling on after someone like you has had to live with this for soooo long - but like you said they are starting me on a very aggressive treatment and that was the confusing bit. I have got my head around it now and thanks to everybody feel more positive... My consultant did say I could have a couple of glasses of wine here and there but not too much all at once which is fair enough and the least worry and am going to try low alcohol and no alcohol wine.. I guess as I don't smoke, eat healthy and work with two kids my saving grace on days was wine, although I have to admit may turn to my friend Mr Cadbury a little more often!!

    Thank you so much

    Claire x

  • My advice to you is to not go on too many other sites as this is so much the best for RA sufferers Claire and others can be pretty alarming I've found. Re booze - I found the stress of everything made it more of a prop/ escape for a little while and I was drinking more - although that's never been very much.

    The disincentive for drinking was the weight loss I got from eliminating it from my diet completely and also the few drinks I've had have made my liver enzymes rise now I'm on MTX so I've had a phone call from my GP each time (twice) telling me to drop a dose - which in turn meant the MTX took longer to work this well.

    Now I'm alcohol free can walk and dance the night away at the odd party and actually enjoy myself more in other ways like walking briskly in the evening sunshine thanks to MTX. You win some and lose some with all these things but for me there's definitely been more winning through getting fitter and weightloss than I got from my nightly glasses of wine! Also, and this time will come for you too one day, the less booze around the house the better with teenagers! Tilda x

  • Hi Claire, this will be quick (sorry) but had to 'pop in' to say, this is still early days for you, seems like you've had a early diagnoses which will make a huge difference in your recovery and when you reach remission, I was diagnosed Feb 11 and in remission (medically induced) by Dec 11, theres no reason why you won't get there too, there is a positive side to being treated aggresively as hopefully the disease will be brought under control before any permanent damage :) x

  • My youngest daughter had to cut out the wine as she was pregnant (.. please notice .... 'was' - baby boy arrived this morning at 07.30) anyway, as I was saying before I got carried away, she found that Sainsbury's non-alcoholic was the nearest to the real thing. I will ask her as and when I get round to it to make sure it was Sainsbury's. In the beginning I went over to drinking cider as I found the cheap ones were low in alcohol so I felt that I was still having a drink but it wasn't as bad as a glass of wine. Never have understood why no one has cracked making a true alcohol free glass of wine. (I tried wine and lemonade ......... ugh, waste of time, it just tasted watered down!)

    What Tilda says about this site is quite true, it's not the only site I know but somehow it feels more personal and also that everyone on here is a friend.

    Even I have learnt a lot by reading the questions put by one person and then answered by another, find myself saying 'oh, that's why'.

    With regard to your waffling on, you didn't you told it as it is. (I'm thinking of trying to write a book - I didn't realise before coming on this site that I am not short of a word or two !!)

    Best regards,

    Judi xxxxxx

  • Congratulations Judi!!! B xx

  • Yes congratulations Judi - sorry I was using iphone and didn't see this gem of news! Tilda xx

  • Hi Claire

    Can't add much more than has already been said really. I'm a long-term sufferer and all I would say is that although the drug regime seems so aggressive, it really has proved to be the best way to treat it. When I was diagnosed in 1973, there was nothing other than painkillers and steroids. I've taken MTX for 20 odd years and other than feeling sick sometimes and a horrible taste in my mouth the day after I take it, it's not too bad and the benefits far outweigh the bad. And as for drinking wine, my rheumy nurse says anything in moderation ;-)...

    And I agree about the painkilers too. I take co-codamol in the morning about an hour or so before I get up (set the alarm early if necessary) and then again last thing at night and it seems to keep the pain under control. They make me feel whoozy too. In fact my 6' 2" husband was prescribed them not so long ago and took two. They knocked him sideways!!! He can't understand how I take them when for him it was like taking horse tranquilisers!! (I'm only 5' 2") but I suppose it's like all these drugs. Our bodies somehow get used to them. The trick with painkillers is not to wait until you're in agony. Try and catch it early as they're far more effective that way.

    Listen to your medical team. They'll know the best way to treat you and with any luck, it'll become more an inconvenience than anything else. But you might have a bit of a bumpy ride until they get it right. And that's what we're here for. there's always someone to offer an ear or some advice. Between us all, there's not much we haven't experienced so ask away :-)

    Lots of love

    B x

  • Firstly congratulations Judi .....and I can't thank you all enough for your support it really is amazing! I almost feel like I have made new friends ! I have just taken my first lot of

    metho (wotsname ) after a nice walk and feel more relaxed about it thanks to you lot. Now the kids wanna get me on the WII Fit ...ouchey!! Thankyou all again will keep you updated xxx

  • If you do the Wii fit and pay a price please don't be put off Claire! I do it everyday now and it really has helped keep my RA at bay. Try the gentler yoga ones and gradually build up to a bit more everyday. I think our joints are like large teeth and keeping the muscles around them working well is like keeping the gums healthy - they are the parts of us that support the joints so it's vital to keep them strong and well-maintained. Sorry if this sounds like a lecture but I do a bit on my Wii everyday - it's great when the weather's bad too. I have made some amazing friends on this site - some I've even met and several I communicate with outwith HU so you may find the same thing happens to you too. Tilda x

  • Welcome Claire!

    The first 12 months after diagnosis seems to be the worst for most and certainly was for me! I, like you, would not even take paracetomol unless I was desperate, so to take all these horrible drugs feels like you are self poisoning and undoing all the good work in looking after your health. I found myself on the internet all the time, scaring myself silly with all the stuff on there about side effects etc. I think I pretty much went through all the stages of bereavement, for the person I used to be, ending with acceptance and a return to near normality after around 15 months or so!

    Please be kind to yourself. Rest is one of the most important things you must do - when I was in denial I tried to push myself to do even more in defiance of this wretched disease, but I made myself so ill, I felt sure that I would rather die, which is dreadful to think of now! Things will settle down and you will eventually feel better than you do now, both physically and mentally. You will get to the stage where you accept the new you and your limitations and joy will return to your life!

    As someone who has recently given in, and reduced my working hours to part-time (22.5hrs), I can honestly say, this has been the biggest help in giving me back my life, so if you are able to go back to this then do seriously consider it.

    Love & hugs (gentle ones of course!)

    Trish x

  • A bit late to pop into the "hello & welcome" discussion, but was a busy weekend......

    I'm year 3 post diagnosis, and this first bit is really, really the worst. Chances are that it will get hugely better from here on in so do try to keep as positive as you can. Although it can be really miserable, and scary and very frightening about what the future could hold the treatments are better and better all the time so horror stories of the past are very rare now.

    However, do be especially nice to yourself to start with and try not to do too much too quickly. The treatments can take a long time to work, and your body is having to get used to a hefty change. I think we're accustomed to drugs doing their stuff immediately, and expect things to be better in days rather than weeks or months. But this infernal thing does take more time to come to terms with. So don't beat yourself up if you're still bursting into tears every now and then, or feeling low. It's a tough road, but it does lead somewhere better so don't despair. Pollyx. (oh, and I no longer lust for huge glasses of wine either, a teeny tiny glass of something very nice turns out to be just as good!)

  • Thank you , Thankyou ... I am so glad I have met you all xx

  • Hi Claire, I was diagnosed this year, so I'm still learning loads about this disease.

    I can identify with everything you've said.

    I have had some pretty low moments, I did a week or so ago, and I moaned on here, and got some very supportive replies.

    It helped me so much.

    I am feeling so much better the last couple of days....I didn't think I ever would at times.

    I think the drugs are doing a good job, I too hated taking them.

    I'm trying to change my attitude towards them, and trying to see them as a friend, not a foe.

    Sometimes it's easier than others.

    One thing that crops up on here a lot, is that this is going to take time. Time to get the best drugs for us as individuals, and time to learn to accept this, and adapt to life.

    It can be a lonely and isolating disease, but you know that you can come on here, read other's stories and ask questions, and someone will always be there for you.

    Hugs to you,

    Nic x

  • Hi Claire,

    I'm late too in saying welcome, but be assured this is the best and only site I have been on and its been a life saver. I was working 24/7 living in as a manager of a home(long story) I was diagnosed when I started this job, so struggled through thinking I could beat it, I hated the drugs to the point where I stopped taking them in protest....Silly.... don't go there..now I am back on them and recently had the MTX put up to 20mg. If I had found this site earlier I think I would be further down the road of recovery as it is I still have bad days and you will find that its ok to rant and rave on here because we've all done it, it;s amazing how the friends you make here can pick up your mood and have just the answers to make you feel better again. Here's hoping you speedy recovery and acceptance. Carol

  • Hello Claire

    I am so sorry about your diagnosis but really pleased you have found this site because, as you are finding, RA can be very very hard to get your head round and, in my experience, being able to talk to others in the same situation can help tremendously.

    I know that the idea of methotrexate is a scary one - but these days it is pretty much the "drug of choice" for rheumatolgists and it is very widely used. When I was first prescribed methotrexate many years ago, I knew nothing about RA and sites like this didn't exist. So I bought a book about RA, and scared myself silly by reading that methotrexate was "only prescribed in the most severe cases." What I didn't realise was that the book was an old one and that methotrexate was now often one of the first drugs prescribed.

    I've had RA for many years now and have taken many, if not most, of the drugs going. Although I still get nervous when trying something new, I cope now by telling myself that I will give it a go for, say 6 months, and that, if it's not for me, well I can always stop. I wouldn't stop without talking to the consultant first but, by telling myself that, it just gives me a "mental get out" if that makes sense and helps me to cope and feel more in control.

    In my experience, the fear of the drug, is often worse than the reality and it can be really hard to keep taking the meds while seeing no apparent benefit because they tend to take a while to kick in. But if you start to see an improvement in your RA and start to feel better, you are in the best possible position to weigh up the benefits of the drug versus any side effects.

    Also, although everybody is different in how the RA affects them, and in if/how well particular meds help them, you might be encouraged if I tell you that, despite being diagnosed 17 years ago with "aggressive, erosive RA with a bad prognosis" most of the drugs I have taken have helped me and it is thanks to them that I still only have fairly minimal joint damage all these years later.

    I suspect I am waffling now so I'd better stop lol.

    Really good luck with the methotrexate Claire and I so hope it helps you.

    Thinking of you.

    Tillyx

  • Thank you so much Tilly , I am feeling more positive today have been for a lovely walk along the sea front with the kids ....lots of fresh air and thinking time. Touch wood thank goodness after yesterday's methotrexate I am knackered as usual with not much appetite but that's all at the mo... Ps you didn't waffle lol you were fab ! C x

  • Hello Claire, stick in there. It is ok to feel overwhelmed, worried and confused.I am 14 years down the line and work full time in a school and still have those days, though I know how to deal with them better now. Be kind to yourself. Ask us lot lots of questions and even if we don't know the answers you will hopefully feel our support. Feeling lonely and isolated at times happens with this disease and when I feel that way I just read the posts on here and I feel better. Much love Colette

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