Feel a bit of a fraud.....

[bevlin]

I have only joined this group, not sure how I came across this site but have found all the posts really interesting. I have had RA for the past ten years, had been suffering intermittently with symptoms for a few years prior to that. my mum has RA so wasn't surprised when finally diagnosed. I was in incredible pain to start with, to the point that I couldn't envisage living with that amount of pain every day....My consultant put me on Methotraxate and within three months it started to work and I have had no side effects with taking it, I take Folic acid too which stops the MXT making me feel sick. I thought originally that I would have to give up work but here I am, full time childminding still, at the age of 55......I get some odd aches and pains and I'll never be able to model rings with my gnarled fingers (have got osteo arthritis in my hands, too......lucky me!) but I feel so grateful that the Methotraxate has given me my life back. Am enjoying reading the posts, it's nice to know that you are not alone!

[Hidden]

Hey this is a very timely blog Bevlin - welcome to the forum! Of course you're not a fraud - anyone who has to take MTX to remain relatively RA free should feel sure of that.

It's great to hear you've been taking MTX for that long and are still feeling quite RA free, and that you still feel it's given you back your life - and that you are side effect free too. As you may know from reading the blogs and questions on here I'm having some trouble with MTX and was just feeling a bit sorry for myself when I logged in because the nausea that I managed to avoid for the first 7 months has suddenly become an issue for me. I took my first anti-emetics today and am still feeling a bit sick now - it seems to come in waves a bit like morning sickness used to and the waves don't seem to have stopped yet since taking tonight's dose at about 7pm. But knowing that I might not have to return to that sickening type of RA pain for a long time if I'm lucky is a really positive thought that I'll run with - many thanks and keep coming here! Tilda x

[Hidden]

Hi Bevlin, I'm newly diagnosed and it's lovely to read such a positive blog. It's wonderful that mtx has been so good for you and allowed you continue in your work. I hope I can be as lucky as you, thanks for sharing

[Hidden]

You're no fraud! I'm newly diagnosed too & am just getting acquainted with MTX so hearing about how well you've got on is just the ticket. Thank You!

[peridotlouise]

Thank you so much for posting this! Its so refreshing to read that someone isn't doing so horribly for once, and being 24, I was diagnosed 6 months ago and I've been struggling to come to terms with it. It really has made my day hearing that someone is doing ok. Thanks x

[Judi]

Hi Bev, nice to meet you. Glad you are so positive and managing with the RA.

Using your positive note to pass on to others I too have been taking Mtx. for the past goodness knows how many years (something like since 1995) along with folic acid and fortunately I have had no problems with it either. I carried on working from when I was diagnosed which was about 1993(ish) until 2008 when I was made redundant as the job finished. Had replacement knuckle joints in my right hand and managed to carry on doing my job, (loads and loads of typing) until Dec. 2008.

I have only just last couple of years started on the biologicals (tried humira - didn't suit me) and anti-tnf (retuximab) which have just had my second round of infusions yesterday so still waiting to see if it helps.

Newly diagnosed RA sufferers take note: they treat your RA a lot more aggressively than they did when I was first diagnosed so don't loose heart, I'm still walking about (slower now than I would like but at 62 ??) Everyone is different in how the drugs work or the RA attacks. Some people get more depressed than others - this is natural even in healthy people, just keep as positive as you can. My attitude right through since being diagnosed with RA has been 'Ok, I have RA - so what? most of the time I have been able to forget it (other than taking the meds). Try the drugs they throw at you. Read about all the side effects and if you find that something seems to have created a new problem speak to your RA team ASAP - with one drug I suffered a side effect which was not listed but I notice that has now been included as a side effect.

Bev you are no fraud just a 'beacon of light' to those newly diagnosed. Bless you.

Judi xxxxxxxxxxx

[bevlin]

thank you for your kind comments. actually, it got me thinking last night to how I felt when first diagnosed, I was in such incredible pain and really didn't think (melodramatic here....) that I would be able to carry on living if this is what my life would be like. my husband was having to dress me in the mornings, get me out of the bath, help me go to the loo....it was horrific. I wish you could see me now (fingers crossed...don't want to jinx myself!) I am in no pain except for a few minor twinges, sure, I get tired but ask any other 55 year old childminder or grandma and I'm guessing the answer would be the same. there is light at the end of the tunnel, me and my 76 year old mum, who has had RA for the last forty odd years, are proof of that. she is still leading a full life and we both thank our lucky stars that the Methotraxate works. don't give up hope Xxxx

[Hidden]

Well done Bev,

Really glad things have all gone so well for you.

I was diagnosed earlier this year and am on MTX.

Nice to read a happy story for a change.

Mary

[lynn-bel]

Hi - I too am "lucky" that MTX is doing the trick for me. Compared to many others, I do very well. Have flare ups still but not too often and pain is not so bad anymore as I know how to pace myself. Also, since I retired I have felt better (no stress!). Folic acid helps and I just accept that every Friday after my MTX pills on Thurs night, I will feel tired and nauseous but again, not every week. I feel blessed that I am one of the better off ones. Of course, life is not like it was, can't do so many things anymore, but I've adjusted and making the best of it. Have a wonderful partner who understands and helps, which makes all the difference.

Glad you can still work if you want to and enjoy it. Stay positive and yes, having others to bounce off is a big help.

Lynnx

[bevlin]

One thing that interests me. I was 45 when I started MTX and within three months my periods had completely stopped, never to come back again! up to then I had been very regular, every 28 days without fail. I spoke to my consultant about it ( not that I was complaining!) and he said that he had never heard of this happening to anyone else on MTX, but most of his patients had been menopausal anyway. I'm sure it's to do with the drug. has anybody else had this happen?

[sylvi]

Bev, i think i was diagnosed about the same time as you, and i have managed on tablets of various sorts. Then i had mtx and i was doing well on it until xmas when i had a chest infection. Since then i have barely taken it as it has affected my breathing. I have also had a problem with my knee which hasn't helped me either. I am pleased mtx has worked well for you and it is a good blog.

Best to you, sylvi. xx

[allanah]

Hi Bev

Its so great to hear the people who are doing really well on the drugs, it gives me such hope for my future.My best friend is the same (on Humira) and is working full time and you would not know she had RA.

Its lovely to have another person on the site with different experiences, what you went through at the beginning sounds awful and it sounds like you understand what a lot of us feel on this site. Blog soon, Axx

[Annielou]

Hi all,

I have been on methotrexate (the subcutaneous injections seem to work better than tablets for me) and plaquenil for nearly 2 years. I'm nearly 44. I have to pace myself as get tired much more quickly than before the RA started and whilst I have a few more aches and pains, am not really too bad compared to so many unfortunate people. I have to be careful with shoes and wear flat, comfy ones most of the time but it's not too big a deal! Occasionally I tolerate heels for evening dos. I have had to take a few steroid injections in my joints (knees, foot and finger) but mostly live a normal life and don't look any different! My periods also went peculiar after starting methotrexate, having been regular to the day before. They are much lighter, further apart and sometimes don't happen at all. The doctor didn't seem too worried and neither am I given that I'm 44 and already have kids.

Best wishes to all of you for as good health as possible. x

[bevlin]

Ah Annie, you sound just like me! I live in ballet pumps, I wore heels to a wedding a couple of years ago and had such pain in my ankles I vowed never again! I don't look any different except for my hands, have a few lumps and bumps and a spectacular swan finger! I try to walk as much as possible and feel that it helps keep me supple. Funnily enough as a childminder I spend a lot of time pushing a buggy/ double buggy and I have found that when I walk without it I do have a bit of a limp and tend to walk a bit lopsided.......I suppose the buggy is acting like a walking aid.....oh dear, at this rate I'll be childminding till my dotage with kids attached to a zimmer frame! It is weird how the drugs are a godsend for some people and no help at all to others. hope you stay in good health and let's hope everyone else finds their 'miracle' drug Xxxx

[Annielou]

Hi Bev,

I was so interested to read that you live in ballet pumps, I used to love them but I can't wear them any more as they don't offer enough shock absorption for my feet - I'm comfiest in Clarks active air, Earth Spirit and Fitflops - just bought a lovely pair of white nubuck lace-ups called Funny Bone from Clark's and am looking forward to taking my new puppy Alfie for walks as soon as he is a bit older.

I'm about to have a break from work, have been teaching in an FE college over the past few years but just get so tired that my partner has persuaded me to take some time out (part time work is not part time in teaching unfortunately, more like full-time!). Hopefully I should get a good reference as have never taken any time off for my health, even though some days have been torture and have always booked my endless medical appointments in my own time - silly slave that I am! I hope I find another job in due course. Nice to meet you, so to speak, and hope you can keep active and positive. xx

[bevlin in reply to Annielou]

Thanks Annie, nice to meet you ,too!

I buy my pumps from Primark (cheap date!) and you're right, the shock absorption isnt great but they are the softest shoes that I can comfortably wear. My feet have prominent bones on the bridge now so cant wear trainers as they rub like hell and for some reason my feet seem to have grown along with the RA.....i started out a size 4 and a half and now have to buy a six which although a bit loose, are comfy. Getting worried that at this rate I'll be resembling Coco the clown soon!

Think its good that you will have the new puppy to walk, I'm sure that the regular walking has helped keep me supple, when I was first diagnosed if I sat still for too long I just seized up. After one particularly long flight to Lanzarote with very cramped seats, I had to be literally helped off the plane whilst my body was in a letter 'S' shape.......so embarrassing!

My son is a teacher and I take back all the comments that I have made over the years regarding teachers working 9 to 3 and getting lots of holidays....my son is in school at 8 and rarely home before 6 and then hes got tons of marking and lesson prep to do. I think the reason that I have been able to carry on working for so long is that with my job I can do as little or as much as I want. If I'm feeling tired we do indoor things where I can rest and if I'm in superwoman mode we do the outdoorsy stuff..

Talking about tiredness...I have trouble sleeping often resorting to sleeping pills when I get desperate. Is this a sympton of RA or just an age thing....or just me??? Also, have very dry eyes, is this due to the RA or MTX? Reading all these blogs has made me wonder!

Anyway stay well, speak soon x

[Hidden]

Hi Bev

Really good to hear your very positive story and to hear how well you are doing. In reading your last post I wondered if your dry eye problem may be associated with Sjogren's Syndrome - you can read more about this on this link bssa.uk.net/

Best wishes

Lorraine

[bevlin in reply to Hidden]

Thanks for posting the link Lorraine. Yes , it certainly sounds like this could be whats affecting my eyes and I have a dry mouth too ( and needed a lot of dental work this year although I put that down to having a sweet tooth!) I'll certainly broach the subject with my doctor, Thank you x