Join us at Workfest for expert advice on kickstarting your career x

Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns we suggest you consult your GP.

Rheumatoid arthritis - support thread

(245 Posts)
shitmagnet Tue 03-Apr-12 10:58:01

Welcome all... there seem to be more than just a few of us on here!

The concise intro... I've had severe RA (sudden-onset) since mid-2010, failed methotrexate and am now on actemra. I'm doing OK-ish, but am hoping for better!

SM

MordecaiAndTheRigbys Tue 03-Apr-12 11:01:54

I've ra now since I was 4 am now 31. Am on enbrel and doing good!

2plus2 Tue 03-Apr-12 17:27:54

Hi thank you for this, diagnosed just before Christmas. Have had two steroid injections and started on methotrexate this Monday. Now just feel sick as well as in pain. Deep joy grin

mouldyironingboard Tue 03-Apr-12 17:30:48

I've had AS (ankylosing spondylitis) since 2006. I'm on dmards and 2mg pred.

Discowomb Tue 03-Apr-12 19:56:22

Hi shitmagnet, thanks for starting the thread. I was diagnosed with RA at 16, now 33. Was on methotrexate, sulphasalazine and hyroxychloroquine, stopped mtx injections to try for another baby. 2plus2 just you wait until the injections kick in, I love a steroid injection!

<<sidles in and hands round biscuits & brew>>

Hi shitmagnet Thanks for starting a thread! Hoping we can offer each other support when needed and general ra chat when not??

Hi eeveryone else!! << waves to the earlier posters>> I'm nearly 38 37 and have had ra since 35. Symptoms were severe but meds have helped me to deal with it all and am feeling very good lately smile

everyone blush

2plus2 - the sickness is horrid isn't it? My GP's were good for that and gave me anti sickness injections once a week for aaaaages, (morning after weekly dose) but it did settle down in the end. The hospital didn't mention the truly awful sickness to start with, not everyone gets sick apparently, and I hadn't read the side effects list as was still at head in sand stage I found that within about 6 months of starting the mtx all the sickness had gone, but still got very fucking knackered fatigued for a long time and adjusted life accordingly. I'm glad I stuck with it though.

trace2 Tue 03-Apr-12 20:53:59

can i join please? i was dx last year been on mtx on and off due to white blood count going to low stable on 6 tablets a week but not really doing its job so putting me on sulphasalazine too now as hyroxychloroquine brought me out in hivessad have 5 mg of steroids for a week at moment the injection brings migraine on stuck in bed for two days but it does help me walk .

Hi Trace2,

Come on in and have a brew

Poor you getting migraines each week atm. Lets hope that you will not need the steroids once sulfasalazine kicks in... I found that to be the best combi for me personally,(Sulfa with mtx) and along with low level painkillers it seems to be working for now. (Fingers crossed and touching wood!)

I'm in a fairly positive place now, having been to the pain barrier and back many times in the early stages. I fought with the illness for a long time, eg, when i felt 'well' for a period (no flare ups or terrible pain for say 2-3 weeks) I would reduce/stop with the painkillers, even missing doses of mtx at times. Then I would have a flare and go back to being in constant pain. It took me the best part of two years from diagnosis stage to actually recognise what I was doing and accept that things would be different for me from now on.

That in itself has helped me to stay positive. Its different for everyone though, so I'm sure a mn thread for mutual support will benefit us all smile

MordecaiAndTheRigbys Wed 04-Apr-12 10:50:30

Just thought I'd add I'm ttc no 2 and having difficulties due to ra is any one in the same boat?

Discowomb Wed 04-Apr-12 12:12:40

What difficulties is the RA causing? I didn't notice any effect of the disease on conception last time, and will be discussing TTC no 2 with my Rheumy tomorrow. I hope there's not an RA reason why it could be difficult.

trace2 Wed 04-Apr-12 12:54:12

thanks MissKeithLemonsmile i can not help while ttc my time is over for that.
does anyone use a stick or wheel chair on here? been told to use a stick but it kills my hands even though they gave me a special one to rest my thumb on.

i never got sick or felt sick with mtx but i do take on a night where that's makes a difference but my hair is thinning lots: ( also how may pain killers you all taking i could rattle with all mine would love to stop taking so many , and what about alcohol drink ? i find i can only drink very little now days and causes flare up, any one else same?

2plus2 Wed 04-Apr-12 13:32:49

Hi to all what a lovely thread. Sickness comes and goes feel more like something stuck in my wind pipe and I need a good burp. Sorry! Due to take folic acid on Friday hope this will help. Rheumy nurse said I can take extra if needed but the prescription was only for four tablets does anyone know if I can just take the pregnancy folic acid instead? Pain is much better after the steroid injections and wrist splints help with the pain. Sorry cant help with ttc. Two are enough!!

wonkylegs Wed 04-Apr-12 13:45:08

Hi everyone
I have had RA since I was 19, now 33
It's generally well controlled at the moment thanks to a cocktail of Humira, Mtx & Etodolac (+ all the stuff to control the side effects hmm )
have one 3yo DS who I had to come off the meds to conceive (went on high dose steroids instead)
Just wanted to come on & say hi but I'm at work so will come back to chat when I have a bit more time grin

Discowomb Wed 04-Apr-12 13:46:46

pregnancy folic acid is a very small amount compared to the FA you take to counteract MTX, so definitely take the prescribed ones. I was very lucky - -on MTX since I was 18, and have never been sick or had ulcers etc. It's still a horrible drug though. I had tonsilitis four times in my first 6 months on it. I don't think the drink itself causes flare-ups for me - just the fact that I think I can do anything when I have had a few, and usually end up paying for it with bad feet the next day!

2plus2 Wed 04-Apr-12 18:00:23

Thank you disco womb for folic acid info. I was told by the nurse and the information leaflet they gave me that I can have one unit of alcohol a day and I checked you can't keep them and have the weeks units in one go! I was told definetly no binge drinking.

Discowomb Wed 04-Apr-12 18:13:35

Yes, I was told that too. I was a student when I started taking mtx and I stopped drinking for a whole year. Then it gradually became part of my life again, but I'm a complete lightweight. I rarely drink, but when I do I get giddy on two or three glasses of wine. Of course, I have binged in the Intervening years. Not wise, but my liver function is still good. I'm lucky if I get a glass once a month these days. On the rare occasion I get to go out, I might not drink much, but I still get carried away dancing etc. you're only young once - I've been telling myself that for years despite having a body like an OAP since 16! I've always refused to let it stop me, except for the three times i've been hospitalised and after having both feet operated on at the same time! wink

mouldyironingboard Wed 04-Apr-12 19:16:02

trace2, I use a stick. I think you can buy an ergonimic top for your stick or padded covers for the handle that make them easier to use.

I also use a mobility scooter to help me get around.

Hi all!

2plus2 grin bless ya re the folic acid! the ones we take are I believe 20 times stronger than the pregnancy ones so you'd have to take shed loads!! I did give a friend who is ttc one or two of mine at xmas tho - she will be expecting a super-baby!
Just ask the gp/rheumy nurse for one a day instead of one a week... I never understood why some people get given only one a week when it is known that folate defficiency is so bad when on mtx.

mouldy & trace2 - I'm don't need mobility aids yet, but am resigned to the fact that one day I will... I am currently gym-ing it (first time I've ever joined a gym in my lifeshock) and stopping smoking. Both these I hope will help me in the future... all part of acceptance for me. Trace - you may find some info to help with your stick here www.arthritiscare.org.uk/forums/

discowomb - I must confess at this point that I enjoy the odd binge drink glass of wine!! For the first 18 months after diagnosis I mostly abstained, getting bladdered on 1 glass is so not a good look grin. Then last summer I started drinking a little more and now am back up to pre-arthritis levels of drunkenness tolerance! But I do get the most monstrous awful hangovers, which I am aware is neither big nor clever blush tbh, i think that feeling in the mood to party is a massive bonus given the utter shittiness that ra can bring, so I don't beat myself up about it much

Discowomb Thu 05-Apr-12 07:30:48

Exactly mrs Keith, no point in letting it take away the fun! grin

happyjules Thu 05-Apr-12 21:52:11

Hi there. I was only diagnosed with RA just before Christmas. Although my diagnosis was relatively quick in NHS terms 5 months from onset it has been shit to put it bluntly. At least now things are starting to improve as I am on Methotrexate and have had minimal side effects. At least now I am starting to get closer to normal again finally.

Thought I'd join this lovely thread too. Have had RA for about 8 years now but only properly diagnosed and given mtx & sulfaselazine after having DD1 5 years ago.

Currently pg with DD2 (due date is tomorrow!!!)and a bit worried about having a flare up after a relatively pain free pregnancy as happened last time.Was advised to stop taking mtx at least 3 months before ttc and up my folic acid - waited 5 months and got pg after 2 months.

WannaSplitAPinapple Thu 05-Apr-12 22:23:13

Hi can I join you too? I've been diagnosed for about 3 and a half years now. I was on mtx which worked really well to get it under control. I then went on to sulphalasine so i could try to get pregs but I didn't react well to it so I'm now on hydrochloroquine. I am now 27 weeks pregnant and happy to say my ra appears to be in remission but as choppy said I am also worried about a flare up after birth and how I will cope.

2plus2 Fri 06-Apr-12 13:12:02

Happyjules same time span as me! What dose of mtx are you on? I'm on 15 mg have only had one dose so far. When do you think they kicked in. I've been told 5-6 months does seem a long to wait for the ra symptoms to go. Lovely to hear about everyone at different stages. smile

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now