Diagnosed with RA 2 weeks ago. Put on sulphsalazine but have had severe skin reaction so thats stopped. Worried about starring methotrexate as it says you cant drink alcohol. Life is bad enough right now without giving up the wine! Had extreme reaction to pneumococcal vaccine and the worst cold sores ever. All in last 2 weeks. Should I just live with painful hands or try and stick out treatment. Feeling exhausted and fed up!!! Also is there a support group or specialist nurse in my area. Aberdeen.
Thanks
Jo
Written by
jo100
To view profiles and participate in discussions please or .
hi jo,you need to stick with the treatment i was on sulphsalazine it didnt agree with me either i was then put onto methotrexate by tablet which made me so ill and suffered with terrible headaches but i now take methotrexate by injection i also take embrel along side it everyones different and what works for one doesnt work for another i dont drink so that side of it wouldnt bother me but good luck with your treatment i hope you start to feel better soon
Sulphsalazine was not good for me either - nausea, malaise etc. I was already on MTX so meloxicam was added. I have had RA for around 15 years, and I'm now 58.
MTX has given me mouth ulcers, and Ive had some nausea. I do however have a glass of red wine about 5 nights per week.
Sorry to hear you've been diagnosed with RA - not a disease I'd wish on anyone. But just wanted to give you some encouragement that life will get better. The bit just around being diagnosed is evil, and coming to terms with this disease is quite hard especially as it often takes ages to find a mix of meds that suits you and works for you. And yes, swopping alcohol for MTX was a bit tough to start with but you get used to it. Some people do carry on drinking a bit, but I've chosen not to as think health is more important (except for v special ocassions!). But the think to think really hard about is not whether you can cope with the levels of pain now without drugs, but what it could be like in the future if you don't take action now. Anyway, I'm now on MTX plus 2 other DMARDs and it's working reasonably well. Good luck.
Hi Jo, I'm sorry that you too have the diagnosis none of us want. I hope you can find a way to stick with the DMARDS though - it's the only thing which can help .prevent joint damage even though they don't help much with the pain side of things. I am fairly new to this (November last year) and I am praying that the pain will subside once I find a DMARD that works for me! Good luck with everything.
Julie x
Welcome sorry to hear about the diagnosis, welcome to our RA club xx, A
lot of people do very well with Methotrexate , you can drink moderate amounts of alcohol, ( I would avoid this on the day of the methotrexate however.)
Hi Jo, sorry about the diagnosis but welcome to HU at least. I was diagnosed in November but my GP tried me on the Sulphasalazine while I waited for many months for formal diagnosis and like you I had a severe reaction to it.
Now on Methotrexate (MTX) and doing fine on it - giving up alcohol felt like the least of my worries to be honest although I'd started using whisky to numb the pain and I do still miss my drams! It's hard when you are out at a party but then again I am now the designated driver and it's kind of illuminating watching others get drunk when you can't?!
To be honest I'd rather have my wrists and fingers working again any day. And the MTX has worked wonders for me although it took a while. I have no side effects apart from extreme tiredness the day after taking it and for me it's 100% more tolerable than the Sulpha was.
I live in Orkney - so you've got all the services we pay NHS Grampian for but don't seem to get up here! Tilda x
Sorry to be so ignorant, but what is sulphasalzine? I don't think that's used inireland. Plaquinil, my first,then methotrexate or is sulha same as plaquinil? Seems to have a lot lt of nasty side effects!
If only! Don't you just get so tired spelling out Hydroxyxyxyxy....
Just read my Med label, and its called Sulfasalazine or Salazopyrin. Someone told me its a mixture of Sulphur and Aspirin. It was created for some other disease and they found it helped RA.
It has been very good for me, no side effects at all.
Sometimes I think we are treated like guinea pigs. Try this and see if it makes you ill.
Shouldn't they start with: Try this and see if it makes you better?
Hello from Edinburgh. Don't despair, it may be a tricky period sorting out the treatments but there are very effective meds out there, it's just hard to go through all the different combinations. But there is light along the way. I think it's important to be well informed and to have a decent relationship with the rheumy team. So welcome to this group and I'm sure you'll find it very supportive. Cathie
Cathie, it's good to hear somebody say there is light at the end of the tunnel. I see the rheumatologist every three months at my nearest hospital 30 miles away, And with the physio have just managed to get my second appointment in three years at my local GP practice. Who else should be on the team, and what sort of support does it provide? I'm in rural Perthshire..
A team can also include Occupational Therapy. They have been very helpful to me with wrist supports, kitchen gadgets, a high stool and a bath board.
And they have given me relaxation tapes and exercises to relieve the stress of it all.
Mary I am meant to see rheumy every four months or so but been passed over this time because of backlog. I'm 25 miles from hospital and use my GP surgery for everything to date as don't have a rheumy team here at all. Hope this makes you feel a bit better about the service you receive in rural Perthshire?! TT x
I'm also in aberdeen, just north of, in small village called udny green. Would be more than happy to meet up if you'd like to, though have to say I don't have heaps of experience with drugs or this disease. diagnosed 18 months ago and have only had methotrexate as treatment so far. but do understand the feeling of isolation this horrid disease brings. there is a support group that meets in westhill six times per year where there are lots of lovely people with all sorts of experience of RA.
jo, the next meeting is on 4th april at 7.30 in the building next to aldi in westhill. we are really fortunate to have clare jacklin from NRAS as our speaker. OHs/friends are welcome too so if you don't want to come alone they would be more than welcome
I know it has been seven years since this post but I was wondering and hoping you were still with us. How did it go? Could you tolerate the MTX? I think it's killing me.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update - why do answers take so long?!
I was feeling better today, so decided to do some yardwork.
No inflammation showing on my ultrasound so why do I have constant pain in my feet and hands? 
So scared of this uncontrolled pain and more to come from dental treatment on 9th, before I can start Enbrel hopefully soon.
