Hi everyone. I hope you all had a good Xmas and are looking forward to a happy new year!

I've had a rheumy appointment today with my consultant and I've had my first change of drugs for the RA, and am feeling less like a 'newbie' to all of this stuff. I have been on 15mg Methotrexate for the last 12 weeks and have had no improvement. I haven't felt well for one day since I've been taking it and have definitely felt the shutdown of my immune system. I've constantly felt run down, and now have a massive heavy cold that has hit my chest hard. When I'm ill I never have chest problems! I was geared up to go into the consultation ready to refuse to take the MTX anymore. I appreciate it is supposedly slowing the progress of RA but I don't feel that feeling like absolute crap for every day of my life is worth it. As it turns out my consultant said I'd probably be best coming off it and changing to Sulfasalazine, so that's what's happened. I'm going to start taking it on Monday and build up over the weeks to 4 tablets a day. I feel more positive about it because we were thinking of starting a family next year or the year after that and being on the MTX would have put a stop to all of that. Apparently the Sulfasalazine can be taken whilst pregnant which I'm happy about. Fingers crossed that Sulfasalazine works for me, and she said it'll be less likely to make me feel run down as it affects the immune system in a different way. Anyone got any experience with this drug?

She did also run through my blood tests which apparently still show nothing at all. And as my body rarely shows any physical swelling she said that if it wasn't for me having had an ultrasound on my hands which showed inflammation, then I would have gone undiagnosed - thank god for technology!

Anyway I am having a nice quiet new years tomorrow due to this awful cold...I've never felt this horrible with a cold. I hosted christmas day this year and I am still recovering from all the mental and physical exertion of it.

Hope the rest of you are as well as can be.

Gem x

Hi Gem,

Sulfa was the very first drug I was given, after diagnosis. I took it for 12 weeks, gradually building up the amount. I had no real side effects ( apart from it turns your wee orange!!) but it had no effect on my RA whatsoever, so I was then put onto MTX.

Hope it works for you,

Kathleen x

Hi Gem,

I have been on Sulphazalasine as part of the triple therapy and yes it did work very well for me. I was taken off it a year past August as I no longer needed it. Hope you find it works for you too. It will discolour your urine so if you give in samples remember to say you are on it. It also affected my taste: I love curries and I could not even tolerate the smell of them whilst on this drug. It took about 6 months and I enjoy them once again. I wish you the best of luck, you sound very positive about it, keep it up it works wonders.

Take care Lorna x

hey, i can only add that i was on sulfazalazine when i was first diagnosed at 11, so i had the medicine form (bright yellow orange and totally rank) and later on the pills (or horse tablets as i remember them). in the end it wasn't the one for me, but whenever i see that distinctive colour i can't help but think of it!

Hope it works for you, (just don't look at it when you are taking it!)

Laura

hi Gemma,

firstly i can sympathise with feeling poorly ... i went down with a chest infection on Christmas Day, Hubby had one and i knew it on the cards i was in for it. i hate this feeling of your immune system lowered as well. although i don't feel unwell on Methotrexate.

i managed through Christmas and Boxing Day but on Monday morning i went to the Emergency Doctor's which was being held in my Hospital 12 miles away. was seen at 9 a.m. where fortunately there was a thaw so roads were good as it's open country roads there, and finally feel i am on the mend now.

i rang my Rheumy Nurse yesterday and told her i am fed up now of not sleeping well and i am convinced it's the Methotrexate causing it, i can look back and say it was when i upped my dose from 15mg to 20mg. so for now i am cutting back to 15mg, i have added Hydroxy 4 weeks ago but to be honest i think i am going to be considered for Anti TFN's ( i don't know much about them at this stage )

she did say i could stop the Methotrexate for a couple of weeks or cut back the dose, which makes more sense to me, so will see how i get on and am to contact her in a couple of weeks or so.

sorry i don't have any experience of Sulfasalazine but as you can see plenty of others have.

hope you begin to feel better soon,

Suzanne x

Hi Gem,

Very interesting topic for me this one. I am due to see my rhummy on 12th January, and at present the MTX is not working and I'm not sure why, it worked brilliantly for four months, but then I had to come off for two weeks but restarted again in October but still waiting for it to kick in again.

I really want it to work again as I felt great when it was working and I don't want to experiement with different drugs, I know I'm very impatient.

Hope you shift that cold soon.

Keep warm and a happy new year to you.

Anne x

Hi everyone

Well, 5 days in and I almost immediately got side effects. My wee turned bright yellow, which I expected and it doesn't bother me. But I've had horrendous stomach pains and really bad diarrhoea (sorry if that's too much info!) This week I'm only on 1 tablet a day, with the end goal to be on 4 tablets a day in 4 weeks. I dread to think how bad I'll feel then if just one tablet is making my stomach this bad. I'm going to give it until the end of the weekend and then will ring Rheumy nurse. At the moment I've only been taking it at night so the stomach problems have been keeping me awake at night, but when I start splitting the doses as I increase dose, I'm guessing it'll give me stomach pain and diarrhoea 24/7. I'm a bit disappointed as I really wanted this one to work for me too.

Gem x

Oh Gem

I feel so sorry for you. To get your hopes up that this is the one and you could start to plan for a family and then to have these problems so soon. I hope that it does settle down for you and you can carry on taking it.

I was first put on SLZ May 08 and I am now taking 6 a day and I haven't had any side effects at all, not even the orange wee. I think I must have the constitution of an ox. Interesting what you said about failing on MTX, I started taking it last June and I am now on 20mg a week (no side effects again) and I don't think its made any difference at all, in fact I am getting worse.

Hope things improve for you soon.

Take Care

Paula xx

Hi Gem

I've been on Sulf for 3 years. I had a good 18 months but then it started to become less effective so they put me on mtx. I never had any problems with it. I had an awful stomach bug just before Christmas which really made me ill. The combination of sulf and mtx worked for about 4 months but like Paula and Kathleen, I'm getting worse again. I'm only on 12.5 mg of mtx so there's room for an increase. Fingers crossed(well as far as I can!). I have to say that I've been feeling generally rough for a few weeks- I hope it passes.

Hope you feel better soon.

Love
Maria