Sulphazalazine?: Spoke to the rheumy nurse this morning... - NRAS

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Sulphazalazine?

Moifoi profile image
16 Replies

Spoke to the rheumy nurse this morning, apparently my liver results are back to normal after the sudden exit from MTX a few weeks ago,

The consultant has suggested Sulphasalazine and I have an appointment next Thursday to be started on it.

I can take painkillers again after 2 weeks, woo hoo, better late than never I suppose, could have done with them during the dental abscess .

Thought I'd ask before i set off on my great adventure tomorrow, has anyone else tried Sulphasalazine?

Moira x

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Moifoi profile image
Moifoi
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16 Replies

I started Sulphasalazine 3 months ago as an add-in to Mtx. I found it a bit tricky to adjust to at first but now it's a breeze .... I think! The one thing I do notice is that it gives me a cold mouth and very cold gums which just seems downright weird! Luce x

Ronnie63 profile image
Ronnie63

Hi Moira

I tried it for 2.5 months in conjunction with MTX and Hydroxy for fine tuning according to my Rheummy. I struggled with the side effects, adjusted the dose and abandoned it in the end. It gave me altered taste, loss of appetite, itchy skin, nausea and stomach cramps. But lots of others on here seem to tolerate it well so hopefully you will get on with it. Good luck

Ronnie xx

dtech profile image
dtech

Been on sulphasalazine for 4 years now along with all the others. I must be one of the lucky ones as never had a problem. Enjoy your adventure at st Neots. Hope the weather improves, it's flipping 'Orible at the moment. Black clouds and rain.

Moifoi profile image
Moifoi

Thanks everyone x

Moifoi profile image
Moifoi

St neots campsite floods, I was there once when there were ducks swimming all over the site. :-)

dtech profile image
dtech

Yes I've seen it like that. Didn't want to mention it tho as didn't want to put you off going.lol.

Moifoi profile image
Moifoi

I'll stay up the dry end :-)

dtech profile image
dtech

You could always fit floats to your van :-)

allanah profile image
allanah

Been on sulphasalazine and had no problems, unfortunately it just didn't stop my particular inflammation, and gives you yellow wee as i remember!! great weather for your hols though...not, they are saving up the good weather for glasto in 2 weeks, as usual lol xx

earthwitch profile image
earthwitch

I tried, but unfortunately developed an allergic hypersensitivity reaction to it after a few weeks. I didn't really have any side effects till then though. I think it is a med that people can get quite sensitive to if its increased too fast, so ask in advance if you can stretch out the increases if you get to the point where you feel its taking you a bit longer to get used to each level. I was fine till I got to four tabs a day, and will always wonder if it would have worked if I'd stuck on 3 for another couple of weeks before increasing again, because that was when I started feeling some of the negative effects.

earthwitch profile image
earthwitch

Oh, and don't even consider taking it if you are allergic to any other sulfa drugs, though they should have asked you that already.

Narna74 profile image
Narna74

Hi Moira,

I have been on sulfa for 8 years! Just dropped back to 2 twice a day, as was on 3 twice a day, With no side effects, well none that made me ill, or want to come off them. You do have orange wee which is normal! Lol. I also inject Mtx once a week and Simponi tnf injection once a month, was also taking hydroxchloquine sulphate which i stopped jan this year. My Auntie also has R.A and was diagnosed at age 21! She has been on sulfa for over 30 years is she on 3 twice a day at moment. So it does suit some people, just take things slow when upping them.

hope they work out for you. Take care x

Hi, I've been taking Sulfa along with Hydroxy for almost a year now, and I've had no obvious side effects. I take 3 twice a day now after upping them gradually for the first few weeks.

Compared to MTX I found them a doddle!

Carolyn

Moifoi profile image
Moifoi

Thank you so much. X

Kathyfitz12 profile image
Kathyfitz12

I wasn't going to reply Moira as I didn't want to alarm you, but having read the other comments I will add my two pennorth!!

I was put on Sulphasalazine before I tried MTX and for me it was the drug from Hell.

I was determined to persevere and took it for the 12 week period I was told was the make or break time, but I vomited every day and ended up existing on poached fish and mashed potatoes as anything that I could smell set me off.....but I was (as you probably are) desperate to get a treatment that worked.

When I went back to my Rheumy he said I should have contacted him as if you get such a violent reaction it's probably not going to be the drug for you! Only advantage for me was I lost 5 Kilos! Conversley I am now well settled on 20mg Mtx per week - it just shows how differently we all react to these wretched drugs. Fingers crossed you have a good reaction to the Suphasalazine .... Kathy

Moifoi profile image
Moifoi

Thanks Kathy, that's what I was like on small dose, 10mg MTX If there's a side effect l 'll get it. Lol. But I'm hoping for the best as we are all so different. X

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