Sulfasalazine question: Hi everyoneI hope you can help... - NRAS

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Sulfasalazine question

Shyandretiring profile image
49 Replies

Hi everyoneI hope you can help me.

I am now on my 3rd week of sulfasalazine ( 1 morning 2 evening ) I keep reading that you must take the doses within 8 hours of each other and not to exceed 8 hours has anyone else read this and does anyone know what happens if you exceed 8 hours between doses doesnt it work as well or at all ???

Kind regards

Shy

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Shyandretiring
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49 Replies
zen4 profile image
zen4

Hello I have taken Sulfasalazine for over 30 years and never been told that by any consultants! Of course it could be new information and maybe it works more efficiently that way ? I take mine about 13 hours apart! You could vheck on the nurse advice line? I'm sure many others will answer Best wishes Jasmine

Shyandretiring profile image
Shyandretiring in reply tozen4

Thank you JasmineIf you have been taking it for over 30 years with 13 hours in between and it works for you then I think I have my answer !

Are you on 1000 mg in the morning and a 1000mg in the evening ?

Warm regards

Shy

zen4 profile image
zen4 in reply toShyandretiring

Hello again Yes I did used to take 1000 x2 daily for many many years initially then it was not so effective so it was put up to 1500 x 2 but then another couple of years later I added Hydroxichloroquine but it effected my eyes so then tried leflunamide but that didn't suit me either so went back onto the sulfazalazine again at the high level as I didn't qualify for biologics! A few years later I was finally allowed Baracitinib, a very recent and new type of medication but I have still been taking the sulfazalaxine at a low dose. I have never had any problems with it. It does take a good few weeks to kick in fully as do all these DMARD drugsSee what everyone else says It could be most effective by having the 8hr gap Hope you are feeling a lot better soon

Shyandretiring profile image
Shyandretiring in reply tozen4

Thank you for the comprehensive reply , can I ask why didnt qualify for any biologics Warm regards

Shy

zen4 profile image
zen4 in reply toShyandretiring

Its all to do with the DAS score. I more often have 1 or 2 joints that flare up and only rarely a large number I am not sure what you know about DAS but they count the flared hot and swollen joints, look at your blood results and listen to what you say and what they see and that gives a score If you don't reach a high enough number you don't qualify. Strangely they don't count ankles and toes in the score and at the time they were my biggest problem along with a couple of other joints You can read about this on the NRAS Booklet you can order for free Its excellent

Shyandretiring profile image
Shyandretiring in reply tozen4

Thank you zen4I did not know about the DAS score so that is very helpful if the sulfersalazine deos not work, as I have 5 or 6 inflammed joints with this flare up.

Thank you so much for your advice again.

zen4 profile image
zen4 in reply toShyandretiring

I think if sulfazalaxine didn't work then you would most likely have to try other conventional drugs like methotrexate leflunamide or Hydroxychloroquine before you would be able to have the newer more selective Biologic drugs whatever you're score . They have come of patents now but are are still a lot more expensive! Anyway hopefully it will work

Shyandretiring profile image
Shyandretiring in reply tozen4

Thank you so much for your kind messages.Warm regards

Shy

Soreknees2016 profile image
Soreknees2016

I’ve been on Sulfasalazine for about 4 years and never heard of that - I take mine (500mgx2] after breakfast and before bed, so prob min 12/13 hours apart and it’s worked very well for me.

Shyandretiring profile image
Shyandretiring in reply toSoreknees2016

Thank you for your reply SorekneesThe 8 hour thing has totally thrown me but you have reassured me that 12-13 hours is ok.

Thank you so much

Soreknees2016 profile image
Soreknees2016 in reply toShyandretiring

I was actually wondering if maybe it’s that doses between days must be at least 8 hours apart ? For example, if for some reason, I didn’t take my 2 tabs in the morning, but took my morning and evening dose of 4 tabs together at midnight, I should then wait until at least 8 am the next day before taking the next dose. That would seem to make sense so there would be no risk of taking too much. Hope that helps!

Shyandretiring profile image
Shyandretiring in reply toSoreknees2016

Yes you could be onto something there Thank you

Shy

Beadie profile image
Beadie

Hi I've been taking salfasalazine for 5 yrs now , after I had covid my 2 x 500mg aday wasn't working the same so it was put upto 3 x 500mg twice aday and 1 x 10mg Leflunomide aday, I take it 8am and 8pm everyday, it works great for me and I've had no issues at all, everything is good. Wish you luck with yours.xx

Shyandretiring profile image
Shyandretiring in reply toBeadie

Thank you BeadieThat is very reassuring as I am in week 3 of taking sulfasalazine ( 1x500 mg am and 1000mg. Pm and 2 tabs of steroids am but am still in a lot of pain.

Warm regards

Shy

Pops77 profile image
Pops77

Hi there, along with others I’ve been on 500mg BD and take it with breakfast then dinner . I don’t count the hours and have never been told that … take care and best wishes x

Shyandretiring profile image
Shyandretiring in reply toPops77

Thank you pops77Very reassuring

Warm regards

Shy

Hopeful1 profile image
Hopeful1 in reply toPops77

Me too.

Boxerlady profile image
Boxerlady

I'm on 3 tablets twice a day and have always taken them with breakfast and tea and have never thought about the time. 😉

Shyandretiring profile image
Shyandretiring in reply toBoxerlady

Thank you so much for your reply BoxerladyYou have put my mind at rest after reading that confusing article about taking it within 8 hours of each other.

Warm regards

Shy

Boxerlady profile image
Boxerlady in reply toShyandretiring

Hate to say it but it's probably best not to read too much! Apart from anything else, our medications are often used to treat other conditions and it's easy to read/hear stuff relating to those uses which have no relevance to our situation 😉

Shyandretiring profile image
Shyandretiring in reply toBoxerlady

You are so right We all know we shouldnt google everything medical ( other browsers are available ) but most of us do and look where it has led me !

Warm regards

Shy

wilbertjellyfish profile image
wilbertjellyfish

Years ago I was on sulphasalazine but wasn't advised of this. If you're to take them 8hrs apart they would advise taking them three times daily not twice, I'd imagine.

Shyandretiring profile image
Shyandretiring in reply towilbertjellyfish

Thank you Wilbert yes I could not work out how that could possibly advise that if I was initially told 1 dose am and 1 dose pm you would have to take them for arguements sake at 11pm and the 07.45 to stay within the 8 hour window 😳

wilbertjellyfish profile image
wilbertjellyfish in reply toShyandretiring

Yes, life is too complicated already without that. 😂

bpeal1 profile image
bpeal1

I believe the advice of taking doses not more than 8 hours apart is for people taking sulphasalazine for inflammatory bowel disease. They often take higher doses and according to the NHS site take it either 3 or 4 times a day.

I’ve been taking sulphasalazine for 17 years and have always taken it at breakfast and after dinner so about 12-13 hours apart. For the last 6 or 7 years I have been taking 8 tablets a day and my rheumatologist is happy for me to take that as two lots of 4 tablets with breakfast and after dinner.

nhs.uk/medicines/sulfasalaz...

SwimmerBTC profile image
SwimmerBTC

I’ve been on Sulfasalazine for the last 20 years and I’ve never been told to take it 8 hours apart. I take 2 tablets in the morning and 2 at bedtime; works well for me along with methotrexate injections and infrequent Rituximab similar infusions.

Jackie1947 profile image
Jackie1947

News to me. Long term user.

Shyandretiring profile image
Shyandretiring in reply toJackie1947

Thank youKind regards

Shy

Haz58 profile image
Haz58

I've been on it for around 2 years. I've read that too but wasn't told it by anyone. I take mine after breakfast then after tea which is around 9 to 10 hours apart. I take 3 twice a day. Same as you it's the only DMARD that I could take but it wasn't enough so my Rheumatologist managed to get me biologics Benepali by tweaking my DAS by 1 point on the form. I'm so grateful she did as it really helped my flares and most of the time I'm in remission. Still get fatigue and pain but I can walk now. I got that I couldn't do anything before Benepali.

Shyandretiring profile image
Shyandretiring in reply toHaz58

I am glad you are now on Benepali and that you are stable pain wise as anyone can be with this condition.Warm regards

Shy

Jackie1947 profile image
Jackie1947 in reply toHaz58

I understand that Benipali is a TNF not Biologic. I was on it for 2 years doing remarkably well until it caused inflammation in the colon

Haz58 profile image
Haz58 in reply toJackie1947

It's a biologic anti-TNF. Same as etanercept. In fact my Rheumatologist calls it Etanercept.

Jackie1947 profile image
Jackie1947 in reply toHaz58

Seems different professionals have different ideas. Benipali is the generic name .

Whereisthesun profile image
Whereisthesun

I’ve been on Sulfasalazine for two years (500mg). Taking 6 a day. I’ve never been told to wait in between doses? I’m supposed to do 2 morning afternoon and evening but I kept missing my afternoon so I asked could I take 3 morning and 3 evening ( or when I remember) That was fine apparently.

Shyandretiring profile image
Shyandretiring in reply toWhereisthesun

Thank youWhereisthesun

I will take 8am and then 8 pm from now on.

Thank you so much

Warm regards

Shy

RAat13 profile image
RAat13

Same as everyone else, I've been on it for 15 years now. Take 3 in the morning and 3 at night, never been an issue, the 8 hour interval is between night time and morning doses but it's not something most people adhere to and my consultant said it doesn't matter x

Shyandretiring profile image
Shyandretiring in reply toRAat13

Thank you RAat13That is very reassuring

Warm regards

Shy

RAat13 profile image
RAat13 in reply toShyandretiring

I should've also added that that advice is for people with Ulcerative Colitis and Crohn's disease not RA x

Shyandretiring profile image
Shyandretiring in reply toRAat13

That really is helpful

Thank you

Chockyuk profile image
Chockyuk

Hi - I take my first 2 about 7am before I set off for work, then the next two about 5pm, when I get home. On the weekend timings are different. I haven’t heard anything about how many hours you should take them apart. All I know is Sulfasalazine works well for me. ☺️ 👍

Shyandretiring profile image
Shyandretiring in reply toChockyuk

Thank you ChockyukI hope it works for me to !

Zara0123 profile image
Zara0123

Hi Shyandretiring, I have taken sulphasalazine for about 2 years now. I was told to leave a 8 hour gap between each dose. But I haven't read anywhere that we have to take the next dose after 8 hours. I leave a longer gap between each dose and have not had a problem.

Shyandretiring profile image
Shyandretiring in reply toZara0123

Thank you Zara0123It sounds like I should be taking it around every 12 hours as a lot of people on here have said.

Warm regards

Shy

Green230461 profile image
Green230461

been on sulfasalazine for over ten years never heard that! I know it changes in your liver but let’s face it if you are not getting side effects then it is a great drug 🤩 I take it with brekkie and supper

Shyandretiring profile image
Shyandretiring in reply toGreen230461

You are so right Green230461

Wraf22 profile image
Wraf22

I have been on sulfasalazine for about three years and I take them at breakfast and dinner never worried about the time gap. All good so far , so personally I wouldn’t worry about it. I have been known to forget to take the ones at dinner, and ended up taking them in the evening without any real problems. hope that helps, and I hope they work as well for you as they have for

Shyandretiring profile image
Shyandretiring in reply toWraf22

Thank ypu Wraff22

Yes it confused me for a time but now hoping to take with 12 hours gaps ( ish)

Warm regards

Shy

Angie2212 profile image
Angie2212

I take 6 x 500mg Sulfasasalzine and hydrochloriquine. I split it 3 am and 3 pm and are 12hrs apart. I've never been told to take within a certain amount of time.

Hoping you get some relief soon.

Shyandretiring profile image
Shyandretiring in reply toAngie2212

Thank you Angie2212That is very helpful

Kind regards

Shy

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