Sulfasalazine

Toots

Hi everyone

I've had a chat with my doc this morning as I was wondering if he could prescribe different pain meds - the coco's knock me out and the last couple I've had have resulted in a rather sore stomach

Anyway, long story short, he was shocked to hear I'd have such a long wait for my rheumatology appointment so has decided he wants to start me on Sulfasalazine - while there are no blood indications that it's RA, it's fairly obviously an inflammatory arthritis issue of some kind and he'd rather try to treat the cause rather than symptoms with pain meds (happy to hear this). He also said that my reaction to the drug would be more information for rheumy to have.

He made it clear I need to have bloods monitored, so have appointment for phleb in 2 weeks time and am to go back to gp in 4 weeks.

Has anyone had any experience of this particular drug?


ETA: my mum and her aunt are both seriously allergic to a drug that contains a sulfonamide so I'll be very careful about looking for side affects.

stickywicket

I've never done sulph but I do hope it helps. I presume your GP is aware of the family allergy? (It means nothing to me.) Do do all blood tests regularly as they will pick up potential problems before you're aware of them. I don't know whether or not sulph, like meth, means no alcohol at first (and subsequently nowhere near enough ) If so, better be a good girl

dreamdaisy

Hello, I've been on sulph for over eleven years now, I'm on the maximum dose of six tablets per day and the only trouble I have (apart from the Lucozade-coloured urine) is sulph-induced tinnitus. It was initially prescribed by my then-rhematologist. When I began the tablets I bruised superbly, and even now bruise just by blowing on a limb. it keeps my skin under control but does nowt for the arthritis. On the other hand, my mate Nige, who also has PsA, keeps his under control on just four tabs a day. Sometimes life just loves to kick sand in your eyes. DD

PS One can drink when taking sulph.

Toots

stickywicket wrote:

I've never done sulph but I do hope it helps. I presume your GP is aware of the family allergy? (It means nothing to me.) Do do all blood tests regularly as they will pick up potential problems before you're aware of them. I don't know whether or not sulph, like meth, means no alcohol at first (and subsequently nowhere near enough ) If so, better be a good girl

He should be aware, every time I get asked if I have an allergies to medication, I mention it, despite the fact I'm not necessarily allergic to it! I was very knowledgeably informed that the medication they are allergic to is a combination of sulfamethoxazole and trimethoprim, to be fair not entirely sure which one is the culprit. Mum landed in hospital, lumbar punctures etc, as her platelet level dropped dangerously low. So, yeah, lol, will be looking out for the bruising etc. I'm not really a drinker, the odd Baileys or couple of glasses of wine. Maybe that's my problem, not enough alcohol?!!!

dreamdaisy wrote:

Hello, I've been on sulph for over eleven years now, I'm on the maximum dose of six tablets per day and the only trouble I have (apart from the Lucozade-coloured urine) is sulph-induced tinnitus. It was initially prescribed by my then-rhematologist. When I began the tablets I bruised superbly, and even now bruise just by blowing on a limb. it keeps my skin under control but does nowt for the arthritis. On the other hand, my mate Nige, who also has PsA, keeps his under control on just four tabs a day. Sometimes life just loves to kick sand in your eyes. DD

PS One can drink when taking sulph.

Happy to hear it keeps your skin under control, fiddlesticks that it doesn't do anything for your arthritis though I'm keeping my fingers crossed, if nothing else I'm a little happier in the knowledge that he can prescribe something and that it 'might' work. The bruising and uncontrolled menstrual bleeding was what landed Mum in an ambulance, so not to be paranoid but I'll be watching carefully lol.

Mum just picked up my prescription for me and messaged to say she'll be over with it later this afternoon, but that I've to take the dosage at night anyway. This puzzles me slightly as the impression I got from the doc is that by week 3 I would be having one in morning, two at night kind of idea. Maybe I misunderstood him, but I can't fathom why it would be important to take them at night?

stickywicket

Once again I speak from a position of total ignorance but I know that, with meth, people are sometimes advised to take them at night to minimise any nausea etc ie you're over the worst before yo get up.

See what they say when you get them. It might be one at night for the first week, one morning and night for the second week then one morning and two night by the third week.

Good on you for always mentioning the allergy. There's no way docs can remember everything that happens to us so I always point out anything that might be relevant.

I hope it helps.

Toots

Thanks SW. I find your position of ignorance very informative

Nausea, yes, I did see that is one of the potential side effects so perhaps you've hit the nail on the head. Oh joy, I hope not .....!

Fingers virtually crossed, will see how it goes - I know it takes a while to build up, so not expecting overnight results! (I wish!) x

Boomer13

I think you should hang on to your GP, he sounds very knowledgeable. Maybe we should clone him!

I don't take sulfasalazine, but a friend with RA takes it with the drug taken four times daily. She's taken it for years (~10) without ill-effect, except the size of the tablets make them a little difficult to swallow.

xxAnna

Toots

I have to say this GP's practice as been all-round good for us all, no real complaints at all and yes I agree, sounds like I'm in good hands. Clone away, he's really nice!

Glad to hear that sulfasalazine works well for your friend, makes me hopeful I've got my tablets now, and they're slightly smaller than the Naproxen so no issues for me there.

The bottle does say to say them 'initially' at night, perhaps the nausea thing is the issue until my system gets used to them maybe.

dreamdaisy

Side effects may be listed but that's no guarantee that they will materialise. I started with one in the morning, then one morning and evening, I ensure that I keep a minimum of ten hours between doses. Some may bruise, some may have headaches, some may have nausea and some have no trouble at all. I hope you are in that group.

I think it did little for me because this was the first med I was given and by then I was seven years in. Your doc has been quicker off the mark and that can only be a good thing. DD

Kittkat

I've not tried this but just want to say good luck with it

phoenixoxo

Hi Toots,

Good to have an active sort of GP! I wasn't aware that GPs could prescribe DMARDs, but I found this bit of info: http://www.patient.co.uk/doctor/Disease-Modifying-Antirheumatic-Drugs-(DMARDs).htm – in brief (for anyone who's interested), there's a 'Traffic light scheme' for prescribing and sulf's listed as 'green', 'appropriate for prescribing in primary and secondary care (within the competencies of the prescriber).' The example's from the Avon NHS Trust Protocol, however, so other trust protocols may well vary.

As for experience, yes, I've tried sulf and it was all a bit... explosive . But an ex’s sister was on it for years and had great results with no side effects whatsoever, so let's hope things go well for you too

Best wishes,
Phee

Toots

dreamdaisy wrote:

Side effects may be listed but that's no guarantee that they will materialise. I started with one in the morning, then one morning and evening, I ensure that I keep a minimum of ten hours between doses. Some may bruise, some may have headaches, some may have nausea and some have no trouble at all. I hope you are in that group.

I think it did little for me because this was the first med I was given and by then I was seven years in. Your doc has been quicker off the mark and that can only be a good thing. DD

Thanks DD, useful information as always x There's a warning not to take any indigestion remedies 2 hours either side of taking the sulf. Won't matter at the moment as I'll only be taking one nightly, but I wondered if I should make sure there's a 2 hour gap between the sulf dose and the omeprazole dose as I get further in.

Toots

phoenixe wrote:

Hi Toots,

Good to have an active sort of GP! I wasn't aware that GPs could prescribe DMARDs, but I found this bit of info: http://www.patient.co.uk/doctor/Disease-Modifying-Antirheumatic-Drugs-(DMARDs).htm – in brief (for anyone who's interested), there's a 'Traffic light scheme' for prescribing and sulf's listed as 'green', 'appropriate for prescribing in primary and secondary care (within the competencies of the prescriber).' The example's from the Avon NHS Trust Protocol, however, so other trust protocols may well vary.

As for experience, yes, I've tried sulf and it was all a bit... explosive . But an ex’s sister was on it for years and had great results with no side effects whatsoever, so let's hope things go well for you too

Best wishes,
Phee

Thanks for the link and the info Phee, much appreciated. Fingers virtually crossed that there are no explosions here thank you!!

Toots

Kittkat wrote:

I've not tried this but just want to say good luck with it

Thanks so much Kittkat! x

dreamdaisy

I am fortunate in that I do not have any trouble with indigestion - sometimes the blessings in life go un-noticed because they are taken for granted (see various threads on LWA regarding 'healthy' people. )

Yup, that is true, as is the yellow sulpha wee (channel your inner Beatles for that one, OK? ) and the fact that sulph can alter the colour of soft contact lenses. DD

Toots

dreamdaisy wrote:

, as is the yellow sulpha wee

I swear I didn't read this line, I sang it hahahaha!

I don't have any issues with heartburn or indigestion normally, but thought maybe omeprazole works in the same kind of way as indigestion remedies, albeit in advance instead of after the fact. Perhaps my understanding of that process is not quite right lol.

I'm making my way around all the threads, whether they are relevant to me or not (if you know what I mean). If nothing else, I learn stuff I never knew and in the context of this forum hopefully that will make me more understanding. To say I'm enjoying it sounds wrong, but I do like to learn!

Toots

phoenixe wrote:

http://www.patient.co.uk/doctor/Disease-Modifying-Antirheumatic-Drugs-(DMARDs).htm

Hey Phee, this link doesn't actually work. Can probably figure out the correct address, but thought you'd like to know! x

maria09

Hi Toots
I've been on sulphasalazine for about 4 years with no side effects
All my bloods have remained normal throughout
I hope it works for you
Good luck
Maria

dreamdaisy

Omep and lasaprazole prevent trouble rather than curing it. Some of the meds, especially the anti-inflammatories, can be very harsh on our tummies. I didn't start the omep until I was put onto naproxen, I have conitnued to take it with the diclofenac because I take one of those every day. DD

Toots

maria09 wrote:

Hi Toots
I've been on sulphasalazine for about 4 years with no side effects
All my bloods have remained normal throughout
I hope it works for you
Good luck
Maria

That's great to hear Maria! Thank you for sharing x

Toots

dreamdaisy wrote:

Omep and lasaprazole prevent trouble rather than curing it. Some of the meds, especially the anti-inflammatories, can be very harsh on our tummies. I didn't start the omep until I was put onto naproxen, I have conitnued to take it with the diclofenac because I take one of those every day. DD

Yeah, but I sort of presumed they were of a similar ilk as I understood the omeprazole decreased the acid in your stomach as a preventative, and indigestion remedies decreased the excess acid as a cure. It's probably way more complicated than that lol, so I'll just hush up now and keep taking the tablets!

dreamdaisy

Ah, I know what my problem is: I have a lifetime of taking meds and as a result don't bother asking too many questions about what they do, they do it and why. My interest in meds died out when I was around 12, I was given my first newly-invented asthma inhaler, suddenly I could breathe for more than five months per annum and life was good. DD

dibdab

Hi Toots,

Your GP sounds delightful- can we all share please?

I take Sulfasalazine in combination with other dmards, it sometimes gives me a dodgy tum too, but it's not too bad if taken after food, and if it gets too dodgy I just miss a day and everything settles. Hope it helps you too.

Deb x

Toots

dreamdaisy wrote:

Ah, I know what my problem is: I have a lifetime of taking meds and as a result don't bother asking too many questions about what they do, they do it and why. My interest in meds died out when I was around 12, I was given my first newly-invented asthma inhaler, suddenly I could breathe for more than five months per annum and life was good. DD

Haha, yes, I can totally understand your position DD! In one of my previous workplaces I used to be asked to provide one of my 'useless pieces of information' on a slow day. I don't profess to know a lot, but it would seem my parents (particularly my father I reckon ha!) supplied with enough random knowledge to entertain my work colleagues!! You know, I was one of those kids that asked why all the time and I don't seem to have outgrown it lol.

dibdab wrote:

Hi Toots,

Your GP sounds delightful- can we all share please?

I take Sulfasalazine in combination with other dmards, it sometimes gives me a dodgy tum too, but it's not too bad if taken after food, and if it gets too dodgy I just miss a day and everything settles. Hope it helps you too.

Deb x

Seems like there are a lot of folks wanting a piece of my gp! You can all share, provided you move up here, only fair since I had him first! Thanks as always for the info Deb x

phoenixoxo

Toots wrote:

phoenixe wrote:

http://www.patient.co.uk/doctor/Disease-Modifying-Antirheumatic-Drugs-(DMARDs).htm

Hey Phee, this link doesn't actually work. Can probably figure out the correct address, but thought you'd like to know! x

Oops, sorry Toots! I didn't spot this yesterday :oops:

I'm sure you've found the article by now; if not, just Google 'patient.co.uk DMARDs'. That ought to do the trick! It's the Professional Reference contribution by one Lawrence Knott.

Continuing to hope for your non-explosion,
Phee

Toots

phoenixe wrote:

Continuing to hope for your non-explosion,
Phee

I found the article, thanks Phee x And thank you for the non-explosion wishes! So far so good, although I expect if there are to be any issues it may be once I've got more in my system?