about 5weeks ago I stopped metoject with the agreement of the consultant, I couldn't cope with the side effects any longer,I'd been on tablet & injection for about 18 months so feel I'd given it a good shot, I'm now taking sulfasalazine instead, I'm only on week 5 & was worried whether I'd start getting more pain,the consultant said that methotrexate takes months to get out of your system so fingers crossed sulfasalazine works.
I can't tell you how happy I was to be off methotrexate & how I actually feel I'm getting my life & my brain back, no hangover feeling or brainfog, not wobbly or slurring for a few days 🤣 initially felt sick with sulfasalazine & was taking cyclazine 7 days a week but now only the odd day do I feel sick,so even less tablets to take 😀
the pain in my back,side & front of ribs though 😔😔😔 had a full bone scan & couldn't have prednisolone until after this, I was lucky & only waited 2 weeks for the scan so started on pred the day after.
I'd also bit the bullet &booked a holiday to zante, wasn't planning on going abroad this year with covid etc then kept seeing my friends lovely photos on holiday, I live by Cardiff Airport & seeing the planes taking off thought sod it 🤣booked & then all on the news were cancellations,missed flights, lost luggage etc,was really worried but arrived in zante nearly 2 weeks ago & I'm so glad I did,kept my mask on the whole flight,there were about 3- 4 other passengers who wore them but that's all.
I started prednisolone the day I left, was so happy as trying to sleep in a strange bed in the heat with my back,side etc would be awful,the first couple of days I could feel the pain easing, only on 20mg for 10 days then 15 for 10 days, 10 for 10 days tapering off to 0, but, I'm now on 15mg &the pain is coming back just as bad, I'm in absolute agony first thing, I'll have to ring the helpline when I get home as I'm assuming that sulfasalazine hasn't quite kicked in, when I was on metoject & had this pain, within a couple of days of taking prednisolone the pain went.
anyway,I know sulfasalazine can make your wee orange which it did but, when I first got my prescription the chemist didn't have enough so I had to go back to get the rest, these are what I brought on holiday, as soon as I opened the bottle I noticed the tablets were white not orange but also my wee is normal colour now, I checked the bottle which says sulfadiazine, does anyone know if they are the same as sulfasalazine? I assume the chemist wouldn't have given me something else & I'm more than happy having normal colour wee 🤣😂
sorry for such a long post, I seem to write more & more each time 🙄
this is a photo of our pool, so lucky to be able to cool off & have been thinking of you suffering in the heat in the UK (or wherever you may be)
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Hiya Deb. Lovely you've had a good holiday. It is hot here, lowest temp last night here in NW England was 26° & that was at 3.30am so you're probably in the best place, & by the pool even better! It's expected to break tomorrow so you'll have missed the worst of it hopefully.
The tablets you've been given aren't the same as sulfasalazine. Sulfadiazine is an antibiotic. You may know but sulfasalazine is made up of 2 components, an antibiotic (a sulfonamide, the sulfa part) & an anti inflammatory (a salicylate, the salazine part). So you have been dispensed the wrong med, an antibiotic instead of the DMARD you should have.
How long is it until you return home?
NB I’ve just found this on the NICE page for sulfadiazine
Important safety information
Safe Practice
Sulfadiazine has been confused with sulfasalazine; care must be taken to ensure the correct drug is prescribed and dispensed. bnf.nice.org.uk/drugs/sulfa...
The same warning on the NICE sulfasalazine page too. Sulfasalazine has been confused with sulfadiazine. bnf.nice.org.uk/drugs/sulfa...
Not helped either by both being 500mg tablets, though the colour is different, which is why you questioned it… sulfasalazine tablets are yellow, sulfadiazine are white (& so doesn’t change the colour of your wee as SSZ does).
It is unusual, the only DMARD which is. Often noticed here if someone has a reaction to SSZ it's usually turned out that it's the antibiotic component they've reacted negatively to. I had to come off it due to really low mood, depression is a common side effect of the antibiotic side of SSZ. That's when I was alerted to what it's made up of.
Oh jeez, no wonder my pains getting worse 😠 I've just double checked the box & it's definitely sulfadiazine 😡 so I've rung the helpline & the consultants secretary, had to leave a message, fingers crossed they ring me back sooner than later, I may try to up the pred back to 20 but not sure if I'll have enough, was worried about bringing all my meds to Greece so only brought enough for whilstvim here.
I get home Friday night so if they don't ring me there's not a lot I can do till next week, I don't suppose there's any point in taking any more of the sulfadiazine 🙄 but I won't miss them as they're just as big to swallow as the orange sulfasalazine 🤣
Thank you & AgedCrone for the replies, I'm so glad I posted the question, some of the links won't open as they say only available in the UK, just hope that the lefluminode, hydroxychloroquine, etoricoxib, lansoprazole & prednisolone don't interact with sulfadiazine.
Update: whilst typing the rheumatology team rang me, she's going to speak to the consultant on what's happened & ring me back, she said Boots will need to be informed as there could have been serious implications issuing the wrong drug.
I'm just pleased you noticed & asked… thanks to SSZ's unusual side effect having stopped! Pleased it will be reported to Boots too… as well it should. It was fortunate it was a med you didn’t have a bad reaction to, that could have been a case of medical negligence. Let us know what happens?
I hope the 15mg pred will keep you moving until you're seen in Sept you enjoy the remainder of your holiday. 😎
Thank you, as times going on I'm getting really annoyed now with Boots, I was feeling OK on sulfasalazine apart from feeling a bit sickly & when I stopped feeling sick thought brilliant my bodies used to it now, onwards & upwards 😀 but obviously it's because I wasn't taking sulfasalazine 🙄now, I'm thinking how much has Boots mistake sent me back, 2 weeks without it, when I had to stop metoject & lefluminode for 2 - 3 weeks due to covid boy did I feel it & this is when the awful pain in my back, side & ribs came back with a vengeance.
Fingers crossed 🤞 pred helps.
I'm in & out the pool like a yo yo 🤣 my skin is so sensitive now from hydroxy I dread to think how bad it would have been if I was on the "real" sulfasalazine, I've bought a sponge that I soak with water to drip over me in-between the dips as I'm itching like hell 🤣 but I'm not complaining 🤣😂 it's lovely here & the people are so nice ❤ x
I can see how it would be a disappointment, thinking you've got past SSZ side effects.
About your skin being sensitive, maybe check the patient information leaflet in the box as I’ve found this in several places under side effects… plan to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen. Sulfadiazine may make your skin sensitive to sunlight. Itchy skin & rashes are listed too. Recommendation also to avoid sunscreens containing para amino benzoic acid (PABA).
So potentially not only hydroxychloroquine being causal, sulfadiazine may have been exacerbating the problem. So please do take extra care, especially now. If there wasn’t a leaflet in the box (it happens, especially if it's a part box) I have a link for one, it might come in helpful.
You're very kind finding out all this information for me ❤ o couldn't load your message last night, Internet is sometimes not very good
Yes there is a leaflet, I'll have a read later, I'm still in bed 🤣 bad nights sleep again not helped with hubby's snoring 😴 😡 I did read all the ssz leaflet when I first got it, didn't think about checking the sulfadiazine one, I'll check the sun creams I've got too.
We're supposed to be hiring a speed boat today (should have been yesterday but it was too windy) & hoping the winds dropped, I'll be warning hubby to drive it carefully as I don't want to bounce around too much 😉 although secretly I'd love to, if I could turn back time 🙏
Another update, consultant just rang, said obviously don't take anymore of sulfadiazine &🤷♀️ to stay on 15mg of pred not 20, he wants me to have tapered off them for my next appointment in September, I said the pain in my side is getting so bad again, he checked the results of my recent bone scan & said everything was normal 🤷♀️ no inflammation or enthesitis, so I'm none the wiser on what's causing so much pain except the link Charlie shared on my last post described the pain to a tee, I did show the consultant this document in June but he was pretty dismissive of it, will push it under his nose in September 🤣.
He said however if I feel ill whilst away to see a Dr x
Thats terrible amd really serious the pharmacy dispensed the incorrect medication. Good job its been brought to your attention.
So glad you didn't have a bad reaction to it. Be careful with your steroids as you can't go cold turkey with them (sure you know this, dont mean to be bossy) space them out so they last till you get back.
Pool looks amazing and so sorry you are in pain and this has happened, great news to be off the methotrexate though of it made you feel.so crap xx
Yes so I've found out 😡 in zante at the minute so can't do anything about it till I'm home Friday night, spoke to consultant & Boots.
Only thing I'm unsure of now though is when I get home I won't have had any sulfasalazine for 2 weeks, do I carry on with 4 tablets a day (2 in the morning & 2 in the evening) or do I have to go back to 1 a day for a week then 2 a day for a week etc.
I've rung the consultant again to ask but had to leave a message x
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