For those who experienced the nasty side affects of Sulfasalazine when you first started it, how long did you persist with taking the drug? I'm only a few days in, still have to gradually increase my dose each week, and I've already had enough, but I know that it's not that bad and could be worse... Currently it's just mild nausia (but I haven't actually been sick), no appetite, drowsiness/fatigue (I slept 14 hours yesterday), dizziness/weakness and a tickly/sore throat.
What are/were your experiences and what helped?
Thank you
Written by
Savannahseger
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A completely unscientific answer is I always gave any Dmard a month to settle....if you really can't manage that ....talk to your Rheumy nurse & see what she advises. I'm sure the anxiety we all feel on starting these drugs gives you a queasy feeling.
The only time I didn't wait a month, was when I was vomiting every day...,I gave up there & then & moved on.
Hope you get settled soon...it's a rotten time when you are trying to find the right meds....but unfortunately it's the only way to get the drug that is going to help you.....& in the end most if us do find it!
yes I feel like I should persist a bit longer. I'm going on holiday in 5 weeks so I want to make sure it's gone before then because it's a 13 hour flight and I don't want to feel sick.. but I will give it a few weeks.
I'm also starting Cimzia injections and previously, biologists put me into reumission on their own, so the Sulfa might not be necessary.
Do speak to your Rheumy nurse to try to get settle before your holiday....as you say nothing worse than feeling sick on a flight.
She might even take you off the SSZ!
I once flew to RSA & just before landing felt really sick....felt worse at hotel& started blaming aircraft food...then found about 6 others on flight had same problem.....we all ended up in hospital with the Norovirus we had imported from the UK!
I am on Sulfa, now along with Hydroxychloroquine, I started the Sulfa on its own, I did have headaches at first which didn't last too long, and a lack of appetite, have lost a few pounds more of which I need to do ! Bit that was all, seem fine now, apart from the appetite bit. Good luck with it all, I hope it settles down for you soon. If you are feeling sick why not try some ginger ale or ginger tea, they might help ?
Yes I have a loss of appetite and could do with loosing some weight so that isn't bothering me haha, it's just the constant nausea feeling and drowsiness that I'm struggling at work with.
I will try some ginger tea, I've heard that's really good! Thank you for the tip.
I had similar. Nausea and dizziness. I saw the pharmacist at the practice who looked into it and suggested I persevered for a bit longer. I did and now have no side effects. They cleared between 5-6 weeks. Hopefully, yours will too. Pukka Three Ginget tea was good for dealing with the nausea. Have a lovely holiday.
I had bad stomach pains for 3 weeks but eventually they stopped. Things were going well up to week 14 then I developed a rash and mouth ulcers so had to stop taking it. I have an appointment on Friday with my rheumatologist to see what I need to do now.
Ahh ok - strange how your body suddenly rejected it after so much time? Goes to show it's important to flag up all your symptoms. Good luck with finding the right meds x
I only managed 2 months, sickness, upset stomach, dizziness and loss of balance, fell over a couple of times and sleeping about 18 hours a day. Phoned rheumatology nurse who spoke to rheumatologist who said to stop it immediately and gave me an appointment for the following week. Have since had heart ultra sound heart and lung and heart echocardiography to make sure no underlying problems. All clear so back to hospital tomorrow for loads of bloods as local health centre does not have one off the correct coloured blood vials the In a further week see rheumatologist to get something new started for SLE.
I came off it last week and it feels like I am still under the influence. Similar to you with side effects. It’s horrible in my opinion I wish I could find a drug that works for me. I was three and half weeks and only got to two tablets a day.
You did well to last for 3 weeks... I hope you find something that works too! Did you have the same flu like symptoms? I can't tell if I've just caught a bug at the wrong time or if it's related, but I'm sure it is related to the Sulfa...
Sorry you're having a rotten time on SSZ. I did too, similar symptoms to yours. I gave it a good go, I remained on it 7 months, too long really but I had issues with someone initiating an alternative. Next LEF was added to existing MTX though I didn't last too long on that either, thank goodness MTX still worked. I was prescribed prochlorperazine 3 x daily to help ease the nausea from SSZ. If your nausea increases do ask your GP if he'll prescribe an anti emetic, they can really help if you have the right one.
I hope whatever you try next it helps... with limited, containable or preferably no side effects.
Pleased to help. I hope your nausea eases with an anti emetic, one less side effect to cope with. Part of the reason for remaining on it so long was my Rheumy going on extended leave & neither Rheumy nurse nor Registrar would take the responsibility without her say so. The next time I saw her she took me off it with immediate effect & I started LEF a few days later once I'd got my script filled.
I didn't have flu-type symptoms, that sounds like uncontrolled RD though, are you certain it's the SSZ? Did you go from another DMARD to SSZ or is this your first?
Thank you. Ahhh I see, that sounds troublesome but at least they sorted it out for you.
I'm not certain it's the SSZ but the symptoms started as soon as I started taking the pills and I saw in the leaflet that a sore throat / fever / flu can be a rare side effect. But I guess it could be coincidental. I wasn't on anything before this but I'm due to start biologic injections (cimzia) soon.
Difficult to tell then I would think. Are you over the, now or still having them?
You're fortunate that you're starting biologics, if you've only tried SSZ that is. I've tried 4 DMARDs, currently just on MTX & won't be considered for them. I hope Cimzia works for you, there are many here on it.
yes I've tried all other options before - couldnt handle methotrexate or lefludomide, had a skin reaction to etanercept and did well on humira but I guess they are trying something different now.
Glad you've found what works for you though! It's a good community here for support and advice x
I started in September on the Sulfasalazine, after about three weeks I noticed a bad taste in my mouth and food didn't taste good. That seems to be going away. I also have nausea which so far hasn't subsided but a couple days ago I decided to try CBD oil and that made the nausea go away and I am back to feeling normal.
The brand I am using is cbdMD Premium CBD Oil - 1000MG. 1 dropper supplies 16.8mg CBD. I take it right when I get up. I was taking it at night and noticed I woke up feeling better but then the minute I ate something I started to feel sick to my stomach/low energy. I just started on SSZ so I wasn't sure what to expect. I then tried it first thing in the morning and now my stomach is settled. I live in Montana so I'm not sure every state carries it or carries the same brand. If you live where they sell it, I would recommend stopping in a store or two and talking to the providers. This has a very low amount of THC so I can take it without any effects. They do have a website: cbdmd.com and the flavor I got was Berry which is very tolerable. Best of luck.
Admittedly I was naughty (?). I had bad side effects and rheumy suggested going back down to 2 per day. I never went back up again... I've been lucky, I would discuss with Doc. Good luck!
Hi slife - so are you getting a benefit from only 2 sulfa tablets per day? Could you tell more of your story? I've had to stay at 2 tablets due to the headaches if I try to increase so I was wondering whether to try staying on two only longer to see if I get any benefit?
I was on this medication for a couple of years but was never convinced it did very much for me, but it was one of a number of meds I was taking at the time, I no longer take it, side effects for me were unnerving, urine and semen were disturbingly very very yellow I couldn't help thinking about my insides, I spoke to someone taking it and they felt very much the same, I've no wish to put anyone off what could probably help them, just sharing my experience, anyway good luck in all that you do.
No worries, I'm grateful to you for sharing your experience! I know everyone reacts differently but I do feel similar to you, in the sense that I'm not happy about putting something so strong into my body... however I feel like that about all of the RA drugs. I have a period of reumisson for 4 years where I didn't have to take a thing and I honestly thought I had 'cured' my RA with my diet and lifestyle, but alas it came back and I'm resorting to meds again. Hopefully in the future they will invent kinder drugs to treat it.
I'm waiting to speak to the doctor about these side effects and take it from there... thank you!
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