Sulfasalazine and Tiredness: Hello there, Has anyone... - NRAS

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Sulfasalazine and Tiredness

Jellybean45 profile image
12 Replies

Hello there,

Has anyone else experienced tiredness from taking sulfasalazine? I’ve been on it for around 3 months now, only in the last few weeks have I felt extremely tired most of the time. It’s starting to affect my work. I’ve had more blood tests done yesterday but not sure if they tested for iron levels etc. Also, I was on 5mg of steroids a day but recently come off them.

Any advice would be appreciated.

Thank you.

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Jellybean45 profile image
Jellybean45
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12 Replies
Lolabridge profile image
Lolabridge

Hello Jellybean. It’s possible that the tiredness is because you are no longer on the steroids. It may not be the Sulfasalazine itself that’s making you tired.

The other possibility is that, having come off the steroids, your meds may need tweaking to better control your RA. Unfortunately fatigue is one of the worst problems we can experience with RA, especially when it’s not properly controlled.

So I suggest you contact your Rheumy for advice.

Jellybean45 profile image
Jellybean45 in reply to Lolabridge

Hi Lolabridge, thank you for your message.

That does make sense. I have told my Rheumy nurse about feeling tired but I’m not sure she completely took it on board so will have to contact her again. Its such a horrible feeling being tired all the time ☹️

Lolabridge profile image
Lolabridge in reply to Jellybean45

Try calling it fatigue not tired and say you know it’s a sign of uncontrolled (or poorly controlled) RA! Then she may take notice.We really do have to be pushy to be heard I’ve found. Good luck.

Jellybean45 profile image
Jellybean45 in reply to Lolabridge

Okay that’s great, thanks for the advice. I have noticed that too, they just don’t tend to listen otherwise.

Lovetodanceto profile image
Lovetodanceto

Well hey there Jellybean 45 well I'm on Sulfasalazine since February and I have fatigue a lot of the time, they may have to add another medication to that, take careX

HallySim profile image
HallySim

Not sure whether it was the RA or the sulphas making me tired. I had to come off it though as got racy heart and anxiety

Jellybean45 profile image
Jellybean45 in reply to HallySim

Oh really. That’s weird because I’ve been feeling very anxious recently. I do suffer with anxiety but recently it’s been a lot worse. And I’ve had a couple of panic attacks. So frustrating ☹️. I don’t want to come of sulfa just yet though, how long were you on it before you came off?

HallySim profile image
HallySim in reply to Jellybean45

Hiya, yes I also have experienced anxiety before taking Sulpha, but this time it seemed to be quite physiological if you see what I mean. I was also a bit butterfly brained along with it, like Id be driving to work in one of my schools, and suddenly go blank about who I was going to see etc. I think I was only on it about 3 months or so, when I called the nurse she whipped me straight off it and even though I've said Id be willing to try small doses as an experiment now, they have said its a definite no-no. I think I might have sounded quite bonkers when I called them, i was in quite a flap! I'll never really know how much the anxiety was due to the meds, and how much was due to the sheer panic of the new diagnosis at the time, thats part of the problem isnt it?

Osame profile image
Osame

Hi, I’ve been on sulfasalazine since being diagnosed last May, I’ve been complaining of extreme fatigue ever since. My bloods look ok and I’m told it’s just par for the course having RA. Not sure if this information is of any use to you. I also suffer with anxiety and had counselling for it during lockdown I think it was brought about by the enormity of the diagnosis and the whole pandemic, counselling helped but I do still have health anxiety for sure.

Cactiman profile image
Cactiman

I’m always feeling tired but whether that’s because I take Sulfasalazine or not I’m not sure check with your nurse.

Jetxav profile image
Jetxav

Hi Sorry to hear of your problems. I know when I was on Sulphasalazine I felt awful and had dreadful rashes and felt unwell, so came off it fairly quickly. I do know that stopping steroids though does make you feel much more tired, as that happened to me, although after a month or two I returned to the 'tired' syndrome sort of expected with RA. After that I was on Mycophenolate a few years, which was stopped prior to having a hip replacement and so far has never started again because of the pandemic and lack of treatment. My RA has been much worse and tiredness has been a problem. However, since having both Pfizers jabs I am exhausted most of the time, which definitely can be called 'fatigue'. The next appointment with the Rheumatologist has been delayed yet again for a few more months because I have a knee replacement due in a week or so. I wonder if anybody else has experienced worse fatigue following the jabs?

Mistress profile image
Mistress

Hi Jellybean It's strange you ask me that, I've been taking it for several years now and have the bruising and tinnitus side effects but I am constantly tired.

Not yawning tired just can't be bothered tired, no real motivation to get on with anything.

I moved house to Wales in the November just before covid and started work tidying up the house but over the vivid period life has gotten slower and slower and I am now continually tring to get myself moving again. I haven' yet seen a rheumatalogist so have no one to discuss my tiredness with but previous to moving here i had already given up work as i had become to slow to be employed and am currently living off of savings.

I'm sure covid has a part to play as I am here on my own, but becoming unemployable before moving and now yourself asking I am on alert about sulphasalazine and when I finally get to see a rheumy I will be discussing a drug change.

Thanks for the question you may have helped us both, good luck Missy

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