Sulfasalazine causing anxiety?

[Clotheshorse7]

I’ve been taking Sulfa for 8 weeks now, first 4 weeks were building up to 4 x 500mg a day. I was fine u til now but just the last few days I’ve become so anxious and I can’t seem to organise my thoughts. Also very restless and have insomnia. I’ve never suffered with anxiety before. Anyone have a similar experience? Ps waiting for Dr to call me back.

[rmros]

Yes, similar.

If the sulfasalazine is the cause then it might be something that goes away. I had anxiety with hydroxychloroquine but it eventually passed. As long as you are safe you might find persevering pays off, but it's not easy.

With sulfasalazine I don't remember if I had anxiety but it did negatively affect my mood and after about 8 months I decided it wasn't worth continuing. I've found methotrexate both more effective and more manageable.

I hope you can get some reassurance and that it passes soon.

[Clotheshorse7 in reply to rmros]

Thank you for sharing your experience. Unfortunately I don’t think I can persevere as its so bad it’s preventing me from working or doing anything else productive. I will see what the Dr advises.

[rmros in reply to Clotheshorse7]

Sorry to hear that. From what I read here it seems people either tolerate sulfasalazine just fine or like us have intolerable side effects but there's little inbetween.

[Gillybob19]

Yes sulfa didn't like me. It left me feeling like a zombie as I couldn't organise anything. I felt so low but very agitated/anxious. It was very odd. The symptoms resolved quickly once I stopped taking it.

[Clotheshorse7 in reply to Gillybob19]

Can I ask how long before it resolved?

[Gillybob19]

A few days to a week

[rmros in reply to Gillybob19]

This was my experience and it's how I knew the sulfasalazine was to blame. I experimented with stopping and felt better within a couple of days, then restarted and the low mood returned very quickly.

[Clotheshorse7 in reply to rmros]

Thanks for this, feels like it is more than likely the Sulfa causing the anxiety and strange mood, seeing my RA Dr on Friday so hopefully it will resolve soon.

[Clotheshorse7]

Thanks so much.

[Potatos]

IItmademymoodverylowIdidn'trealisethatwastheissueuntilIcameoffitanditwaslikeacloudlifted

[Jackie1947]

I'm sorry you are experiencing this and hope the Dr can adjust this for you. I've been on it for 18 years and at the beginning had upset stomach that's all. Good luck

[Hidden in reply to Jackie1947]

Hi Jackie, I like you am now on Benepali and have taken sulphasalazine for around 20 years. I thought with no ill effect. No anxiety like clotheshorse7 reported. However, like you ,I have suffered from some sort of bowelitis over the last 9 years . Tests only confirm my bowel is now long and loopy. At the moment I have gastritis and confirmed gallstones although the occasional pain is around the pancreas. IBS symptoms have pestered me for 9 years. I am now begining to question if this inflammation RA or sulphasalazine related. So hard to know. Hard to investigate too with such long waiting lists and one at a time tests. Good luck everyone on finding the cause . So much is trial and error.

[Jackie1947 in reply to Hidden]

Sorry guts are causing problems and getting treatment isn't quick. I started investigation back in July 2022 and took to March following a CT scan confirmed Pancreatitis. Now as we know RA loves to attack when it can and there is a link between the two. My gastro consultant sees the link also between RA and microscopic colitis. Biopsy taken now waiting to hear back. Life eh? I had my gallbladder removed some 53 years ago. Yes I was young 😀 Sulphzasaline could be a contributor to bowel problems . I've been on it around 17/ 18 years. Benipali has for the first time ever put my RA into remission and given I'm so pleased to say that.

[Hidden in reply to Jackie1947]

Thank you Jackie. I hope you don't have to wait too long for your results which can take weeks. I had biopsy tests for microscopic colitis in 2015 which came back negative. However, the symptoms still flair periodically throughout the bowel including the pancreas. A recent ultrasound showed negative results, but I need to press for further ones now. Interesting to read of the links you outline. I have found it so supportive to share here and thank you for sharing with me. I hope you get good treatment soon and dont have to wait too long.

[Jackie1947 in reply to Hidden]

The same to you. Take care

[Trishfrog1 in reply to Hidden]

Oh wow concerning your bowel ..I'd been have issues with my right side upper back and right rib ..this had been going on for months had ct scan found a collapse of transverse colon with engorgment sent to have colonoscopy but in the mean time I'd been of methotrexate for 6 weeks had colonoscopy found nothing everything fine ...was off everything upto the 2nd week in December been on sulfasazaline for 7 weeks then boom up all night to 4am in the morning with excruciating upper back problem again ...and I've been putting this problem down to the meds funny I'd not had it since I took my self of methotrexate for months 7 weeks on another medication and it's back...took my self of sulfasalazine on saturday as I was feeling really anxious agitated fatigued the list is endless ..after 2 days of it felt like a cloud had lifted ...I'm sure it's the meds my whb is too low now and my alp is crucial horrible drug sulfasalazine

[Sparky_46]

I had this also for a few weeks while my dosage was increased to 4 a day but the anxiety has since passed. I'm convinced though that it is effecting my mood as I'm very easily agitated now and I was pretty laid back before.

[rmros in reply to Sparky_46]

Do talk to your doctor about it. Mood disturbance is a known side effect and your mental health is just as important as physical.

[Wannabeabago]

Hello, I had that with Sulfasalazine as well. I drove to my parent’s house, 13 hours away, non stop on that stuff, had a super fast heart rate, anxiety and insomnia and just had to stop it.

My Rheumatologist tried to tell me he had never heard of my symptoms but I said ‘nope, I’m not taking it anymore’

It’s your body and you know it best and can choose!!!

Good luck!

[LinaM]

yes .. I had mood issues with SSZ and HCL and had to stop . I didn’t persevere any longer than 12 weeks on either of them . I was on a wonderful spa trip that I had dreamt about going on for years when I should’ve been relaxed and loving it. The SSL made me feel depressed and unsociable and spoiled the whole experience. I know it was the drug because I felt better as soon as I stopped .

[girli1111]

Yes! Although I’m told this is very unusual. I had particularly vivid and disturbing dreams whilst on sulphasalazine and I also had what I now recognise were panic attacks (hadn’t had them before or since coming off). My heart would race and I felt inexplicably panicked and tearful - not helpful at work!).

[HallySim]

I'm afraid I also had to come.off sulpha for the same reason. I felt quite unhinged to be honest! It's always difficult to tell what's a side effect and what is genuine anxiety about having this condition etc, but I felt like I'd drunk 6 espressos. My mother in law has been on it years, but thinking about it, she doesn't sleep, so....

[RUSTY750]

Hope this helps.. I suffered pretty bad depression for about 6 months till I changed to a biological.. google.com/search?q=sulfasa...

[LisaJ42]

Yes I had the exact same experience. Anxious, depressed, insomnia. I had to stop taking it,

[hbowling]

Hello

I was given Sulfazalazine initially but could only take for 4 weeks as it made me feel dreadful. I felt like I was stuck in a big pot of treacle. I couldn’t speak properly, it felt like I was watching life from the sidelines, thoughts totally random and sky high anxiety such as I have never experienced before. It was so bad that I couldn’t even ring my surgery to make an appointment with my doctor and my husband had to do it.!! Was taken off it immediately and now have it noted in my records that I cannot take it due to the side effects.

I feel for you and I hope you are able to have an alternative drug.

[Seatgeorge]

I had a oroblem with hydroxychloroquine made me delusional, consultant took me off it straight away,good luck.

[Seatgeorge]

I had a oroblem with hydroxychloroquine made me delusional, consultant took me off it straight away,good luck.

[Makorokoto]

Hello

I'm new to this forum, although I have been lurking for a while. I'm sorry to hear of your experience.

My recent experience of sulfasalazine was pretty awful. I started on 500mg sulfasalazine and was working towards a maximum dose of 500mg four times a day.

By the middle of week 4 when I was taking one 500mg tablet in the morning and two at night, I decided to stop. Long and short is I deteriorated and had to go to A & E. My heart rate was raised, temperature over 38 degrees Celsius, itchy rash over my body, jaundiced eyes and swelling to my face and body and the sensation that my air way was closing up. I was diagnosed with DRESS brought on by sulfasalazine and spent 25 days in hospital.

Before sulfasalazine, I'd been taken off methotrexate as it adversely affected my liver confirmed by a liver biopsy.

So I am now waiting for an appointment with the rheumatologist to discuss my next option.

[rmros in reply to Makorokoto]

Wow. I hope you are considered for biologics now and find something that's right for you.

[Garnacha]

Wow, I've been on it since June 2022 instead of methotrexate which gave me awful side effects (I'm also on hydroxychloroquine, etoricoxib & gabapenti my blood pressure has been going sky high for nearly a year with awful pins & needles in my feet & legs, I'd read that lefluminode can cause this which I was also on, rheumatologist wasn't interested so I stopped taking that June this year, however, whilst the pins & needles have greatly subsided, my blood pressure is still really high despite taking 3 tablets for it.

I also developed severe anxiety & ready to burst into tears at the drop of a hat, burst out crying at the drs one day so he referred me to see the mental health nurse. Started on sertraline at 50mg, increased to 100mg & last week increased to 150mg, the nurse said it could be the anxiety causing the high blood pressure which I thought makes sense which is why it's been increased to 150mg.

I've since done a couple of blood pressure readings & finding its starting to come down but, reading your post & responses I'm now wondering if it's actually sulfasalazine that's causing all the problems 🤔

Lefluminode can take up to 2 years to leave your system & sulfasalazine seemed to be working really well but, the last week or so the pains in my shoulders, elbows, hamstring & side is coming back pretty bad & I'm absolutely knackered 🙄 only said to my hubby yesterday I think I'm in a flare, I also said I'm worried about restarting lefluminode as I thought it was that causing the high blood pressure, now I'm not too sure.

My next appointment with rheumatologist isn't till 21st December 🙄 but as I've said reading your post & replies has made me think.

Sorry for the long winded response, I hope you feel much better soon x

[Angels54]

If you feel worse don’t take it , I was on it and didn’t suit me , check with your doctor first 👍

[Olliechops]

I’ve been on Sulfasalazine for 4 weeks and this past week I have felt awful. I’ve never been depressed before but I have felt really bad, so low in mood and waves of depression coming over me. My head has felt so foggy, as if I am in a bubble. I have decided to come off them. I was on 4 a day but took my last dose yesterday morning. I’m not sure if I have done the right thing but would rather have pain than feel like this. It’s good to hear that I’m not the only one. I just wondered if anyone knows how long they stay in your system and when I am likely to feel any better?