There are a couple other posts on this topic here, but they are all pretty old, so I thought I'd start a new one. I'm a 40 yr old male. In general, I'm a very upbeat, sharp, intelligent, and active guy. I started taking Sulfasalazine (8 tabs per day) ~6 month ago for Colitis. When I first started taking it, the mood shift was pretty drastic, very high anxiety. I mentioned it to my doc and she was surprised, saying that she had never heard of such a reaction. Told me to keep on it and see how it went. After a couple more weeks, the crazy died down. However, ever since... I've just been off. My anxiety/depression (I don't really know which) has been pretty constant... there have even been a couple times where I've had what seems like a panic attack (I've never had one before, so I don't really know). These attributes are all very new to me and out of character. For months, I've just chalked it up to life circumstance... maybe it's a mid-life crisis, kids are teenagers now and more stressful, responsibilities at work have increased... blah blah blah. I've tried every "healthy" approach I can think of. I exercise regularly, eat right, have lots of friends, etc. But still this barrier remains. Truth is, I have an amazing life. I have a great job, am surrounded by love, had a great childhood, etc. But still there is "something" wrong. I can deal with anxiety. I often am able to resolve depression on my own. But what scares the sh$% out of me is that I just don't feel like myself. I feel hazy and cloudy... like my brain isn't firing on all cylinders. Making connections with people (which has come so easily to me) is getting really, really hard. I'm running out of options, out of new strategies to try... I'm starting to feel a little helpless. Then I found this site. Now I'm wondering if I'm one of the lucky, rare few who don't play nice with this med. A shame because it's doing a great job managing the Colitis and it's super cheap!
At any rate, I've just asked my doctor to switch my meds so I can experiment. I'm waiting to hear back. I'll let you know how that progresses. I'm just curious what other people's experience with Sulfasalazine has been?
Thanks!
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Abe22
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I think you can go up to 4 grams with colitis, but best to ask doctor. Anyway, I used to read voraciously usually at least one book a day, sometimes 2 as I read very fast. And basically the drugs have made it impossible in some strange way that I don't quite understand. It seems that it takes me much longer to absorb what i'm reading, so when I read at a normal speed for me I'd keep loosing track of the story. And if I read at a speed that means I take things in properly I'd basically fall asleep with boredom. And mental arithmetic which I used to do easily now escapes me. And as for multi-tasking, well forget it! I take lots of other things apart from sulpha - about 90 pills a week - so hard to work out which one is the culprit. Or maybe it's the combination? Anyway, none of the drug leaflets list loosing ability to read fast as a side effect! So not quite the same as you, but a similar thing in that there's now a layer of fluff between me and the world. However, on the up side I'm very calm now, and I used to be hyperactive.
My brain behaved like that while I was on MTX - my daughter-in-law told me afterwards she thought I was in the early stages of dementia. It changed back slowly coming off MTX, but I think was also due to the lack of sleep. I'm still not thinking as clearly as I used to be able to especially if I have ( as I often do) a bad night - but on azathioprine my brain feels sharper and I can take in the information from books again.
Hi HH and Abe, I was told the very same by my doc about a year ago when my meds were not working and RA out of control. I told him I used to read several books a week ... also a lightening fast reader, but when RA was more rampant the past year or two I could not seem to get past a few pages and read the same lines over and over again .. and then to add insult .. fell asleep!!! Also I am much calmer now as I am not as OCD or as fussy when things are not as perfect. Who cares?! As long as things are hygienic/clean. The OCD was a factor contributory to my RA coming on massive I believe all those years ago .. I was so stressed I could not have everything perfect. Now my RA is much much more under control I am beginning to feel less sleepy when I read and just started a couple of months ago reading the huge pile of books that I had been bought etc, and had got nowhere with. I am not on anything like the amount of pills you are HH but have a few to take still, and an opiate patch on all the time, which also sends you sleepy of course, and seems to fog you re reading and concentrating. I try to keep the room temp not so hot when reading. Less likely to snooze!! I never felt I had a problem on Sulpha or MTX making me feel anxious or unable to process info etc. Felt my sleepiness was exhaustion from over active RA inflammation. Also hectic schedules ... I did a BA on Sulpha and it was a very physical course too and also a physical MA on MTX and read about 500 books on those courses. Couldn't stop reading! Sulpha was a fantastic med for me for 8 - 9 years for RA with no side effects to make me stop it. It just lost its efficacy after so long. Hope your doc/consultant can throw some light on the matter and you don't have to come off it if it is working so well for the colitis. Good luck.
So, I heard back from my doc. She said that pharmacies and literature often state that 6 tabs is the daily max, but that in practice, they few 8 tabs as the daily max. Long story short, I'm switching back to another medication, Lialda. We'll see what happens.
@helixhelix... sorry to hear that. That seems like it would be really frustrating. I know I'm frustrated with whatever is going on.
Take care Abe22, I'm sure things will eventually get sorted out, im on 30 tabs a day plus 5 injections for diabetes lol but I do have a lot of complaints, when more people have read your post I'm sure you'll get some great advice to keep you going.
Hiya Abe22. That must be very disconcerting for you. I take it you're not in the UK? Sulfasalazine is used for autoimmune diseases, including Rheumatoid which is where you've found yourself, the National Rheumatoid Arthritis Society. The doses used for our diseases may differ from those used for Colitis but there's a dedicated Healthunlocked Crohn's & Colitis site, it is another UK based one but maybe they'd be better placed to help you, or you could search for further sites here healthunlocked.com/find
I hope you do better or at least as well on your new med & you don't react to it.
I felt rubbish from day 1 on Sulfa - it was my first drug for RA and after three weeks I ended up in hospital with swollen neck and ears and a purple incredibly itchy rash from head to toe. It was once once I stopped that I also realised it had made me depressed too. I don't do well on drugs so this isn't typical but I certainly know it changed my mood a lot.
We are primarily a site for people with RA but we do welcome people who have other auto-immune conditions as there is a lot of cross over between symptoms and treatments. I hope you find some answers to your questions from whatever site. "Brain fog" is something that is mentioned quite often on here and is something that we come across talking to people on the helpline as well.
It's not a problem Abe. Sulfasalazine is one of those meds that is used for different conditions & although we may have some members here who also have colitis you'll probably find the Crohns & Colitis site members will welcome & help you more specifically, especially with their experiences of your new med. You may find some of our members may also be on there too!
OK. Thank you everyone. If I do notice a change from switching off the Sulfa, I will post back to let everyone know. I started taking a new med last night. Finger's crossed. I want my brain back!
As an update.... I've been off Sulfa for almost 48 hours. I have had a constant headache for the last 24 hours. It reminds me that I had these headaches when I started taking sulfa for the first week or so. Did anyone else notice this? The headaches are not a big deal, very tolerable. I'm taking this as a positive sign that maybe it is the sulfa giving me brain fog or whatever.
I usually take to s drug like a duck to water , but Sulphsalazine beat me. I felt spaced out, constantly nauseous, actually vomited after food& but determined not to be brsten I stuck to it for 13 weeks. I then went back to my rheumy who took me off it straight away & said feeling that bad was no,way to treat me!
Talk to your Rheumy nurse - they are well used to the side effects of drugs & have often "seen it all before",
It's not your fault ...maybe you could reduce your dose .....ask the nurse. I am sure she will have a solution.
As a final follow up to this topic, I stopped taking Sulfa over 2 months ago. I'm left with no doubt that the Sulfa had caused a sort of "brain fog" to set in. My job, which seemed so hard a few months ago, is back to being routine again. I'm able to stay engaged in conversations for as long as I would expect. Coming off of it, the progress was gradual... there was never a day that I just "woke up". I'd say it was about 6 weeks for the effects of the Sulfa to totally wear off. I'm very happy that that little episode is over.
Reading extensively about this, Sulfa seems to have little to no effect on the majority of people who take it. For anyone being advised to take it, I don't want to scare you off, but for whatever reason the drug does have this adverse side effect in some of us and it is quite detrimental. I just want people to be aware. I hope when this happens to someone else, they will read this post and know. I think my doctor still does not believe me that it was the Sulfa. Oh well... can't teach an old doc new tricks I guess.
Thank you for the follow up reply Abe22. I am having similar side effects and reading this made me feel reassured. (I am being treated for recurring Uveitis as part of Ankylosing Spondylitis)
Thanks for submitting your experience. I really appreciate it. I found that the RA was causing night sweats, fevers, and weird anxiety. The Sulfasalazine did nothing to fix these problems, however I found that Trazadone has worked wonders. My heart used to beat really fast and cause anxiety and paranoia. Trazadone appears to have fixed that. Some people say that Trazadone makes them sleepy. That has not been a side effect for me.
I also had a really bad reaction with stomach pains, sickness, brain fog and finally a horrible dark depression. Consultant took me stright off and took me a few weeks to feel better. Shame though as it really helped reduce pain
Its good to know I am not the only one who is having strange experiences. I am on this med about 7 months now 4 daily. I am feeling the same way. Depressed and anxiety.
I experience unbearable pains and started Omega XL 2 daily and I certainly have a lot more pain free moments. After a few weeks of Omega XL and Sulfasalazine I noticed my depression is more often and also realized that I am more tempered and cannot control my emotions. I even feel like it's not worth living.
This is very demotivating to me as I am an outgoing person very calm and responsible, easy to get along with and now I can't even stand myself.
I started sulfasalazine in April & responded similarly, even when asked by my nurse to try just 500mg. I also had nausea though was prescribed an anti emetic which helped that. I insisted I came off it, I don't give up on meds easily but this one defeated me. I'm fine now, was a few weeks after my last dose. Do talk to your Rheumy about this, there's only so much you should have to put up with side-effect wise & if it's changing your personality I think that's just cause to question if it's really the med for you. I think you've done well to continue on it as long as you have. I started leflunomide soon after & being doing ok on that, a little hair loss but I had that on MTX (which I'm still on) & that settled so would think the same will happen, otherwise no other side effects.
I hope as you need help it's asked of your Rheumy, that he's understanding & realises just how it's affecting you.
Thankyou for posting this. I have been taking sulfa for about a week and a half and I'm experiencing the same cloudy head, anxious feelings and short temper. It's making it very hard to function at work. I think I am going to stop taking it straight away as I need to be able to focus at work & it's making it almost impossible. Glad to know I'm not the only one having this reaction. I have also been getting headaches, I'm hoping the doc can find another option..
I've just found this post and it seems quite relevant to what I've been experiencing. My rheumatologist started me on sulphasalazine close to two months ago and I have been experiencing severe anxiety and paranoia as well as panic attacks due to how young I am and my exams starting soon I'm considering changing medications again but am hesitant as it works well aside from the severe anxiety
Hi--- I started sulphsalazine 3 weeks ago--- my stomach has bloated so much I look pregnant. None of my clothes fit me!!! The headaches I had in week 1 have gone now though.
I know this is an old Post, but am so relieved to read Abe22 story, am back on sulfasalazine for RA and feel like my light has gone out, so depressed and anxious, but have been told that I have to stay on it for 6 months before I can try any biologics, not that any of the biologics seem to be side effect free, so sad that my only choices for treatment for severe RA is a choice of untreated horrendous RA damage or medications with terrible life threatening side effects. I have negatively reacted to every medication I have tried, very despairing.
Do try again, you shouldn't continue on SSZ if you feel this way. I had very low mood, I can't honestly say depressed because I wasn't as bad as my mum in law was but I certainly wasn't my normal self, I was very, very low & withdrawn, I couldn't even contribute here on the forum. I continued on it a few months too long after my Rheumy nurse insisted I did but my GP intervened & it was stopped. Don't hesitate to state your case if you see your GP & are diagnosed with depression.
I started SSZ 3 weeks ago,Im so depressed tears just flow over nothing. It has made no difference to my pain probably worse if any. Have had spots that are so tender that never were and urinary irritation.
Thanks for that I helps a bit to read other peopls stories, My husband started on this medication 1 week ago, his mood is awful, his appetite is gone and when it comes back he is extra moody, he can't even have a glass of wine at dinner and it makes his mood worse, he is usually such a happy upbeat guy the life of the house, but this last week all he wants to do is go back to bed, I'm really worried about him, he says it's ok as long as he's not in pain anymore
I was searching for Sulfasalazine side effects and stumbled upon your post. I fit a similar profile to you and have had almost the exact same side effects. Just curious if you ever found a resolution to this problem? I stopped taking the medication due to increasing issues woth anxiety and depression - but know that my health issue needs resolution as well.
Hi Abe! I have just googled sulphasalazine and panic attacks and came across this site with your message on it. I’m not sure what is going on but I’m feeling the exact same way as you. I know I have struggled with feeling anxious in certain situations where it’s due; but I’m feeling like it all the time right now. Feel like I’m border line going to have a panic any minute and somethings happening to me that I don’t know what is and don’t have control over. I’m not sure if I need medication or a dr immediately to tell me why I’m feeling like this. I almost can’t relax either. What was the outcome for you? I’m thinking I might get off sulphasalazine, I just started it about 3-4weeks ago.
The "brain fog" that I felt while on Sulfa completely went away when I went off it. I remember having headaches for a week or so once I stopped taking it. It took a few weeks, but everything cleared up.
Hi Abe22,I had found this site in regards to my anxiety and depression I’ve been having due to taking Sulfasalazine 4 pills a day for my UC. I had Noticed the headaches at first and then the lost of appetite and then I started having really bad anxiety to the point where I’m so anxious idk what to even think I feel like my thoughts are in shambles all the time. I can usually deal with my anxiety in a pretty positive way but lately I feel like I’m detached with reality it’s self, I’m hoping when I see my dr next week that she can recommend me a different medication and hopefully these symptoms can go away in due time.
I know this was a year ago but having similar feelings and thoughts on sulfasalazine. Been taking it for 8 weeks and feel odd, disassociated and anxious. Did you go off and how did you feel? Did you replace the drug with something else?
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As long as things are hygienic/clean. The OCD was a factor contributory to my RA coming on massive I believe all those years ago .. I was so stressed I could not have everything perfect. Now my RA is much much more under control I am beginning to feel less sleepy when I read and just started a couple of months ago reading the huge pile of books that I had been bought etc, and had got nowhere with. I am not on anything like the amount of pills you are HH but have a few to take still, and an opiate patch on all the time, which also sends you sleepy of course, and seems to fog you re reading and concentrating. I try to keep the room temp not so hot when reading. Less likely to snooze!! I never felt I had a problem on Sulpha or MTX making me feel anxious or unable to process info etc. Felt my sleepiness was exhaustion from over active RA inflammation. Also hectic schedules ... I did a BA on Sulpha and it was a very physical course too and also a physical MA on MTX and read about 500 books on those courses. Couldn't stop reading! Sulpha was a fantastic med for me for 8 - 9 years for RA with no side effects to make me stop it. It just lost its efficacy after so long. Hope your doc/consultant can throw some light on the matter and you don't have to come off it if it is working so well for the colitis. Good luck.
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