Sulfasalzine and extreme fatigue...anyone have any experience please..

[Sara_A]

Hi all, I have been on sulfasalzine now for about 7 wks and have been experiencing extreme fatigue we think since starting the sulfasalzine.

Not just the normal fatigue that we get with the lupus etc but seriously horrendous extreme fatigue to the point I cannot do a single thing. I'm struggling to do any day to day activities like washing up, cook ironing even when sat down. Just soo exhausted all the time. I've been signed off work sick and I only work 12 hrs a wk from home but cant even manage that!

I'm so exhausted and needing to sleep most days. I'm really struggling to look after the 2 kids who are 5 and 8 yrs my partner works full time and has to do everything.

Has anyone else experienced this and has it improved after a while?? I dont want to stop taking it if its going to start improving. I think I'm having other side effects too such as insomnia.

I'm on methotrexate injections and I've also tried azathioprine and mycophenolate before so I don't want to stop this one if its going to get better.

[Harry19]

Feel for you the fatigue is the worse it’s sole distorying. I hope you improve soon

[vasiliki_v]

Dear Sara,I hope you get better soon. I would suggest that you talk to your doctor, it's been 7 weeks! Dont worry, maybe they will find a replacement that you won't feel extreme fatigue.Is your lupus attacking your digestive system ?

[Sara_A in reply to vasiliki_v]

I finally gave in on Wednesday and stopped it I couldn't go on feeling like that any longer the fatigue was just too much. I thought if it was the sulfasalzine I needed to know so had to stop it. I'm speaking to my gp today and will ring my rheum nurse today to let them know too.When I started the sulfasalzine I had a couple of days of really bad burning in my stomach but that subsided in a couple of days. I have gastritis anyway and take lanzoprazole and gaviscon and I still get quite bad acid reflux.

I have IBS anyway so often have a very bloated stomach.

I don't know if its just a coincidence but my joints have already started to swell and become sore last night but I had to reduce my steroids down to 10mgs the last 2 wks and am meant to be going down to 5mgs next wk and as soon as I get to 10mgs I usually start to flare back up with my joints!

[vasiliki_v]

Yeah so right from the start this medication didn't agree with you at all. When we take medication we know that it will have side effect, but if the side effects become worse than the lupus itself then there is no point😅 Tell your gp that you stopped it and what's a good alternative medication. I take hydroxychloroquine and many people with lupus or rheum, but I am not a professional so I don't know if it is suitable for you too. Also if your joints started to swell already then ask the doctor if you can stay on the mg you are on now and not change it next week until you sort out the other medication.

[Sara_A in reply to vasiliki_v]

I was on hydroxychloquine for about 10 hrs and had to stop in in Nov 2019 as the optician and ophthalmologist thinks I have toxicity in my eyes from it so it was stopped. I've just had a scan last wk at the optician and am due an app st the eye hospital so I'm going to see what's going on and the optician thought there was no actual damage from this new scan they are able to do so I'm going to ask rheumatologist if I can go back onto it as I feel that was the only one that helped with normal lupus fatigue. I have antiphospolipid syndrome too triple positive and inflammatory arthritis. I've tried 2 other drugs which I had problems with so was really hopeful when my joints calmed down with the sulfasalzine but just couldn't live with the extreme fatigue. Not being able to function is just no life really! I've put my steroids back up to 20mgs I didn't even bother asking the gp today as she annoyed me by suggesting that 'I try not to sleep in the daytime with extreme fatigue!!!' I said it's not really a choice I can't really help it! Obviously I won't be asking to speak with her again, not very understanding. I've lived with these conditions 21 yes I'm 42 yrs old I'm a nurse myself and I'm not an idiot

She also said try and use your next wk off sick to reset yourself then look at going back, I said I'm still having to sleep everyday I'm not feeling well enough yet to go back to work I cant even get through a day at home, shower daily, wash up etc

I wish these people could live a day in our shoes.

[vasiliki_v in reply to Sara_A]

Ooh no toxicity in the eyes doesn't sound good! Hydroxycloroquine is one of the most popular treatments for lupus fatigue and arthritis and I bet it would make you feel much better this time. However, I have heard that it rarely causes eye problems, so if your rheum believes that it will cause toxicity in your eye again then it's better to avoid it and find something else..Also 20mg of steroids will kind of help but maybe rheum would suggest going down on the mg slower than the gp suggested if your arthritis is too bad, but again I am not a professional and you probably know more as a nurse! Yes I know very well, I got very upset with my GP this year..the GPs go by the book and dont consider what we feel is best for us, if you feel sleepy then that means that you need sleep. If you feel that something is wrong then it is!! Wow you have it for 21 years, you are doing a great job!And you even decided to become a nurse! 💪

Ps. Don't forget about your mental health..the whole situation must be hard and medications like steroids only make you/us feel more emotional, so don't hesitate to look for mental health support!