Headaches and dizziness

[Jeremycfc]

Hi everyone just wanted to ask has anyone else suffered with headache, dizziness, woozy and feeling generally lousy while taking sulfasalazine,was advised to stop taking it a couple of years ago for a couple of weeks by rheumie nurses because of bad headaches, they cleared up and was told to start them again, been okay up until recently now all the above symptoms have come back, also take methotrexate, finding it very difficult to get through to the nurses at the moment with all the issues with the NHS, just thought I'd put it out there too you lovely people for any advice, all the best Jerry

[Deeb1764]

I had to come off this drug as felt awful headaches and all the other stuff you are getting. Just felt it was not worth feeling that way and the ra nurse agreed.

[Jeremycfc in reply to Deeb1764]

Hi thanks for your reply, what did they recommend you replace it with

[nomoreheels]

I was on double therapy SSZ with MTX but had to come off it, eventually. It was when my Rheumy was on extended leave & nobody would ok my request to stop it so I was on it longer than I’d have preferred. I felt rubbish, more so once I’d reached the high dose so I did persevere to see if it eased off as I so rarely react to meds. It was more very low mood with me, I can't in all honesty call it depression but I don't think I was far from it by the time my Rheumy told me to stop taking it. I know she tore a strip of at least one nurses who wouldn't take responsibility for me coming off it. 

The side effects you give are common ones & ordinarily I'd suggest they may reduce the longer it takes your body to get used to it but you're not new to it, & it is odd they are starting up again after being on it a while. Are you allergic to any antibiotic Jerry? SSZ is made up of a sulfonamide antibiotic & aspirin, in basic terms, there is more to it. It may be some form of reaction to either component?It's one to talk to your Rheumy team about I think Jerry. I wouldn't just stop it of your own volition, I didn’t & was advised I was right not to do so if that's worth anything?

I'm still on MTX, 14 years now. The next DMARD I tried it with was leflunomide, which was also stopped, for different side effects.

I hope you resolve this one way or another. It can be miserable.

[Jeremycfc in reply to nomoreheels]

Thanks for that, something too think about all the best

[sylvi]

I haven't had any of the symptoms you are talking about. I suggest you keep on at the rheumy nurses darling. xxxx

[Liggle]

Hi I been Sulfasalzine for 15years i on 3 50g tablets a day when my Rheumatologist gave me the third one at lunch time a couple of years ago I did feel very tired and headache I continue for about four weeks as it was helping the pain, I got used to them and they do help with a mixture of other drug .l been on steroids for about fifteen year too only a low dose now bloody Rheumatoid Athritus there is no query. Just have to make the most of our life’s we can . Good luck my darling

Elizabeth x

[Jeremycfc in reply to Liggle]

👍x

[gilox]

Was also on sulfazazine, had awful side effects, including depression! Have been on methetrexate no for several years,started with tablets, but had constant tummy problems,was then put on the injections,what a game changer, I still get flares, especially when it’s high humidity last Summer was awful, & just now not great,but I do think it works for me. Good luck.

[Jeremycfc in reply to gilox]

Thanks for your reply, stopped taking sulfzne can't put up with it anymore glad your okay

[Paisley58]

Sorry I hear this sounds like it doesn't agree with you and hopefully they will stop it and find a suitable alternative.I had to stop both drugs as I responded badly to both; side effects quite unpleasant.

I hope your Rheumy team get back to you asap. I hope you feel better soon.🤞

[KittyJ]

have you spoken to your GP? Maybe your bloods need checking if they haven’t been done recently. Just a thought as it could be nothing to do with sulpha.

[Jeremycfc in reply to KittyJ]

Hi,yes bloods are fine just think sulfasalazine just doesn't get on with me ,thanks for the reply

[KittyJ in reply to Jeremycfc]

that’s good but unusual to get side effects after two years, have they gone now you’ve stopped taking it?

[Jeremycfc in reply to KittyJ]

Hi slowly getting there, it takes a couple of weeks if last time is anything to go by, can't get through to rheumatology frustratingly, hope you're well and doing okay, think this website is wonderful being able to help each other with all the experiences we've been through all the best Jerry 👍