Stopped Sulpha & Now A Flare??

[hope-always316]

I finally decided to stop my sulphasalazine because I am convinced starting on it triggered a clinical depression (not the ‘bahh this disease sucks’ kind but the ‘i Think I am going to quit life’ kind) which is very out of character for me and frankly, besides this damn illness which was well managed, life is good to me and I have much to enjoy and be thankful for.

Anyway, I took my last sulpha dose on Sunday and literally within 24 hours already feel brighter, more content, less anxious.. and no tears! (I’ve cried several times a week since I started in sulphasalazine last October)

However........ I’m now having a sudden flare. Right knee and hip feel like balloons of hot lead are inside my skin, I’m limping badly (whereas walked totally fine on Monday and for months before!) and I’m really annoyed.

I did go for a long walk with the family on Sunday but I’ve done this most weekends with no flare up.

Am I simply flaring because I’ve come off sulpha?? Because the thought of going back on it makes me want to scream.

Is this my life choice - depression OR physical disability and pain?

Can’t get hold of my rheumatology team - they’re literally not returning calls over the past two days. Do I se did my GP can give a steroid until I get my meds reviewed? Having for tightly blood monitoring and been all normal (although I expect the next one won’t be!)

Sorry for the half plea-for-advice and half-rant. So upset 😭

[Alderess]

So sorry to hear you’ve gone into a big flare. Sulphasalazine was my first DMARD and worked fine (apart from a nasty taste in my mouth) for months, then suddenly stopped for no apparent reason.

There are lots more options these days. Do see your GP - theymight have another way to contact your Rheumy department.

I have changed drugs several times over the years, and always had a bit of a wait. Do keep trying - you will feel miles better one day, and I hope that day is very soon for you. In my worst flares where I couldn’t move or sleep I discovered an Epsom Salts bath helped a great deal. It at least let me sleep, and that helped my state of mind.

All good wishes

Su

[Hidden]

Hiya

I'd be surprised if you got a flare up that quickly after stopping.

On the other hand sulfasalazine is well known for causing terrible depression. I wouldn't put up with that if I were you. Depression sucks! I experienced psychotic depression on sulfasalazine. Although I've had depression before, I've never been psychotic!! Within a week of stopping I was almost back to normal.

Please don't feel you have to suffer the depression you are talking about. Ask for a change in meds, and tell the doc how that drug makes you feel. Depression is a nasty insidious disease that sucks the joy out of everything.

I filled out a yellow card for sulfasalazine. Too many people suffer awful side effects and don't report it.

Look after yourself.

[Parker16-]

Hi I am going through the same . When I was on medication I was a different person. No confidace , crying and didn’t feel life was worth living for no reason. I had to come off through bad blood readings. The depression has stopped and the hospital said it must be me as they have not heard of any of the RA drugs cousing depression. I am now having bad flare ups and need to go on something else but just don’t know what to do so sufferings in silence at the moment as scared what to try next . Plus can’t afford to loose job.

I do hope you too get sorted soon it’s a horrible battle we face. We just need to keep trying to get the right one for us . Keep us updated. Pam x

[oldtimer]

Have a look at the NRAS website for information on other treatments - there are lots.

It makes sense to find one that suits YOU.

Rheumatoid Disease isn't just one disease but a group of auto-immune conditions that happen to attack joints producing similar clinical findings. The auto-immune conditions are different in different people and work is on-going now in finding out which part of the auto-immune system is affected - but that work is in its early stages, so, for now, it's trial and error finding the correct treatment for you with your individual variation.

[Hidden in reply to oldtimer]

Found it, finally! Hi oldtimer, thats really interesting about RD being a group of auto immune conditions. Do you have any references for info on this? Many thanks

Keren

[oldtimer]

There have been quite a few articles in the last few years identifying specific auto-antibodies in specific patients and research into whether specifically targetting them will privide a better way of identifying which patients will benefit from which therapies.

A couple of general ones I have saved:

thelancet.com/journals/lanc...

sciencedirect.com/science/a...

But I'm sure that if you search for academic articles on the subject, more will appear.