Me and sulfasalazine

So I went back on Sulfa 3 weeks ago after 2 weeks off it as too many side effects but decided after the nurse call from hell to re try it. The past 3 weeks have been a mix of emotions and today I have decided I just can't keep taking it.

From migraine styled headaches/palpitations/fever/tinnitus worse/stomach cramps and nausea I have decided it is not worth it. I think for me to cry every day for the past 2 weeks was the worse for me, as this is not me. I felt my mood was changing and I could not see the light and for someone who sees positives more than negatives, it was the final straw.

So let RA clinic know on their ansaphone, as I have a consult next week and today calling my GP to discuss some other issues and go from there.

The photo is of 3 books a good friend sent as been reading up on what foods cause inflammation which can be many or none depending on the person. But then that is like RA each of us so different.

The books for an ex chef make you think of new recipes and been kicking out a lot of soups as I needed a food I could stomach the past 3 weeks and soup was one I enjoyed!

Happy Thursday to you all.

[patsymay13]

Real sorry to hear that Deeb , your certainly going through the mill at the minute but like you say it's no good taking something that's making your life more of a misery , fingers crossed for you that the next med will be the magic one , nice of your friend to send you those books , with me I found cheese and cows milk causes inflammation , but like you say its trial and error with most foods , I try to work on the basis of making sure I eat at least 8 fruit and veg a day with my meals , I guess as a chef you can make more interesting meals , I do hope you get some relief soon x

[Marionfromhappydays]

No one can say you didn't give it your best shot. Sorry this one didn't work out, onwards to the next one.

What lovely friends you have, I bet it will be lovely to eat something rather than soup soon.

Take care and sorry you had such a horrible time x

[sylvi]

Sorry your still suffering darling. I wish i was on something to ease the pain i am in, but there you go i am seeing consultant next month. HUgs darling.xxx

[Pippy25]

Hello Dee, I am so sorry to hear despite your persevering that going back onto sulfa hasn't worked out. Hats off to you for trying it again and hope there is something out there that works for you. A lovely idea from your friends sending the cook book and hope there are some tasty things in there for you to try...take care and sending good wishes your way x

[Lolabridge]

You really have tried so hard with it and I’m sorry that you have suffered so much in the process. I do hope your Rheumy will find something that works for you very soon.

I’m a great fan of soups too and will be making a lot more of them now Autumn seems to have arrived. I have a very large saucepan that I call my cauldron (!) and make large quantities when I’m feeling well so I can freeze portions. These are great for days when I don’t feel well and don’t want to have to cook a full meal. I’m having chicken and veg soup for lunch today and will think of you Xxx

[Hidden in reply to Lolabridge]

I love soup I’m making chicken and barley 😋

[Lolabridge in reply to Hidden]

Nice!

[springcross]

Hi Dee. I know what you mean as I am on my tenth week of SSZ and I feel like I am getting bad late onset side effects. All my symptoms were mild to begin with - nausea, bloating, dizziness, headaches, the tinnitus (in the right ear only) which was quite mild seemed to be a little worse, all in the early days and I felt that I could have coped with that expecting them to cease as time went on. They have all worsened and now I also have a bad taste, gross tiredness, the tinnitus has become a real nuisance and is affecting the right side of my head now and flushing (which I haven't had for a few years since the menopause). My energy levels are almost the same now as before and when diagnosed and also I find that my vision is a little bit affected. I kept thinking that I should try and hang on for the twelve weeks they say it can take but I think that I have given it a good while so I may be ringing the rheumy department next week. The only thing that stops me at the moment is it seems to be helping my joints. Decisions, decisions.

I hope you get some joy next week, it's awful when the only thing that may help is causing you to feel so ill. All the best. xx

[Kags1068]

Hi Deeb

My goodness, you've really tried to persevere with that drug haven't you? I think you are more than justified in saying enough is enough now. If it's causing so many horrible on-going side effects, and is making you that unhappy (as I'm sure I would be too), then I can't see how your rheumatology team can let you continue to suffer. I hope someone gets back to you very soon from the RA clinic regarding the message you left.

Best wishes 😊

[Hidden in reply to Kags1068]

Just taken a call they want me off it and wait only a week to speak to consultant!

[Kags1068 in reply to Hidden]

Thank goodness they've responded. Are you happy with that outcome? Will you be OK to wait a week (I'm assuming without treatment)?

[Hidden in reply to Kags1068]

Yes will be fine sort of used to having side effects now and things not quite working so only a week and got enough pred and co codmol to keep me going!

[Kags1068 in reply to Hidden]

Good, I'm pleased you've got things to tide you over. I hope you can get through the next week ok, and really wish you well with the next appt. 🤞🤞

[Boxerlady in reply to Hidden]

So pleased to hear that - you've waited long enough (well, far too long actually.) Hope you're preparing a list so he/she really "gets" what you've been going through 😉

[Hidden in reply to Boxerlady]

all written down so fingers x and thank you

[Jaxine]

I had the worst stomach cramps, low back pain and nausea on Sulfa. Came off it straight away. Can not take MTX as suffered from rare chest problem. So now on biologics. 3rd one! And now that s stopped working so waiting for what's next to come! Onwards and upwards it s a hard journey at times we just have to remain positive.

[Hidden in reply to Jaxine]

Jaxine I know I was the same with MTX too so hoping I can get some biologics to see if that works for me. Just want to start feeling better.

[Jaxine in reply to Hidden]

Yes of course you do. The biologic route really does help, you just need to find the right one for you. I've been on loads in a short space of time, Humiri is amazing! Just a shame after 9 months it hasn't hit the spot. Usually they add a Dmard with it, but I can t take Dmards. Stay positive, we have no choice you will het there in the end. X

[mistygrey]

Interesting as I had palpitations from sulfasalazine too and my rheumy immediately stopped it due to this. I felt completely groggy and like deaths door on it the short time I was on sulfasalazine.

Waiting to speak to rheumy next week to decide what’s next on the medications list...