Sulphazyne

[ScottishOceanlover]

So after the advice on here I got in touch with my RA nurse who I explained too about how my mood and anxiety was low.she was like this isn't a side affect only 1 in 1000 people get it she made me feel like I was making it up aerrgh

[medway-lady]

Trouble is a diagnosis of RA doesn’t mean that everything is related to RA but it could be. It’s a hard path but could it be due to the shock of diagnosis, or another life event. Perhaps a diversion or activity could distract you.Thats not making light of a situation but sometimes it is all too easy to let RA or indeed any illness become our sole focus every day. I’d suggest a diary might be a good idea and then perhaps a visit to GP. I hope you’re feeling better soon.

[Madmusiclover]

Well, you could suggest to the nurse that you take a break from it and see if your mood improves. I had low mood on this too. Medway-lady makes good points too. Sorry you are suffering atm. It will get better.

[ScottishOceanlover in reply to Madmusiclover]

I did take a break between the two months and when qasnoffnktnmood lifted and so did the anxiety. I. Do. Suffer with depression but I live in the ocean every day and excersise alot so I know it's definitely the. Medication as been back off over a week and feel more energized and that heavy mood has got better but thank you for suggestions

[Madmusiclover in reply to ScottishOceanlover]

In which case don’t take no for an answer. You are your own expert. I understand. All the DMARDS made me miserable.

[Gottarelax]

While I don't think that my mood was affected specifically, I have recently stopped taking Sulpha and find that I have much better energy levels and am coping with doing more and I guess that makes me feel more upbeat. For me, fatigue and mood are very much linked.

[rmros]

How does she know?

[Spanelmad]

Take charge of your medical journey , ask for a change in dmard.Do not wait for it to turn into something chronic!!!

[helixhelix]

That is ridiculous! The patient leaflet lists depression as a side effect, so it does happen. It says uncommon - but 1 in 100 people, not 1 in 1000. So this nurse needs to do a bit of continuing education.

Go back with the leaflet and be politely firm that this is happening to you and it is not tolerable.

medicines.org.uk/emc/files/...

[Olliechops]

I felt a lot better when I came off it. I felt more like my old self and I think we know our own bodies. I had really low mood and cognitive problems whilst on it and I am fine now I am off it. Luckily I don’t suffer from low mood normally and there was no other reason for feeling the way I did. The side effects are listed in the leaflet too. I have a friend who is a pharmacist and she said these symptoms are listed. Even if they’re rare, it doesn’t mean to say we wouldn’t get them. Sorry your rheum nurse wasn’t a bit more understanding.

[Ungarese]

I am another person who had fatigue and overwhelm on sulfasalazine - and struggled on. I was lucky that my consultant listened and persuaded me to try methotrexate ( I had initially been reluctant). I became ‘me’ again within a month and increasingly so and now after 6 months have energy again. Some people have to be those one in 1000 or 100 whose mood is affected by sulfasalazine! Hope you can find someone to listen.

[Joannos]

Oh dear not helpful at all, whether it's a side effect or how you are feeling, the RA nurse should have been listening to you. You can either ring the RA nurse again and ask if there is a counselling for long term conditions or try your GP, see if you can explain to them how you are feeling.

[cyberbarn]

"she was like this isn't a side affect only 1 in 1000 people get it "

There has been some research that shows that medical professionals struggle with basic maths. Or, if you think probability and percentages are not basic, more advanced maths too!

Those figures used for side effects are population wide, part of the epidemiological evidence. But each person sitting in front of a clinician isn't a population, it is an individual.

I have what doctors like to describe as a 'rare condition' that affects 1 in 20.000. It isn't actually that rare. And not only that there are clusters of people so some doctors will have loads of people with this condition present to them.

So when a GP says to me you can't have that, it is rare, I tell them it is rare to win the lottery, but people do!

[ScottishOceanlover in reply to cyberbarn]

Very true. I mean I as so. Active I swim in the ocean all year round cycle walk do all am Supposed to work full time in a hospital very hard going i keep my mental health in good check I have fibromyalgia too for for the last 7 years I know my body and my own mental health it just amazes me that no matter what I know it was this medication that really did affect me...I really appreciate the comments though as it good know that I am not the only one who has had a side affect rare or not..

I get really nervous when I. Go to see my consultant why I don't know why I think the look at me and think you don't look like you are in pain etc I choose to not let this thing rule my life that's all

[RAGuy]

So, you are not allowed to be the 1 in the 1000?

This side effect is why I came off Sulfasalazine. Twice! (I tried it again to see) Personally, I would complain and ask to see a consultant. You are the expert on you. Be firm but fair, you do not deserve to feel like this.

Best wishes

[Canaries]

I’ve been really interested to read your post on sulphasalazine. I’m due to commence it next month, I’m on mtx25, subcut, have been on this one drug 9 years, worked well for a long time but not any more. I need to try it before any other drug is considered and wonder if many people have more positive experiences?

[ScottishOceanlover in reply to Canaries]

Think everyone is different I have attempted it twice now as I thought maybe it was just me but my experience wasn't great my mood became very low, anxiety went through the roof and when I stopped doing anything I fell. Asleep.I am. Also on subcut mthx but I have been advised to. Stop taking the. Sulphazyne and try something else.

You may be ok with it but you won't know until you have tried.

Good. Luck

[Canaries in reply to ScottishOceanlover]

Thank you. Good luck to you too.

[Boxerlady in reply to Canaries]

It's been great for me. It was added when Methotrexate and Hydroxychloroquin weren't quite controlling things and for me it was the missing link - things really improved when I started on Sulphasalzine. It's like any RA drug - some people love it, some hate it; personally I try to stay optimistic and assume that things will suit me and so far I've been lucky. Hopefully you'll find the same but remember that if you don't try, you'll never know 😉 This sort of forum is invaluable for the support from fellow sufferers/travellers but inevitably, we are inclined to post when having problems and needing help so I try to remember that the many people out there who aren't struggling are probably just getting on with their lives and so are too busy to post about their positive experiences.

[Canaries in reply to Boxerlady]

Thank you for that, good to know it's working for you. Mtx was fine for me, no side effects, but it's not been working for a while. Medics have finally listened to my concerns and looked at the damage to my joints!