Hi all
Just a quick one
Finally had 4th lot of blood test done when feeling quite ill and they are showing inflammation levels above the norm, enough to possibly be prescribed sulphasalazine.
The Question I have is, will this medication make me feel better in a few months time ( have bad flu like symptoms , horrendous fatigue and three painful joints,
and are the side effects bad ??
Any advise is always welcome
Thanks castroll
I have been on Salazopyrin for five years. I have had no side effects except orange urine. Unfortunately it is not working any longer and I am taking Imraldi as well. I hope that it works for you. Good luck.
Thank you so much for the fed back it's so helpful
Sulphasalazine helped my joints and fatigue levels a lot, but I developed an allergy to the asprin component and had to stop taking it. Everyone is different though, well worth a try.
Hi, I have just started on Sulphasalazine in the last month. You are started on a loading dose. This is my first week on the regular dose of four tablets a day. I usually have side effects with all medications but can honestly say I have not had any side effects with this medication to date. It is a little too early to tell if it working as it is can take up to three months to feel the full effects. So far so good for me though.
Hi
Thank you so helpful, can I ask has the rehumy doctor prescribed any other anti inflammatory meds or steroids/ pain relief along side the salphasalazine to help in the period it takes to start working
Thanks castroll
I was given a steroid injection to help whilst the Sulphasalazine takes effects. I have also been on naproxen long term too as well as co codemol too.
Hi thanks again
Good to know
Castroll 😀
Hi sorry me again
Are u still taking naproxen and pain killers along side the sulphasazine
Thanks
Castroll
Hoping that I may be able to reduce my Naproxen in the future but still taking full dose at the moment. Not taking any additional pain meds though for a couple of weeks now. 😊
You are really welcome. Happy to help if I can. I too have flu like symptoms, chronic fatigue and several joints affected. I do feel better than I did in June so really hoping that Sulphasalazine is going to be the way forward for me. The steroid injection made me feel much better but think the effects are starting to wear off a little now. I have not had to take my co codemol though since so that is a really good sign. Hope all goes well for you.
Thank you so much
I am still taking the naproxen full dose at the moment but not needed the pain killers over the last couple of weeks. 😊
Cool I now know so much more than I did yesterday thank you 😃
Hello, I have been on sulfasalazine for approximately 10 months. It was ide affects when i started. But i also have to take other inflammation meds. I don't swell up a lot like i used to but i still have issues. I think Sulfasalazine helped but i dont know if its enough now. I wil know soon how my symptoms when i have more test real soon. But i have been on other RA meds before this one an it did help me the most without a lot of affects. Everyone different so i hope it works for you. Best wishes. Hope you feel better soon.
Sulphasalazine was my first drug 28 years ago. Before that I'd just had an anti inflammatory and pain killers for about 4 years.
Sulphasalazine (4 a day) worked well on its own with the odd flare (about yearly) for about 8 years. Only side effect was yellow urine.
After that others have had to be introduced along with it to get things under control.
Wishing you well if you have it.
Thanks
Hi just to reiterate, besides the yellow urine I'm fine on sulfasalazine and hydroxychloroquine and off all pain meds unless I get a flare!!
I do take a probiotic daily and 2 turmeric and black pepper capsules per day as well.
I work full time and exercise daily again now as well.
Good luck, I'm sure you will be fine.
Thank you, I also need to excerise, but feel to I'll at moment, what excerise do u do, I also work full time
Hopefully you'll start to feel better soon. I used to run, only 5k but I did that at least 5 times per week. When I got RA, my feet where affected and my consultant told me no more running, I got myself a decent elliptical machine and go on that daily, it's like running but much lower impact, and walking, my Fitbit is my saviour!!
Hopefully as soon as the meds take effect, you will start to feel better and you can start doing the things you like again. 🤞🤞
I never got up to the full dose and came off this after four weeks
I had three different skin reactions. Watch out on your body for any spots or lumps or skin problems. I have scars on my legs from the skin bumps that will never go away
Unfortunately that alone didn't work for me, I now do a methotrexate injection and Benapali injection weekly along with the sulfa, I didn’t have side effects on Sulfasalazine, but by the time all the other meds were added then side effects kick in🤢 hope it helps you though 😉
Thank you so much
I didn't like Sulfa at all.
From day one I felt ill which led to dizziness, high blood pressure, heartburn. If you don't like it and feel it s not for you then stop it. Speak to your GP maybe for some support or advice as well. My rheumy was slightly miffed that i d stopped, and asked me why didn't i go to A&E but its your health and body ultimately. We re all different though.
Couldn't agree more.
Considering the time spent waiting for a rheumy appt, it's sensible to stop taking meds, when the side effects start outweighing the benefits.
I have been on Sulphasazine for a few years now and take it with hydroxychloroquine and intermittent Naproxem and Co-codamol all the time. It has kept me sane with no side effects ya other than yellow urine and thin hair. Methotrexate made me terribly ill and I could not take it. We are all different. Good luck. Xx
Thank you, for your kind reply
Didn't work for me at all. I also completely lost my sense of taste (rare side effect). That led to weight loss and I was already slightly underweight! Hope it works for you
Thank you
I have been on Sulfasalazine for many years, the only side effect I have is orange or bright yellow urine and sensitivity to the sun. I did have headaches when I first started it, but they were manageable thankfully . My daughter was not able to take it for her headaches were severe. I take it along with other DMARDS, Leflunomide, Azathioprine, Hydroxychlor. I also take a biologic Orencia which is infused every 4 weeks. I am hopeful it will help you to have less pain.
Thank you your repky is most helpful
Hi, When I started on sulfasalazine in June 2019 from two tablets and increasing to four a day prescribed by my rheumatology specialist, fortnightly blood reports showed that my sodium levels had started dropping. Numbness, pins and needles in my feet got constant and worse and I did not sleep at all for few nights until the doctor reduced the tablets to two. However, swelling of my fingers has eased down whether with methotrexate injections or combination of sulfasalazine and methotrexate.
Hardev
I had been on Methotrexate only for 7 years, about 2 months ago the methotrexate was reduced and 4 sulphasalazine per day added. I feel terrible with it. I always experienced nausea with the methotrexate but a least it was once a week only. Now I get nausea with the methotrexate as well as daily nausea with the sulphasalazine. I do no like it at all and will be asking for a review.
After three months on MTX and HCQ and two months on prednisolone, SSZ was added because there was still some disease activity. I only stayed on the SSZ for six weeks because I was getting some tinnitus and I asked to stop. I'd had moderate GI effects from the MTX in the first three months, but none from the SSZ. There are none now from the other drugs either. I'm currently trying to taper the prednisolone and hoping that stopping the SSZ won't scupper that.
Give it a try and just be alert to side-effects. All our treatment should be by negotiation, so don't be afraid to tell your consultant how you are affected by it.
Good luck!
I will keep that in mind, I find it hard to tell the doctor's what I need, but I am now writing everything down so I can go over points with the doctor's and not miss anything
Thank you
Good policy, the notes, as many, myself included, experience lapses in focus, due to the condition, the meds or both, making it difficult to deal with all the issues.
Typicaly, I forgot to add, in my own opening comment, that Sulf exacerbates an existing breathing problem and gives me chronic heartburn and indigestion.
Be firm, but polite, as some rheumies need persuading. Lol.
I'm on sulphizine and methotrexate and they seem to work well together started sulphizine about 6 months ago, felt sick at first but gradually increase does and ok now. I hope it works well for you. Best wishes.
Thank you, did the nausea make you dizzy ??
Thank you
At first but didn't last long, I started with 1 tablet in the evening and after a week 1 in the morning then I was supposed to go up to two twice a day but I stayed on one twice a day till side effects settled. It was worth it in the end for me, I hope it goes well for you.
Thank you so much
Right now and for the last couple of days I've discontinued all of my meds, except for Sulf, (5 tablets) trying to assess if it's actually doing the job effectively and what side effects it's bringing about.
Sadly, I have concluded, thus far, it ain't up to the job any longer.
While it has a partial control of the inflammation, it's nowhere near enough, considering I'm constantly
nauseous, feel bloated (although my appetite is suppressed) feel I'm imflammed internally, have the runs and my dreams are still fairly disturbing, which is a bit rich coming from me. 
While foregoing pain meds, in order to prevent them enhancing any side effects, I'm reaching the point where I'm considering if I can put forward RA as a crimimal defence for gnawing on anyone's face for annoying me. Lol.
We're all different (Many reading, at this point, saying to themselves "Gnawing faces? Heaven's forfend, the man's insane!" Others holding their own council, while thinking: So it's not just me? Lol), so it's trial and error, as it is for all of us, I'm afraid.
Sulf worked remarkably well for me a few years back, did so again, up to early last year for a while, but is rapidly losing it's efficacy at the moment.
I guess you'll have to weigh up your personal pros and cons, but I wish you well.
Love your words, thank you
Just doing my job, Ma'am!
I have been on Sulphalazine for over 3 years. I take 2 in the morning and 3 going to bed. They did up it to 3 morning and 3 evening but wasn't feeling too good so reduced back to 5 a day.
It must be doing some good as I can get about a lot easier although my hip is complainig and waiting for results of an MRI scan poss replacement hip.
Must have monthly blood tests or doctor will not do my repeat prescription.
Also taking Cimzia injections once a fortnight and amitriptyline for nerve pain. Have less flare ups.
Sulphasalzine apparently is used for cancer patients and also works for arthritis. Don't like taking all this medication but hey ho.
All the best x
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