Just diagnosed

[angelacorcoran]

Hi all, I have just been diagnosed with RA, I'm on my 4th week and full dose (4x500mg) of sulfasalazine and was wondering if anyone else us on this, I don't know much about RA atall tbh, thanks in advance x

[oldtimer]

Welcome to this forum, but sorry that you have had to join it! You will find lots of people are on this treatment. If you put the key word into the search box, you will find masses of information, also look at the NRAS site for a more balanced view!

Keep in mind that most people only post when they are having problems, so the forum does present rather a negative view - whereas most of us are just getting on with life on our treatment as well as we can, and forget to post when things are going well. Just to cheer you up (I hope!) my sister who also has RD (Rheumatoid Disease) has just had some joint replacements at her knuckles and is now planning a tour around the south-west to Salisbury, Exeter, Torquay and Plymouth by train at the age of 80years. So there is life to look forward to.

[angelacorcoran in reply to oldtimer]

Thank you for your reply, it's all a bit overwhelming x

[Hidden in reply to angelacorcoran]

Welcome to this forum. You may not know this yet, but joining this group was the best decision you have made. Having RA is scary, and we are all just a message away to support you. Someone is always awake to speak to you as this group has many members from around the world.

RA is very overwhelming at first. Allow your rheumatologist to guide you through this difficult and overwhelming time in your life. As time passes, you will be strong enough to help yourself by asking questions and figuring out what works for you. You will be OK once your meds start to work.

All the best to you

Sue

[8080 in reply to oldtimer]

Tour, old timer? Is your sister a famous person? I'm just being curious ( nosy )....just wondering.

[oldtimer in reply to 8080]

no, not famous! but she lives in France.

[8080 in reply to oldtimer]

That's famous to me! Lol

Chris

[Rachfaul]

Hi, I've recently been diagnosed with psoriatic arthritis-pretty similar to rheumatoid as far as I can gather! I'm due to start sulfasalazine next week, have you had any side effects? I'm just trying not to think too far ahead otherwise it does get a bit overwhelming. I was a bit freaked out (and still am at times) being 35, wondering what the future will hold especially with a young family but I figure there have been vast improvements in treatment and things continue to be researched.

Hope you start to feel better on the medication soon x

[angelacorcoran in reply to Rachfaul]

Hi rachfaul, I was really worried too about the medication and everything really and i asked for a second opinion on the rheumatoid diagnosis, which I received 4wks ago and was the same, though it was explained a lot clearer to me and also agreed with me that I didn't have to take the steroids while the sulfasalazine worked, I'm in my 4th week taking it and my only side effects are mild nausea a sore throat and thrush. I'm feeling a lot more pain though and fatigue but I'm assuming that's because the disease is pretty active just now, not sure if any of that helps as I'm all very new to it myself x

[AgedCrone in reply to Rachfaul]

Hi Rachfaul.......

I know it's difficult when you read some of the side effects of a drug you read about here...but i have learned over 18 years with RA that 'Wait & see' is the only way to go!

Put out of your mind that xyz won't suit you.......if you get stressed you'll feel ill on anything.....so try the Ssz with optimism & look forward to it suiting you!

Good Luck!

[Rachfaul in reply to AgedCrone]

Thanks AgedCrone, it's easy to get wrapped up in worries but this site has helped me see there are plenty of people living a full life and doing well. Thanks for the encouragement xx

[nomoreheels]

Welcome Angela, sorry you've needed to seek us out though. It's more unusual nowadays to be prescribed sulfasalazine as your initial DMARD, was any explanation given for doing so I wonder?

Steroids are often prescribed when first diagnosed because the DMARDs don't work immediately, the likely reason you're in pain & fatigued. It's just a short course so there aren't any of the more common side effects of longer term steroids but they would have brought your pain & inflammation down whilst waiting for the SSZ to work, which could be up to or longer than 12 weeks. At my diagnostic appointment I was prescribed a DMARD, a month's course of corticosteroids & a couple of NSAIDs & responded well, I could walk again!

I'd consider it or maybe talk it through with your GP or Rheumy nurse. They do help, honest. 😉

[angelacorcoran]

Hi thank you for your reply, no they didn't say why they gave me sulfasalazine, the rheumatology nurse has just phoned me back and I have am appointment next Tuesday with her x

[Hidden in reply to angelacorcoran]

I have no problems with sulfasalazine I've been on sulfa since the summer of 2015. Some people have problems with this drug, so if you notice something odd about your skin like a rash or other markings phone your doctor.

My husband also noticed that sometimes my breath smells like sulfer, so I always have mints in my purse.

[Moomin8]

Hi- I've taken 4 sulfasalazine a day for some time now- no I'll effects. Good luck with your journey; I'm sure all will settle down for you in the very near future. We're all here to support you. Remember- there are no silly questions so just ask away😁

[dwsurquhart]

I was on sulfasalazine for almost a year. It was was the only DMARD that did not make me feel sick. That was the positive. The negative was that it did nothing for the inflammation the doctors were trying to treat. My crp levels were around 80 at the time.

Are you also on prednisone?

You may find the doctors are going to double up or tripple up medications.

Mine started with prednisone, methotrexate and plaquinil. The dropped the plaquinil for ledlunomide. Then dropped ledlunomide for sulfasalazine. The dropped the methotrexate, and started humira while still on prednisone and sulfasalazine.

Keep a journal daily on how you feel while taking the medications and relay and problems to your doctors. Do not try and stick it out if not working within around 6 weeks.

Cheers and glad to have you as part of this RA club.

Scott

[Lesley_ann]

I've been on sulfasalizine since 2002, so a long time now and I'm on 6 x 500mg daily. I had mild side effects for a few weeks but they have worked really good for me I was then put on the trial for anti TNF Embrel a year later and been on that ever since still staying on sulfa.

It's only the last year or so that it doesn't seem to be working so well for me ( mainly because I have had a lot of infections and have to keep stopping and starting Embrel ) The only thing now I have to be careful off having been on sulfasalizine for 15 year's is it's thinned my blood so if I have a cut or blood test I just need more than a sticky plaster.

Enjoy a sunny day Linda

[jlmack]

I'm on Sulfathalazine (same dose as you), full does hydroxychloroquine and MTX 25mg. I'm sure there are side effects to all drugs but to be honest I'd rather have the side effects then the damage RA does. My Mum had RA, diagnosed in 1979, and the damage done to her joints was horrendous, the days before DMARDS and biologics.

My advice is to research as much as you can through NRAS and Arthritis Research. Knowledge is power, especially when it relates to your health.

PS I'm not sure what side effects there are, as I've never read The side effects info 😂 too scary and probably too many with all the drugs I'm on. I just take each day at a time. Even paracetamol has side effects 😏

[Peachbby]

Hello,

I am new to this forum, just joined couple days ago, but had RA since 1999, diagnosed in 2004 (took about 5 years) as my symptoms really did not worsen until 2003-2004. One advice I would give about RA or any autoimmune disorder is that it is very individualized presentation. However, I believe that since you are very newly diagnosed, look into changing your diet. Diet is very important as certain foods may be triggers. You need to definitely eat whole foods (cut way back on any processed foods, especially sugar and artificial stuff). I continually work on eating as natural as can be. My flare ups seems to coincide with eating sweets. I don't cut out sweets, but I do watch it. I've heard of people being in remission just by changing their diet. Lots of greens (antioxidants)/veggies and lean meats/proteins. Anyone on prescription medication should also cut way back or abstain from alcohol as this puts the liver at risk and every prescription gets processed through the liver. Take care.

[angelacorcoran in reply to Peachbby]

Thank you for your reply x

[Rocky07]

Hi angela sorry you have been diagnosed with ra I have had it since 2002 I just joined this site not long ago it is a great site to see what others have been through abd advice but just remember one thing if you see something that interest you and you want to follow it up and do your own research and what you read from that person query them further after you have done your research on things you wish to know and remember our bodies are not all the same just to add further I have been doing research on ldn (low dose naltrexone) which is very promising with little side effects if any but as I said do your own research and what you read take it on your perspective as everyone has different treatments and some different opinions I wish you great health