Third time lucky

[Lauranorder]

I was diagnosed with RA just over 2 years ago. Initially I was put on methotrexate but had to be taken off because of constant chronic mouth ulcers, about 30 of the suckers 😖 Then I went onto Hydroxychloroquine, turns out my body refused to dissolve/absorb them 🤨 so now I’ve been put on Sulfasalazine. I wonder what these have in store, it’s beginning to feel like nothing I take will ever agree with me...🤪 hey ho onwards and upwards 😁💊✅

[MoniqueB]

I can commiserate Laura. I have been on a number of different medications (will soon be on yet another). But, as my rheumy told me, "While it may take some time to figure out what works best for you, we'll get there in the end." According to her, experimenting with different medications isn't uncommon for RA patients. Anyway, onwards and upwards indeed! I bet you're very happy to be rid of the mouth ulcers. Thirty is a lot!

[Hidden in reply to MoniqueB]

I am the same too quite a few of us are going through a varied mix of drugs to find the one for us 🤪

[springcross]

Hi Laura. The thing with all the meds is that they affect different people in different ways. Some people get on with certain meds whilst others haven't been able to tolerate them. It's best really to wait and see what it does for you rather than expect it to react on you in a bad way as it may have done with someone else or vice versa. I hope it works for you as it's such a miserable time getting a med that suits you. Good luck. x

[helixhelix]

Hope it is 3rd time lucky....I was on sulpha for 8 years as part of triple therapy. Worked fine but beware the orange pee....

[Lauranorder in reply to helixhelix]

I was warned about the yellow/orange pee and tears, we do see life eh! 😁

[Simsey in reply to Lauranorder]

Hi, you mentioned orange pee, I can tick that, but tears? Is that due meds Sulph? I’m interested as burst into floods of tears regularly x

[Lauranorder in reply to Simsey]

That’s what my rheumy nurse told me but I have yet to cry to find out 😁

[Neonkittie17 in reply to helixhelix]

Just said that below!! I used to drink quite a bit of water so it wasn’t so bad.

[Neonkittie17]

Sulpha was my first RA med and worked a treat for 8 years. Can make your urine a bit orange but I drank more water and could be an issue with contact lenses as it can colour them slightly too I was told. I’m not a contact lens wearer. Other than those two issues the only thing I’d say is that higher dose can make some people sun sensitive. I never had an upset tum or side effect or bad blood test in 8 years. It just wasn’t strong enough to hold back my R.A. which got worse after 8 years. Initially I was really crocked and couldn’t walk and after 3 months of being on Sulpha I was able to walk up Snowdon and back! Proves how good Sulpha was and how it worked well for me. Hope it works well for you. Good luck. 💗

[helixhelix in reply to Neonkittie17]

I forgot the sun sensitivity! That was a nuisance, but if I was careful qnd built up slowly it wasn’t too bad. And it took a few month for my stomach to become friends with it, but we got there in the end.

[Neonkittie17 in reply to helixhelix]

I never felt the tum issues so was alright there. If you wear a high SPF it really helps.

[Hidden]

Hi Lauranorder am just new to RA so can't really offer any advice been on sulfasalazine since November so far so good hopefully this continues and hopefully works for you

[Kentishman]

Unfortunately, all, of the medications I tried had side effects and indeed I rejected Sulphasalazine because of them. My methotrexate mouth ulcers subsided if I took 5mg iron tablets in the preceding four days of the methotrexate. There were other side effects for me with methotrexate including headaches and fatigue. What I learnt is that if I persevered with a new drug for at least six months, the side effects lessened over time and my body became tolerant to the drug. In hindsight, the same may have happened with supha but I was searching for the drug I could tolerate from the get go. I have been on methotrexate for six years now and I have no side effects now - my body tolerates it provided I take the iron tablets. Hope this helps.

[Lauranorder in reply to Kentishman]

I wish I’d been able to stay on mtx because my RA definitely felt better. But despite being on the highest dose of iron tablets continuously, the ulcers got worse. I then developed mouth blisters and oral thrush. It was time to call it a day 🙄

[Hidden]

You will get there... diagnosed 5 years ago but going ok 3 years ago things really got out of hand . Been on 3 Dmards one Biologic all I had problems with now on Baricitinib and now day 66 a real improvement.. it happens just gotta keep trying x

[Brushwork]

This will resonate with many of us on here... Finding a medication or combination of meds, that (a) your body tolerates, and (b) that is actually effective at controlling the RA, is a battle well known and bravely fought.

... and then, just to keep us on our toes a medication that works well for us, suddenly stops working.

One step at a time and enjoy the good times, when you have them.

Go gently

[Kentishman in reply to Brushwork]

Too true. 😊

[Monkeysmum]

Hi Lauranorder, just wanted to say I love the name! Good luck with the Sulfa, keeping my fingers crossed at this end for you, keep us posted. 😀

[KittyJ]

It is difficult when you’re trying to find the right drug or drugs for you but there are lots of drugs out there now and new ones coming all the time to try. Fingers crossed this is the one for you🤞🏻

[stbernhard]

What a very good and positive attitude to have. I believe that being pro active, using self management and accepting RA is a fact, plays a big role in living an active, rich life with RA. I have everything I can crossed for you.

[2bichons]

I so hope this next med works for you! Not a fun disease at all!