What works better?

[Jules13]

Sulphasalazine or Methotrexate? I'm only 8 weeks into diagnosis and on Sulphasalazine which doesn't seem to be doing anything. Other RA sufferers have asked me why I'm not on Methotrexate? I don't know. My specialist decided for me, but now I'm curious. Which has worked better for people?

[helixhelix]

There's not really a "best" drug as people's reactions are so individual, so no way of telling in advance what will work best for you. Generally I think the rheumy chooses what they think would be most appropriate for you related to the level of activity of your RA and your personal circumstances.

Sulphasalazine and/or Hydroxychloroquine are usually described as the best drugs to start on if you have a moderately active RA. Your age is also a factor as I think these are both ok if you want to have a child. Methotrexate and Leflunomide are considered to be stronger drugs for more aggressive disease - but of course they are also more potentially toxic. So if you don't need it, why put you on the more toxic drug?

8 weeks is still early days for you, so give it a chance. I'm on both drugs (and hydroxy) and it took nearly a year for things to really settle down.

[Jules13 in reply to helixhelix]

Most people have said it takes a year or so to get the right drugs for the right person and that freaks the hell out of me. I've only been RA diagnosed for 8 weeks and have never felt worse. I can't imagine feeling like this for a year. How does anyone survive? I work for myself and have only worked 2 days in 2 weeks as feel so crappy. I couldn't survive much longer without work.

[helixhelix in reply to Jules13]

Errr, yes it's shit. Sorry.

But the first months were the absolute worst, as my RA also took off like a charging bull and just got hugely worse very quickly. I know it was the RA not the drugs as it started accelerating in the period between being referred to a rheumatologist and getting the appointment.

It's a fine line to determine whether to tough it out with drug X or demand something else. As things can change a lot as you get used to the drug. MTX was awful for 9 weeks, Sulpha gave me chronic wind & diarrhoea for a few months, and hydroxy had no side effects at all. But now I take them all with no problems and have been in remission for years. But it's a personal choice that only you can make.

However, what I do know for sure is that stress will make it all worse...try to find a little bit of calm every day.

[Jules13 in reply to helixhelix]

Yes, I've been meditating for the stress and that has been hugely beneficial. I guess I just have to tough it out for a while. Keep everything balanced and don't stress!!! Arghhhhhhh...

Thanks so much for your kind words x

[Neonkittie17 in reply to Jules13]

I've had both meds and Sulpha and Mtx are not known for being fast to work in general which other people have said in their posts. It took 8/9 weeks to feel a real improvement with both and then a while to get stronger and fitter again but I had 10 very good years on Sulpha and presently Mtx is prescribed alongside my Rituximab. It's so hard when you are wanting a faster result I know. Sulpha returned me to great mobility after being housebound and seized up and I got very fit again. I climbed Snowdon after about six months of being on Sulpha so there is the proof it works well! 😀 Reason I changed was that it caused a reaction in the sun but no reason whatsoever to think it will for you .. I'm a sun sensitive person anyhow! My rheumy felt I could be better than I was and and put me on Mtx. Neither have given me any real adverse affects. Like any med you need a little while to adjust. Good luck! x

[Jules13 in reply to Neonkittie17]

Wow, thats inspiring. I hope to get my fitness back too. Hate being all swollen nd bloated feeling. Ugh.

[Neonkittie17 in reply to Jules13]

I did hope it would make you see that Sulpha can work so well! x

[Jules13 in reply to Neonkittie17]

were you on hydroxychloroquine as well as the sulphasalazine ?

[Neonkittie17 in reply to Jules13]

No, Sulpha held it by itself as I had had a few steroid shots before starting it to tide me over and 20 years ago they didn't tend to do much double or triple therapy treatment with the meds.

[Hobbledehoy in reply to Jules13]

Mtx takes 3months to be effective, on average. I have aggressive RA & was stuffed with high-dose codeine to keep me going until the Mtx took hold. Worth the struggle to reach blissful lack of pain. Good luck. Hang in there. And don't be afraid of using specialist nurse & GP support as much as you need to.

[Jules13 in reply to Hobbledehoy]

Did you work while you were going through the hideous 3 months?

I'm self employed and finding it such a struggle. Plus I'm buying a house and living out of a suitcase. Not making it easy for myself right now that's for sure. X

[Hobbledehoy in reply to Jules13]

Yes I did. But I only formally work part-time, though I am involved in many activities incl voluntary work. I just pushed on through - though I know every tiny place in the district to allow a sit-down! You are under far more pressure in every way, by the sound of it. If you could seriously review your situation and manage to cut back wherever at all possible, it would greatly benefit you. It doesn't last forever, it only feels like it! Best wishes.

[Neonkittie17 in reply to Jules13]

I don't know how you're doing it all .. You are very strong. xx

[Lesley_1 in reply to Jules13]

My Rheumatoid settled down after six months and I managed with a five year old and a six month old but in a way I was lucky, because I was recently divorced and a single mum I got the single mothers payment so I survived.

Rest when you can, give your body and the medications time to work.

If the kids are old enough to play for a bit, on the weekends, have an afternoon sleep. Try to care for yourself as you would for a friend. Try not to stress as that makes it worse.

[Jules13 in reply to Lesley_1]

I'm also in the midst of buying a cottage so the stress levels are ridiculous!!!

[Nettac]

I tried sulfasalazing for about four months before quitting it. I had palpatations, low blood sugar issues and intense pain. Got worse on the higher dose. I then got terrible tremors. My white cell count was also dodgy. The worst thing for me was the appalling depression...definitely drug induced.

You have to decide when enough is enough, and how long you are prepared to give the drug a fair go. I felt much better when the drug was stopped, so clearly the drug was the problem. Some folks do fine on it.

I've been on leflunomide for about eight months. With a two week break after gut issues. I've had three flare ups since being on it. Personally, I think eight months on a potentially toxic drug is a long enough trial. But others may say differently. I'm waiting to see what else will be offered (if anything).

It's difficult to say which drug is best, since we all react differently to them.

[Jules13 in reply to Nettac]

the tremors I've had too but mostly dizzy, nausea, feeling generally flu-ey, fatigue and depression. When I reduced the sulphasalazine it helped but then she's asked me to increase it myself when I was feeling ready and I feel shite again. But if I go back down on the dosage then I'm not giving it a chance am I?

[Nettac in reply to Jules13]

Depends how long for I suppose. I tried, but just felt bloody awful.

[Jules13 in reply to Nettac]

I'm going to give it another few weeks until my next appointment. I don't quite understand the hydrochloroquine part. What does that do that the sulphasalazine doesn't?

[Nettac in reply to Jules13]

No idea about that one. Sorry. Someone else will though.

[helixhelix in reply to Jules13]

Each of the drugs works on a different bit of the immune system. For some of them the exact way they work is not totallly known, but the immune system is so complicated that it's slightly guess work as to which bit of yours has gone wonky, and so which drug will help.

I'm on 3 drugs. The first MTX helped a fair bit, but then had hydroxy added which accelerated the positive effects, just not enough. So then added in Sulpha too. I'm on max doses, so I've tried dropping down doses of one or other of them, and it all goes pear shaped again no matter which one I start to drop. So for me it's the combination that makes the differences.

[Jules13 in reply to helixhelix]

Hmm, that's interesting. I think the UK treats it slightly differently than the US. Where are you from?

[helixhelix in reply to Jules13]

I was living in UK when diagnosed & put on triple therapy. Now I'm in France, where my current rheumy is happy to continue with it. She's a young rheumy and tells me that triple therapy fell out of favour in France when biologics appeared but now it's back as they've réalised that it can work as well as biologics for many people.

[Mandy8175]

I am on both, 6 months on sulfa and 3 weeks on mtx. My rheumatologist tried plaquenil first, then sulfasalazine, and then added methotrexate. I think they try to use safer meds first, then add methotrexate. Methotrexate used to be the go to drug, but there are newer meds with less side effects. Every rheumatologist has different preferences.

[Jules13 in reply to Mandy8175]

I think my specialist said there were less side effects with sulphasalazine so thats what we started with x

[Mandy8175 in reply to Jules13]

Plaquenil messed with my ears and hearing,so I changed to sulfasalazine. Sulfasalazine gave me a headache the first few days and cottonmouth every time! BUT sulfasalazine didn't cut my inflammation enough so we added methotrexate. I, literally, just took my third dose of methotrexate today. The first week the side effects drove me to the bed, last week was a little better, and today the nausea is just starting!

How long until your next appointment? Are you experiencing any side effects?

[Jules13 in reply to Mandy8175]

Oh bloody hell, I almost forgot about the dry mouth. I feel like I haven't drunk any liquid every time I speak and hear that hideous clacking sound of dry mouth. I am drinking loads of water and nothing helps. So could that be the sulphasalazine or the RA itself?

[Mandy8175 in reply to Jules13]

I have only had the desert in my 👄 since the sulfasalazine!

[Jules13 in reply to Mandy8175]

Oh crap. Haaaaaaaaate it. Clack x

[Mandy8175 in reply to Jules13]

Ask the rheumatologist if there is anything that can be done, but it does get better!!!!! I don't suffer as bad as I did the first month!

[Jules13 in reply to Mandy8175]

It's been 2 months and nothing has improved! I will ask the RA nurse in 2 weeks. But I actually think I had the dry mouth even before I started medications. She said it might be Sjingens disease or something.

[Mandy8175 in reply to Jules13]

I'm not sure, but I think mine actually started with the Plaquenil. I will be at the rheumatologist in a week so I will ask!

Hopefully the rheumatologist will find your combination of meds to get the inflammation under control!

[Jules13 in reply to Mandy8175]

I hope so too xx

[Lesley_1 in reply to Jules13]

It's called dry mouth syndrome , I think the correct term is Skogrens disease or something.

I have had it for the past 7 or 8 years, now I have the dry itchy eyes. Fake tears help there.

I just try to brush my teeth morning and night.

The Tramadol can cause dry mouth too.

[sallygrain]

Hi I am on the triple drugs metha, hydroxy, sulpha now. The latter one just 2 weeks in and i have been pretty crap of late but all your comments have boyed me up. I had a brilliant year with the first two with minimal side effects but they suddenly stopped working and i went back to square one. I so miss the good times😐

[Jules13 in reply to sallygrain]

Oh that sucks Sally. Why does it just stop working, it's so weird.

[Cindymc]

For the dry mouth you can buy dry mouth lozenges and they really help. You can buy them at Walmart or Walgreens. My ENT dr recommended them because he said our meds definitely dry you out. I ended up getting thrush in my throat because of the dry mouth so you really need to watch out. You can also get mouthwash and spray for dry mouth. I found the lozenges to be really useful especially at work. I can keep a few in my pocket and then take one if I start feeling hoarse. I have to talk a lot at work and believe me this really helps. 😊

[Jules13 in reply to Cindymc]

I'm in England. No Walmart or Walgreens. But I can find them somewhere. The throat spray makes me gag but I chew gum and everything else which helps. X

[sallygrain]

A friend with RA told me that for some the disease simply over rides the drugs eventually in the same way that antibiotics become drug resistant. For some people it takes time for others it never happends. S

[Lesley_1]

My specialist started me on methotrexate 10 mg once a week plus Sulfasalazine 4 tablets a day.

2 months later he upped it to 20 mg a day of methotrexate and I have been on that treatment daily for almost 30 years.

These 2 DMARD ( disease modifying anti arthritis. I think I have that right) are still the gold standard of treatment with anti inflammatories added as required which I can't take.

There are many factors to consider for your doctor. What your individual blood tests indicate and what symptoms you have. If he is a nice doctor and you feel that you can ask him do so, if your symptoms aren't settling by your next appointment ask about Methotrexate.

It's all going to take time which is very hard if you're working and have kids etc.

[munchkin]

Never tried sulph, but I know the methotrex works well. I hope you get your tablets sorted and can carry on with your graphic design work