I’m wondering if anyone can help I suffer with rheumatoid arthritis I’ve tried methotrexate before which doesn’t help as it makes me sick and made me lose a lot of hair. I’m currently taking sulfasalazine, I took it before I had my youngest son at 4 tablets a day which then it worked, but I stopped while I was pregnant and then started again after my son was born, so this time round I have been back on it for nearly a year. It worked very well for me before my pregnancy but since having my son my condition is a lot worse, I have a lot of pain and swelling in my wrists and fingers sometimes shoulders. My index finger on my right hand is now damaged and I’m unable to bend or straighten and I’m worried about getting damage elsewhere. My rheumatology nurse put me on a month long course of steroid tablet at the end of last year to see if it would calm my condition down so I the sulfasalazine would step in. Which it didn’t work that way as soon as the steroids stopped I was in pain within 3 days. She is now talking about either other medication? what does everyone else take and does it work? Or the One I’m more inclined to do is up my sulfasalazine to 6 tablets a day. Has anyone done this is an noticed an improvement? Sorry for The big long drawnout message, would appreciate any help. I’m only 30 so I need to find something that would be good long-term. Thank you.
Has anyone had any benefit from upping Sulfasalazine ... - NRAS
I did take 3mg (6 tablets) for a while, which my rheumy wasn't entirely happy about as such a high dose, but agreed to try it as I'm tall. Anyway it didn't work any better than 2mg, so I ended up with the added hydroxy which worked much better. (Also on MTX throughout). My current rheumy won't prescribe more than 2mg no matter what weight the patient is.
I always feel horribly guilty as I basically haven't had any long lasting side effects from the drugs. With all of them the first couple of months were a bit rough but after that it was fine. I was on triple therapy of MTX, sulpha and hydroxy for 8+ years and I felt fine (apart from an hour or so the morning after taking MTX). And I was in remission for about 5 of those years...
I was onincreased gradually to 6tabs for over a year when first diagnosed,which I really felt worked.then I took a big flare and all the pain and inflammation came back.they then added oralmethotrexate 15mg with not much change after 6months.so now going to add hydroxy. and change methotrexate to injections.im a bit curious as to how it works.Keep thinking if the sulfasalazine has stopped working,what is the point of me still taking it,but then there the experts, I hope.btw I previously read that sulfasalazine dosage went by weight,but think this can’t be the case as I’m only 9 1/2 stone.
Do have a talk with both your rheumatology nurse & your rheumatologist, they are the only ones from your previous history,& your condition now who can know which drug is likely to help you most.
You say Mtx did not help you...but many of us have years pain free on it.
So talk & listen to your doctors who know you.
I can understand how difficult it must be for you with a little one to look after....but guess work or altering your meds without discussing it with your doctors is not the way to go....
It is always very much trial & error, but there are so many drugs available these days, I’m Sure your Rheumy will be able to prescribe something that will help you very soon.
I am in contact with my rheumatology nurse and consultant. I’m not planning on changing any of my meds by advice from other people, these are my options from them, I’m simply just wanting to know what works for others before deciding. The methotrexate didn’t work because it made me feel ill and made my hair fall out. Which in the long run makes you feel just as lousy as being in pain all the time. Thank you for your advice though much appreciated .
I’ve been on sulpha since October last year. Was on 4 per day up until jan this year; it seems to be doing the trick and in the last month I’ve upped it to 5 per day. What I can say is that the joints although not completely pain free do feel much better. Not sure if this is due to the extra tablet or due to how long I’ve been on them?
I did forget to take them for a week in Dec when I was on holiday; well largely because of the booze; which caused a flare but that is back under control.
I wanted to give the sulpha a go before moving to MTX and have to say I’m pretty pleased thus far. Although it does make me a bit fatigued at the end of the day. On that note; what do people use to fight fatigue ??
Before sulpha I struggled to exercise but now I spin most days and if I listen to my body I can go for long runs every now and then.
I’m just 40 so hoping sulfasalazine will work out in the long term!
I am speaking with my rheumatology nurse Who has given me the option to either up my sulfasalazine medication Or try other medication. Which is why I am asking advice of other and what they do. To find out what’s safest and works best for other people. I’m not in anyway considering upping my own medication. It’s concerning that some consultants don’t like upping the sulfasalazine, it must not be safe so I will mention this in my appointment.
I was on mtx and like you it made me really very ill. I started on sulfa ( nervously after the mtx experience) and it was increased over a couple of weeks until I got to 6 a day (6x500mg). My consultant showed no signs of worry in starting me on them and it wasn't until I read these comments on here did I realise it was large dose! That was about 18 months ago now and I do feel that they help.
Unfortunately I have not had the same overall ra improvement that I had on the mtx but with no side effects I'm more than happy to take them! At one point they added hydroxy but it made no difference at all. I now take etanercept (benepali) weekly with life changing and amazing results! I still take sulfa but only 3 a day now which will probably be lowered or stopped at my next med review. My bloods look great and show no inflammation. I have no side effects at all but most importantly no pain!! I just get little random swellings in my fingers or ankles every now and then that lasts a day or so.
I'm 43, 5'5, 9.5 stone (I've never heard of weight connected to sulfa before) and like you I have one finger that is damaged beyond repair. After a couple years of trying various meds, steroids and living with awful pain ( so bad I was unable to walk) I can honestly say I have found the combination that works for me. I still suffer from fatigue at times but maybe that's just having 4 kids?!
Personally I have always taken my nurses/rheumatologist advice and tried every and any medication offered. How else will you find the drug that works for you? Good luck and I hope you find the combination that works for you very soon.
Thank you so much for that, that’s definitely given me something to think about and discuss with my rheumatologist. I haven’t heard of etanercept before but will definitely be doing some research on that now. Can I ask how long you’ve been taking etanercept? I’ve been feeling quite down about it all at the moment but listening to a few of you and your good experiences is definitely picking me up and making me feel like there light at the end of the tunnel, so thank you all. Jamarruk I only took methotrexate for 3-4 months.
I've been on etanercept 7 months it's a biologic drug, immune suppressant that I inject at home.
If someone had of told me a year ago I would be pain free I would of never, ever of believed them. I've even been out clubbing at my old age hahaha! I had to stop googling drugs for my own sanity, no one writes good reviews when they are feeling great and the drugs are working well.
What works for one person doesn't for another. It's all trial and error im sure you will get there soon.
I was on 6 tablets some time ago. I found 6 affected my mood, causing me to feel depressed, rather than physical side effects. The depression alleviated when they were reduced to 4 tablets a day. If you do decide to up them to 6 per day please be aware of this possible side effect. I wasn't and suffered unnecessarily for quite some time.
I was on 3 Sulphasalazine tablets for about 2 years with good results, but had some swelling and pain in my hands.
Last month I was given a steroid injection and told to increase to 5 tablets a day, feeling good again for now, but could be the steroids rather than increase in tablets, only time will tell.
Wishing you well