hi!since I got on this group chat all I’ve done is ask questions!!😂but it’s questions I don’t know and feel a lot of people on hear who have RA have tried metratrexate and know a lot about it and the different drugs that can be also tried.
So I’m currently taking 15 ml of metratrexate (injection)my question is do you get more side affects the more you up the dosage?as I’m fine with 15ml very limited side effects but still have pain and stiffness!!!
My second question is even if your RA is under control do you still wake up stiff or would that be gone??
I’m also on sulfazalizine 4 tablets a day but I have stopped them because I was feeling off!!such as a bit sickly loss of appetite tired pale and my skin colour didn’t look as it used to so I’ve stopped it for around a week now and feel like the horrible symptoms have faded!!but I feel like my joints seem sore so maybe it did work a little on my joints but gave me side affect🤔
Any thoughts would be appreciated 👍
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Did you stop with agreement with Rheumatology as normally the meds work each other. 15mg Methotrexate is not high dose. I am on two meds including 15mg Methotrexate and hydroxychloroquine my bloods are pretty good at the moment. I can't really answer on stiffness and pain on what's normal its depends on how long you have been on your meds and what you were like before. I was in a lot more pain and stiffness before meds. Yes I have some side effects but currently manageable.
So around 6 wks ago when I saw my rheumatologist I told him I didn’t think the sulfazalizine was working..so he said you can stop them if you want to and I will increase the metratrexate to 15,so I stopped them around a week later my joins was really hurting so because I go to hospital every week for my injection I told them I had started back on the sulfazaline and the specialist Nurse said that was fine.
But then like i said I I wanted to see which med was making me feel rubbish as I first thought it was the metratrexate but i think it’s the sulfazalizine🤔but now I feel stiff and inflamed in some joints 😞I was ment to see my consultant around a week ago but the appointment got cancelled and I’m now waiting for a new appointment.
I’ve tryed Hydroxyquine and now sulfazalizine so I don’t know what’s next.
My CRP was 30 then 26 and 12 was my last blood ready.
it’s ok to ask questions. We all started where you are!
And yes the higher the dose the more you might get side effects. But it’s so variable and also if you increase slowly your body can find it easier to get used to the drugs so no side effects,
I was so desperate to control this disease that I was determine to stick it out. Sulphasalazine took 3 horrible months to get use to it. So everyone has to decide for themselves how they balance benefits and side effects. Just remember all these drugs are SLOW! So it often takes 12 weeks before they start to work.
I have been on methotrexate for over 10 years. I’m also on 15mg a week, but I was on 20mg for a few years until it started to affect my liver. My bloods are fine now. I’m also on hydroxychloroquine but I’m still stiff in the morning. I find the best thing for me is to take my medication about an hour before I get out of bed.
It sounds like the sulpha was helping.You've covered a lot of things so I'm going to reply in bullet points.
Usually using two drugs gives your more benefit and fewer side effects.
If your dusease is under control you shouldn't feel stiff every morning but you may still have flares.
You need to decide what treatment option to try and stick with it for minimum three months. Chopping and changing makes it difficult to see what is helping.
At this stage I'd be inclined to go back on the sulpha and see until you get your next appointment.
Remember being stiff and sore all the time is rubbish so a few mild side effects might have to be put up with.
Having said all that if the side effects are impacting your quality of life that drug just isn't for you.
Interested in why you get injections at hospital. I do mine at home and it takes seconds and is very easy.
morning!thanks for replying! When I first started metratrexate injections they said I need to have them done at the hospital so they could monitor my bloods and that I would continue for around 6 weeks to have them do there then they would show me how to do them and I could continue myself at home.my CRP after so many weeks wasn’t coming down so my consultant upped the metratrexate to 15 ml.so because it’s been upped they said they needed to start again with the blood monitoring!!so apparently now my training of how to do them starts a week on Wednesday 😟
Going back to morning stiffness I have that every day since being diagnosed in 2021 and my CPR is always high apart from last week it had dropped from 26 to 12.
Since I had stopped the sulfazalizine I do feel sore and it is rubbish i totally agree but I feel less tired I look better in my face as i always looked pale I had headaches I really didn’t feel right and then when I had my weekly dose of metratrexate a long side that I felt even worse.
I have been on sulfazalizine for well over 6 months.
It sounds like you gave the SSZ a fair go. MTX can be increased higher than 15mg (if that's right for you). I noticed a benefit when I increased from 20 to 25mg. There are a couple of other conventional DMARDs that your medical team might consider adding, hydroxychloroquine and and leflunomide, if they're suitable for you. I've been on 'triple therapy' (MTX, SSZ and HCQ) and that combination is definitely better for me than two. After trying at least two conventional DMARDs and finding they're not controlling your RA symptoms sufficiently and/or give you side effects that impact your life too much, biologics may also be considered. There are lots of possibilities for escalating treatment so things can definitely improve to the point that joint soreness and stiffness are not a constant for you every day. I really hope you find a combination that works for you.
Thank you for replying I appreciate it!yeah I have given sulfazalizine a really good go..and to be honest I think I was ok with it until the metratrexate came in to to mix!I have iron deficiency anemia and very low ferritin levels and I think the sulfazalizine made it worse as I felt more tired really pale just not well at all!! Since I have stopped the sulfazalizine I feel more myself if that makes sense.I’m wondering if sulfazalizine can cause these horrible feelings when you have anemia ?
I also forgot to mention I was on the tablet for metratrexate but couldn’t tolerate it so I’m now on the injections which work for me🤞I’m on 15 ml but I think it could do to be upped!!
As for biologics I don’t know a great deal about them..and get a little bit concerned around the safety of these drugs!to be fair i think I’m scared of them 😱
Sounds like it's definitely worth asking your rheumatology team about an increase in the methotrexate dose then, as that might do the trick. Where I am the max dose is 25mg weekly. Just out of interest, are you prescribed folic acid alongside the MTX, and if so how much? That can help to reduce side effects if you have them like tiredness, fatigue, nausea etc too.
Hi yeah I take folic acid every day except for metratrexate day i think they are 5 ml!also may I add my eye lashes were very sparse but after starting the folic acid they have improved massively 👌
It's a very long road. I wouldn't try the sulpha again. Hopefully the increased Mtx will be enough all these things take so long. There are other meds but I'm on mtx 25mg injection as well as biologic and pred, although I'm not rheumatoid positive. At the minute I'm not stiff in the morning but that's the steroids. I think the aim is to not be stiff in the mornings. I do remember in the beginning the every two week bloods, not sure what the old crp reading is currently although it was 190 in December and my normal was always 20-30 so don't get too focused on blood results it's more how you feel.
Hopefully it won't be too long before you see the consultant.
There are many things to try My. I've had MTX tablets and injections. Hydroxy, leflunomide and now on sulfasalazine 6 tabs a day. I have massive problems with a lot of meds but have been on sulfasalazine since mid march last year. Took me a while to get used to it but after a few months it helps. But it doesn't control my RA enough so I'm now on biologics, benapali injection. Don't loose heart, I know I did. I stopped and started sulfasalazine a couple of times to see if it was that causing me to feel yuk. But the more I tried it I got used to it and am ok on it now. The other DMARDS made me so ill but everyone is different.
Keep a daily diary of how you feel. It's useful at appointments.
I know I thought far too much that each med would disagree with me. And most did 🙄. But we got there in the end. I still have flares, having one now, but I think the cold has a lot to do with that plus my son is getting married next week and going somewhere where there will be lots of people is stressing me a lot. I'm still very wary of crowds of people since COVID began.
Like others have said re questions, ask away! Ive spent 2 years or so asking on here and everyone has been wonderful! I wouldn't have got through this journey without them. Xx
I’m 48 too and was diagnosed with RA 5 years ago. I started on MTX and it did not work for me, caused nausea and no change in condition so they started upping the dose and adding in other drugs but to no avail. You have to find something that works for you and if after trying the drugs they don’t work have a forceful conversation. My current consultant tells me that I have to be pushy to get them react!! The next stage is biologics which may be more beneficial for you.
Not sure of your thinking here MB but there’s no correlation between being seropositive (or seronegative) and being prescribed biologics. Have you checked out the NRAS website? Plenty of really helpful information/booklets about RA, medications..including biologics plus a great helpline if you need to chat to someone. Sorry you’re feeling rubbish….hopefully you’ll soon be on the road to feeling more like your usual self and correctly medicated to achieve this! Best wishes.
Methotrexate was upped from 20mg to 25mg. This helped for about 12months with inflammation. Only additional side effects I noticed was the increase in nodules on my hands.I commenced sulphasalazine 2 weeks ago, up to 3 a day at present, aiming at 4 a day. Worst side effects have been diarrhea, nausea and lack of appetite. I've contacted the nurse whose suggested not increasing the dosage, if that doesn't help then cease taking them. I'm willing to keep trying at present in the hope it will settle down soon!
yes I am, I was super scared of biologics too and cried when the nurse came to the house. I’ve been on Imraldi, it’s helped with fatigue but not swelling and stiffness so am now looking at other options. I’m exploring gut health and TCM and doing tai chi and hydrotherapy to help
Hi!!yeah I feel the same 😱although I have heard good things about them!I just don’t know if people are more susceptible to infection on those than metratrexate even though metratrexate suppresses it also!!
Can I ask with us being the same age did you notice a change in your periods? Since being diagnosed with RA or the meds themselves affecting your cycle??
Biologics suppress your immune system much more than methotrexate, methotrexate just brings your immune system back to that it should be, so I’ve been told. Having said that I’ve had no infections/illness since being on biologics apart from Covid.
My periods felt heavier and more painful but I also had fibroids that had to be removed last year. Cycle was normal though. Sporadic over last few months but that could be perimenopause
Aww really!I used to be clock work every 28 days up until last August I haven’t had a period since!I was having night sweats and I didn’t know if it was RA as I was extremely hot during the day also!I think it’s the menopause 😞
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Good luck and kind regards.
I have been taking 17.5mg methotrexate in tablet form for over a decade, i do get some side effects feeling slightly sick sometimes, but other than that I am fine.
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Hydroxychloroquine
So long since I had a really bad flare but does anyone else feel off balance and lightheaded through exhaustion?
