I’m on week 8 of taking methotrexate and no improvement so far. I know it can take 12 weeks so trying to be patient! My steroids are being reduced so I really hope it works soon 🤞 Just wondered if people find that methotrexate kicks in gradually or is it a sudden feeling much better thing? Also, do most people find it’s towards the end of 12 weeks that it starts to work? Or is it different for everyone?
8 weeks and waiting!: I’m on week 8 of taking... - NRAS
8 weeks and waiting!
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Pepperpot22
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It can range so differently there seems to be no rules on this on any of the drugs. For me after approx 16 weeks they decided there was no change and I needed to be put on something else. Others on here will say be on it for years.
Have chat with your rheumy team and talk it out as they will understand and work out a plan with you,
That must have been so disappointing to go 16 weeks with no improvement!
I kept getting chest infections and then had a reaction with 2 other drugs and MTX (rare) and no change so it all came to a head. BUT so many on here it has worked. It took me 5 other drugs almost 2.5yrs before I found the one that I could cope with 🤪
Ohh, that sounds horrendous!
it’s about getting back on the horse and keep
Going as you need to find the drug for you and you need to dampen the affects of RA which is how I saw it. So kept going x
😑 x
I think a big problem if it takes a long time to work, if it were me I would be wondering if the RA was improving on its own. I don't take anything and I get bad flares which come and go, and sometimes I have no symptoms at all and at others really bad ones. If I were taking a drug, I would not know whether the drug was working or not. I am very sensitive to medications and if they are going to work, I know straight away.
Can I ask if you don't take any medication through poor experience with meds, or did you decide from the outset not to take meds ? I'm now on Filgotinib and Leflunomide, but still require 12 mgs prednisilone per day. I've taken 8 previous medications, all the traditional DMARDs, several biologics and JAKs and had to stop due to side effects or the meds not working for me.
I'm not doing well just now and expect that my meds maybe changed again. I'm beginning to wonder if I just give up and stay on prednisolone, as it is the only thing that seems to help. I can't manage day to day without something.
I raised this question to a previous rheumatologist years ago and she was quite taken aback, saying there was lots more meds to try. However several years on and more failed meds, I'm thinking again what is the point of these very expensive medications that are just not having any or little desired effect?
I would be interested to hear your experience.
Its very interesting as I feel I have had so much happened and some of it I feel is drig related issues that you do wonder what IF. I am reducing on some of my meds with my GP assisting as I struggle to understand how 17drugs per day 'help me' when in fact my health has declined so much and with no sign of it abating. Plus you then read is it the side effects of the drug or your RA.
Its huge dilemma but I also get you need a drug to stop joint erosion and how some people can not take the drug for now and others need too as more advanced.
I asked the private consultant this once, why can't I just stay on prednisolone as it works, he said that technically you can but then there are other problems associated with prednisolone, this was when he introduced lefluminode alongside etoricoxib, hydroxychloroquine & methotrexate but, I stopped methotrexate last June & it was replaced with sulfasalazine which works pretty well without the awful side effects of mtx x
I've been on oral prednisolone for 5 years, varying dosages.It is so disappointing to try another med and then have to give up due to it not working / side effects. I'm back to thinking what is the point ?
I'm not defeatist just realistic.
I'm into my 7 th year of having RA and still have not found my med.
Aaw 😔 I know what you mean, lately I think I've been getting quite depressed, having had the shoulder op 3 weeks ago tomorrow & being in pain from that, plus my left shoulder which has been getting more painful than my right before the op but moreso since despite having a steroid injection in it when having the op, the carpal tunnel, trigger finger & pain from the ulnar nerve all coming back with a vengeance 🙄 I thought the splints had worked & stop wearing them since having the shoulder op, now I'm not sure if the pain in my shoulder (s) was distracting the hand pain or if they were being left alone whilst my shoulder was healing.A few times I've thought shall I stop all meds but, remember then how much worse the pain was when I've ever stopped any for whatever reason, my hubby has said a few times, why not stop them & see if your body resets itself 🤷♀️ x
There was a delay in seeing a rheumatologist/diagnosis, and the first thing said to me is that we are late with drug treatment so it might not work.
Prednisolone did not help and I was allergic to it, as I am to other steroid/hormone preparations.
A cortisone injection into my shoulder relieved pain and stiffness for ten weeks but it had side effects like awful thrush. I do have a problem with candidiasis - over 40 years.
I tried hydroxychloroquine and it helped a little bit almost straight away - I could feel the button in the lift when I pressed it - my fingers had been numb for nine months. I have a longstanding chest problem with an unclear diagnosis and had to stop the hydroxy when I was coughing up blood and my cough was worse than ever.
At the same time as all this (nine months after onset, so slightly before) I tried electro acupuncture and Chinese herbal medicine which I found marvellous. The acupuncture released my stiff fingers immediately.
I have tried Hydroxy twice since then but each time I coughed up blood and had an awful chest infection. X-rays have showed a spot on the lung sometimes. I have severe hay fever and other allergies so nothing is clear - tried two hospitals and they differed in diagnosis. The optician also found a spot on the retina which worried me.
The first trial of Hydroxy was Quinoric which caused diarrhoea, as it does for many others.
I also find exercise keeps RA under control albeit I am not always available to do it so the RA flares. All in all, I can keep it under control. It runs in my family - my mother had it but only one episode at age 31 for six months. I use electro acupuncture from time to time but it is now quite expensive. I cannot get the Chinese herbal tablets any more.
My age is also a consideration. I am now 74, diagnosed end 2014 six months after onset. If I were offered a biologic I would try it but I am not willing to risk methotrexate. According to NICE, I have to take it before I can get biologics.
Thankyou.I was diagnosed 6 and a bit years ago, but it is likely that I have had RA or whatever it is for a long time.
Unbeknown to me, until a few years ago, my GP tested me for rheumatoid factor in 1989 and again unbeknown to me I was tested for CRP twice in 10 plus years ago.
Always negative but then I have a diagnosis of seronegative RA just now.
I've been on diclofenac acid for 33 years, never could manage without it due to joint stiffness.
I kinda wonder if things are just to far gone to find a medication that will be effective. I have advanced OA in my spine too.
I'm in the same boat as you.
I would be really worried about staying on just prednisolone. Yes, it reduces the inflammation and makes you feel better, but it doesn't prevent the damage to the joints and other tissues. I'm of the generation that saw the results of untreated or just treated with steroids and the resulting damage to joints, heart, lungs, etc with the disability that went with that were horrendous.
My grandma's body was badly damaged and she was in constant pain and unable to do much apart from sit or lie in a curled position by her sixties. And about four years ago, I was at a dance in Pembrokeshire where one of the musicians could no longer play because of disability and pain - he lived in one of the communes and had declined modern medicine because of his beliefs.
Please go on searching for suitable treatment!
I just have a couple of intra muscular shots a year. I've had some shots into joints too. Nothing else has worked. I'm not continuing to take countless medicines that 1) don't work for me. 2) cause horrendous side effects. 3) often give me infections. It's not perfect, but it's what I'm stuck with. I've discussed with rheumatology and he agrees. I'm highly sensitive to drugs. Although not perfect the steroid shots have not caused any problems so far, and having them gives me a window of opportunity to go long distance walking once a year. Without them, I couldn't do it.
Not everyone's best choice, but I'm not suggesting they do it. It's what works best for me.
If I could have found something that took the pain and flare-ups away I would have taken it. Not to be I'm afraid. To be fair, I'm not as crippled with pain as many are. I'm 61 now. I think I'll just make the best of what I've got. 🙂
I'm afraid it's with all things med related where approximations are given, it depends on a number of things, your metabolism, BMI/dose, how much disease activity it's contending with & such. On average yes, it's 12 weeks, but it can take longer, if it works at all. Mostly benefits are noticed prior to 12 weeks, they did for me. You’ve another month before I'd be wondering if it was for you, but it might just kick in next week. You see, not an easy question to answer. Your Rheumy will be reviewing you pretty soon I would think so don't panic.
If tablets aren't working as well as hoped they may consider injections before moving on to another DMARD as MTX is considered the most successful. Injections often work better at a slightly reduced dose meaning a higher dose than the equivalent oral could be effective.
Interesting to hear about injections working better than tablets at a slightly reduced dose. I didn’t know about that
Like most I started on tablets (just one year) but a new Consultant at our first meet wanted to increase my dosage from 15 mg to 20 mg & switch up to injections. The dose was too high for me, the jump from 15mg to probably around 25 mg equivalent so it was reduced to 15 mg which I was ok on & responded well to. They are bioequivalent of course but the bioavailability is slightly different as injections aren't absorbed through the stomach & small intestine. This is why fewer gastrointestinal problems are also usually experienced when compared to tablets.
Hi there, dear NMH! I hope you are well. 💗 I was switched from 25mgs Mtx tablets to 15mgs sub-cut as my solo therapy for around 5 years, then it wasn’t strong enough to hold RA back. I went up to 25mgs eventually and that was fine but after around another 5 years it stopped working so well and then a biologic was added in and over 1-2 years my Mtx was reduced down to 10mgs. It worked fine with switching to sub cut. No nausea whatsoever. A lot could improve for Pepperpot in this next month. It could kick in as you say anytime now. Let’s hope so. x
Hiya J. I'm not doing too bad thanks. Funny you should say that as I can't make my mind up if MTX is working as well as it could just now as when I first started it in 2009. In the past I have tried double therapy twice, both of which I’d to stop so relied on steroids to bridge the gap. As I’m on a slow taper (0.5 mg every other month) it remains to be seen when I've gone a little further if I can manage without steroids & just MTX alone. The problem is I can't go higher than 17.5 mg without increasing/adding side effects. Time will tell I suppose. I'm hoping Pepperpot feels the benefit soon too because it's been a good DMARD for me for a long time, as it has for you & many others.
Hope you're doing ok. I see your posting problem has been resolved. It must have driven you up the wall! x
I noticed a marked difference/improvement around week 8-9 but there had been small indications around week 6. It could still work for you but feel it would be good to voice your concerns with the rheumy. Are you due to have an appointment and a blood test at week 12? That could throw some light on it. I’m crossing my fingers for you.
I have an appointment with RA nurse 10th March. It’d be luvly if it starts to work before then 🤞
I’m crossing my fingers for you. Let us know. Not long to wait for your appointment. 🙏🏻
there’s still time to work it’s very different for everyone how they react to drugs so don’t lose faith it was around 10 weeks it started to work for me and it was gradual. The fact you’re reducing your steroids and are not getting worse could suggest that the mtx is starting to work, 🤞🏻 you see improvements soon.
Pain is increasing as steroids reduce. Makes u realise how much they help! Gud to hear that urs started to work at 10 weeks. Gives me hope 😊
Keep pushing the Hope button as you need that all the time.
Your name on here always makes me smile as at school (junior) we used to play a game called down Mrs Pepperpot. Still in touch with the other 2 girls 51 years later x
I like the idea of a hope button! 😊 Mrs Pepperpot! Wot a brill name for a game! 😂
it was based on the Mrs Pepperpot books
I have been on it for almost four months. It is starting to work! Huge difference for the last two weeks.
Gud to hear! I need to be patient!
Methotrexate didn’t work for me , but after 3 biologicals the 4th one worked for me … you’ll get there x
Jackie
It is different for everyone and some people need additional medication. I would always advise speaking to your rheumatology nurse. Call today to ask their advice. I hope you get some relief soon.
Hi Pepperpot. As you can see, it is different for everyone. I am on 20mg mtx. I noticed a definite, but slight improvement about 10 weeks after the mtx was added to my sulfasalazine. The improvement continued for a while but then levelled out and I still didn't feel as good as I would have liked. My rheumy was convinced that the problem was now only OA (but I didn't agree). Anyway, after 11 months I suddenly felt absolutely brilliant. Not only did my joint pain go almost completely (and I would say that the residual pain now IS osteo - it feels different to me) but the best bit was that I suddenly had loads of energy. I had been tired for so long that I didn't even really know I was tired until I suddenly wasn't (if that makes sense). So, I have now had 12 months of feeling great. A few niggles this week, so fingers crossed it isn't the start of a new flare...
Give it a bit more time, but if you don't feel at least some improvement in a few weeks, then talk to your rheumy team. I wouldn't have stuck it out for 11 months if I hadn't believed it was working at least partially. Fingers crossed for you x
It kicked in for me after about eight weeks it's been beneficial for me so far
Hi Pepperpot22 , sorry to hear of the time it's taking for you to see benefits from the medication, I was in the same spot recently myself. I started on a combination of methotrexate and hydroxychloroquine with the steroids and it took a good 3-4 months to see definite benefits, sorry to say. But they did come. I had to stay on quite a high dose of steroids for longer than planned and had an injection as well as the tablets - so it was quite hard to know what was helping and what wasn't in those first few months - but the DMARDs did slowly start to work. If you're noticing an increase in pain when you taper the steroids down, it might be worth having a chat with your rheumatology team to see if the taper could be more gradual until you see some effect from the MTX - it mightn't suit everyone but it might be an option. Or, depending on disease activity and other factors, adding a second DMARD might be another option too. The weeks feel very long at the start of treatment don't they. Fingers crossed the MTX starts kicking in soon for you.
with me I woke up one morning and and knew I felt different can’t remember how long it took to kick in but I do remember like you just thinking i didn’t feel any different then suddenly I did. But I also wasn’t on this group to ask lol
I have been on the low dose injections for 14 weeks now. At first there was little difference, At 10 weeks I wasn't completely sure it was working but I wondered. By 12 I was pretty sure things were better. It did sort of creep up on me.
I keep a daily diary of symptoms, but I also do a score in a spreadsheet, three times a day, of how certain joints and other things are. When I started the methotrexate I added nausea and headaches.
I was able to graph what was happening and I it was only when I went back through the data that I realised that I had far less sciatic type pain from four weeks in. I wouldn't have noticed that if I hadn't visualised the data. Now I it is noticeable that there is much less pain, and the stiffness in the morning lasts much less time than it dd before, but it wasn't clear early on.
The irony is, my rheumy kept saying there was nothing wrong with my SI joints or back, because she doesn't see any inflammation on the scan!
So keep going for a little while longer, just to be sure.
Sorry to hear that.
I'm in a similar boat. Diagnosed last September and immediately given a steroid injection followed by an 8 week course of Prednisolone. This was later increased to 10 weeks as my blood tests showed that my inflammation markers were still elevated. Not too long after that I was given a second steroid injection. That tided me over until earlier this month, when the injection had completely worn off and all my symptoms came back. The Rheumatologist agreed that the current medication wasn't working and I was given a third steroid injection. This was five months after starting MTX.
I've been approved the funding for more expensive meds (TNF alpha blocker) and I should be starting those in the next week or so.
So it's really a case of waiting to see what works and when, which I've found is the worst bit. The uncertainty isn't very nice, but just keep your rheumy team updated with any changes in your condition and ask them questions on any concerns you might have.
I've found being as pro-active as possible helps, as long as you're not overly fatigued of course. I do quite a bit of walking, and I'm doing online training courses to keep my brain active.
Stay positive, best of luck 😊
Sorry, meant to say that my symptoms returned at the start of last month. Forgot that we're now in March.
Hi, I added Methotrexate and Hydroxychloroquine to my sulfasalazine in mid October after having a steroid injection to help in the mean time. I started to feel a bit better and got my crp down to 9, then since January I am slowly getting worse again. Crp now at 15 and waiting on bloods in a week. I would have hoped for improvement in this time, I cut the hydroxychloroquine out a few weeks ago due to stomach problems but just feel yuk now, nausea at times, shoulders, wrists and ankles are sore. I’m now wearing splints on my wrists and seem to be going backwards. I tried methotrexate injections about 18 months ago and felt terrible so went to the tablets this time in October and I’m now feeling the same. I’ve managed to get a nurse appointment on the 20th March. I was so hoping to feel better but now seem to be in constant pain. I think it was probably the steroid injection making me seem like I was improving and now it’s worn off I’m back to square one. 8 weeks is not long so don’t give up hope yet, it took more like 6 months before I saw any improvement on Sulfasalazine but that didn’t make me feel nauseous!
As already said we respond individually. I'd been put on high dose steroid but the nurse said as I'd only taken a couple of days it would leave my system quickly enough for the MTX to start working. I was started on tablets which worked within the 12 weeks time period. However side effects (nausea) were a problem for me so I now have the same dose via pre filled injection pen, which controls my RA fine.
No harm calling advice line to discuss your concerns.
😊
MTX worked well for me, but progress was initially very gradual. One day, I noticed that my feet were more mobile; another I realised that I could see my knuckles again, and so on. I was told that I wouldn’t see improvement for 12 weeks, but I think mine began at 8 weeks. There was certainly no sudden, dramatic improvement, though. I do hope you get relief very soon.
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