Hi I’m new to this forum and looking for maybe some advice .
I was diagnosed with RA about 12 months ago , so had my knees drained twice and had the steroid injections which worked but only lasted three weeks , so then they put me on salazopyrin for about 8 months and now been on metetraxate for 7 weeks but I’m really struggling I can hardly walk and have had enough every morning I can’t get out of bed it’s a nightmare.
I never realised how bad ra is and most people don’t . Anyway I’m just wondering that how long should I see results on the metrexate I have read the information online but I wanted to ask real people .
Thanks
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Buckybri
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Welcome to the club that nobody wants to join. The length of time it takes varies, but it can take as long as 12 weeks. Even then, some people don't get on with Mtx but are changed to a different drug. Would you mind telling us what dose of Mtx you take? It might be that you need an increased dose.
Hi, methotrexate took about 16 weeks for me but I came off it after 20 weeks due to side effects unfortunately. Maybe you could ring your rheumy helpline?
Hi, methotrexate took 14 weeks to work for me (15mg). After 23 weeks the dose was increased to 17.5mg and I'm still on that. You might need to ask for an increase in dose but I'm afraid it does take a while. Good luck and hope you feel better soon.
Hiya Buckybri, welcome. I'm sorry you're struggling at the mo. You'll probably be aware that MTX in common with other DMARDs can take around 12 weeks to be fully effective, longer in some. With that you'd need to see if the dose your Rheumy has started you on is high enough to help bring you under control, so that could add a few more weeks if that is the case. As with most things RD there's quite a lot of wait & seeing needs to done! It's not an exact science & that also applies to the efficacy of the meds we need, if they work well for us or not.
I tried sulfasalazine a few years ago but it didn’t help an awful lot & I had quite bad nausea not helped particularly with antiemetics so I had to stop it. It was double therapy with MTX which I've been on 10 years, at various doses as disease activity dictated.
I hope your MTX is building up in your system about to be noticed, releasing you from your bed at least. Fingers crossed it's as good a DMARD for you as it has been for me & you're just being a bit previous.🤞🏼
Hi and welcome.
You’ve come to the right place. The people on here are brilliant. Not only are they lovely but their knowledge and understanding is second to none. I’m on methotrexate it took about 12 weeks to work for me. I’ve been on it for 3 years absolutely fine but since Christmas I’ve been very unstable and just started methotrexate injections as absorption is better too early to tell if they work yet.
Max dose is 25mgs very often they add another drug maybe hydroxychloroquine or sulpalazine( not sure of spelling) it’s very common to be on a cocktail of drugs but it’s early days yet.
I know what you mean.... I too am struggling but listening to people on here for some it’s a very long journey with lots of trial and error with drugs ( we maybe one of those)but they get there eventually .🤞🤞🤞
If there's anything RD teaches us it's how to be patient. I'm not being flippant, just that we, as in us, can't dictate what will work or when. It really can be difficult waiting I do appreciate that but we're really at the behest of our meds, our Rheumy too, we trust them to know which will work best for us but even so there are no guarantees. Just try think positively, do all you can to help yourself... eat well, don't smoke (or try your best to stop if you do) exercise as you are able, if you are able, take your meds as prescribed & you'll give yourself the best chance of knocking your RD into remission, it's down to the meds then. But know that sometimes it takes a few tries of different ones, I’ve tried 4, 3 have failed so I remain on just MTX & had to take a reduction from 20mg down to 17.5mg so could be better controlled, but I’ve been diagnosed 11 years.
The only other thing I can offer up just now is if tablets don't help with MTX you have the option of changing to injections which can work better in some instances. Fingers crossed given a few more weeks you'll feel the benefit though. 🤞🏼😊
Thank you . I do struggle the day after mtx feel sick and feel horrible and depressed I take the anti sickness drug but it’s hard to take it in time to stop the sickness feeling . Would the injection stop this feeling of is it something I just have to deal with ?
It’s mad one day u can be fit and healthy then it just comes crashing down . Thank you .
Nausea is one of the more common side effects unfortunately. MTX was designed as a med to treat cancer but around 40 years after was found to help inflammatory conditions so in effect even though we take much lower doses & a lot less often it's still a possibility we can have nausea, just to a lesser degree. Is it folic acid you mean when you say anti sickness drug? If so it depends on when you take your MTX but if you take it before bed then I would think if you take your folic acid with breakfast that may help. If like me you take it in the morning you could probably take it with your evening meal, I take mine the following morning but I also take an antiemetic to help with nausea, one reason my dose is being reduced. How often were you told to take your folic acid? If it's less than 6 days (every day except MTX day) then you could ask if you could increase the days you take it, I don't think that's an unacceptable request given your Rheumy has initiated quite a high dose. He must want to be knocking your RD on the head, maybe he thinks you should be better controlled by now on sulfasalazine as monotherapy. If you are on max dose you could ask your GP if he could prescribe an antiemetic. I take mine when I get up & inject once I've showered. Oh, the reason we don't take it folic acid on the same day is it's thought it can reduce the effectiveness of MTX.
Injecting can reduce the severity of or even eliminate side effects due to the MTX going straight into the bloodstream, it doesn't go through the gut. It's also a possibility that the optimum dose controlling you in tablet form could be reduced because of it being a more direct way of administration less of the med is lost. It could only be 2.5mg but it could make the difference between staying on it or having to come off it, especially if it's otherwise working well for you. As you've only been taking it 10 weeks though your Rheumy will probably want to see how you get on with tablets longer term first because the more common side effects can become tolerable or even go over time. I know it's horrible living with nausea but cross your fingers you're not experiencing the other ones listed as well.
If all else fails you do have at least two other commonly used DMARDs your Rheumy can prescribe, then there are anti-TNF's, Biologics & JAK inhibitors so don't worry. The unfortunate thing is we need to try to see what works best for us with traditional DMARDs first, that can mean waiting for them to work, there's not one drug for all, would that there was! Maybe in time but just not for us yet.
Gone on a bit but reading between the lines you weren’t given the full SP on MTX... I think that's most everything though but if you have any other questions just ask. Meantime maybe having a read through this will help nras.org.uk/getting-establi... 🙂
Thank you . I take folic acid about 24 hrs after the mtx and I also have a anti sickness med that I take every four hours the day after mtx . When I went to see the specialist and she went through mtx I was kind of knocked back and my mind wasn’t really taking all the info in because there was so much info about it all . Also I can’t find a painkiller to help I’m now taking oral morph but that does not seem to help either . It’s mad from what I thought was just maybe a tendon problem or something along those lines ends up being this . It just looks like it’s like everyone on here writes is going to be a long road to travel down but hopefully I will and everyone else will get there to .
Just the one folic acid a week? I'd let your Rheumy Nurse know you have nausea in spite of also taking an antiemetic. I would hope she'd be empathetic & increase the days you take the folic acid.
It's understandable you didn’t take much in, it's a huge learning curve & when new meds are discussed we're often though necessarily overloaded with info. Maybe do as I do & have someone accompany you to appointments, two heads help (even if they're sheeps!) when recalling what's been discussed. Do you have someone close who would be willing to?
Have you gone through the normal pain relievers, co-codamol, pregabalin, gabapentin, amitriptyline & similar meds? Are you prescribed an NSAID? There are plenty in this group to try if not or if you have one & it's not helping. Maybe if you could ask your GP to draw up options to relieve your particular pain issues. It could well be that once you're better controlled you can stop it. General steroid injections are often helpful, though they are limited to 3 or 4 per year usually. Sometimes a short course of corticosteroids can help you through a particularly bad period, flares can be so & so's but they can often be eased. Talk through your options, you should be made to feel comfortable at least & coprescribing different meds is quite usual in RD. It is relatively early days for you though & MTX could need a few more weeks to build up to be effective.
I went to my GP foot pain, only had it a month & only went to prove my h wrong, he said it was gout! So I was a bit surprised when the blood tests came back as positive. I have other joint involvement now bit I’m sure I could have been a lot worse had I left it longer or my GP didn’t recognise my symptoms refer me to the Diagnostic Clinic, that I was diagnosed & treated promptly. That said many more than those who find or have found help from this site are doing well on their meds, they're not here because they've no need to be so please don't think that it's all doom & gloom though it's easy to think that way from what is discussed here. There are around 400,000 in the UK diagnosed with RD, we have over 26,000 members but not all are active on the site, only a small minority stick around, many more are just getting on with their life, remission is possible even if it is usually med induced. Treatments nowadays have become so much better in our lifetime when I think that my Nan 'managed' on ibuprofen (Brufen) & paracetamol plus some horrible smelling ointment. 😕
I have had two lots of steroids and haveing a third next week , they work but only for about three weeks but I need a break from the pain again now . I have had tramodol along with other pain killers and I’m on 20 mgs of amitriptyline every night but can’t really see what they do to help now on morphine but again does not seem to help . It’s all new to me and I’m struggling I feel like I’m a nuisance at the docs because I keep going back asking for pain relief .
There are options. For example dosing of amitriptyline, I take it twice a day, 25mg with my morning meds & 50mg in the evening. Has increasing your dose to be more effective been suggested? Maybe changing your tramadol for an alternate analgesic, it could mean you can change both opioids for one that works better. If you have a pain relief review, I had them regularly when we were trying to control mine, then something other than the ones which it would seem could work better may be replaced for something more suited to you. You could never be a nuisance needing regular visits to your GP if you're still in pain on two opioids, he just hasn't found the right mix for you yet. It can take time which means seeing him more regularly. I'm sure he'd rather you saw him regularly for a few months over you being in pain because you think you're being a pain! Your amitriptyline for example, has it been suggested it could be changed to or a dose added in the mornings. An NSAID taken in the evening is more effective in freeing up your joints for the morning, when joints are most stiff.
Have you tried splitting your MTX dose through the day? When I first started tablets my Consultant recommended taking them with meals so it took 15mg as 2 tablets with breakfast, lunch & my evening meal. It's less for your body to cope with & more med is retained that way too. You'd have to choose how you'd divide your 20mg dose so it works best for you.
It is all new to you, you need more help when first diagnosed. Please don't feel guilty about that. 🥺
I am reading all the answers to Buckybri and my God, members are so informed and
knowledgeable, they can be doctors. I am really impressed by all the answers each one brings, it's like "clinical expertise", especially you, nomoreheels, hat's off!!
As far as I am concerned, I decided a year ago ( I have RA for more than 2 years now) that I will not take any medicine because of the side effects. I watch what I eat, I stretch every morning for one hour because I get up very stiff, then I am able to start my day and thank God, I am managing, with a little pain I can deal with and hope I am doing the right thing. When I read what everyone is going thru, I am happy with my decision to don't take any medicine. In the begining, when I was diagnosed with RA, I was in such pain, I thought that I will be in a wheelchair because I could not function at all, then I read a lot to be informed about the disease and I decided to not take any drug. My rheumy was not against it and for a year or more now, I don't see any rheumy, I don't need to. I, however I take 50 mg anti-inflammatory drug, almost everyday (Diclofenac). I live in the US but I like to visit this site now and then. Just talking here about how I deal with my RA if it's OK with you members.
I know I’m glad I joined this forum I’m getting more info here than from my doc , I’m not bothered about taking meds as long as they help me , if I was retired it might be different but I still have years of work ahead of me to provide for my family and that worries me more than anything, in my job I do a lot of walking maybe 17 miles a day and have done for 19 years and I can’t see myself doing anything else I like it and also the people I work with are good people . So to be diagnosed with RA is really scary I just hope things turn out ok . The people on here are really nice people and very helpful.
Thank you for your kind comment Hannah. Most of it has been learnt from 11 years of having RD, though being here has also educated me of the idiosyncrasies of it too, the meds as well! We each have our choices to make & no meds excepting an NSAID is yours. Are you able to have access access to a Rheumy reasonably promptly should you notice a return to your symptoms at diagnosis though? I'm sure you're well informed should things take a turn, which I hope doesn’t happen. Keep on keeping on, it's working! We do find we have more members from the US choosing to control their RD med-free, I don't know if the medical system & prescribing/insurance costs if not covered my employers has a part to play. Being free at the point of delivery the NHS works differently of course, long may it stay that way though I do fear for the future.
We're very happy to welcome members from outside the UK, it's informative for us too, seeing how the rest of the world & his wife copes with RD!
Hello there !! Did not have a chance to get back to you on Friday, so, here I am, if you don't mind, to pursue this conversation with you. First, I noticed that you use RD instead of RA, is there any reason for that. I presume that it stands for Rheumatoid Disease. To answer your concern about me being well informed should things take a
turn, to be honest, the answer is no. I just hope that things will take a good turn and of course the way you see things is much wiser. Many times, I ask myself if I am doing the right thing then I realize that I don't have the energy to fear for the future. Taking the meds with all the wait to see if it works and all the consequences of the side effects is not better for me. What I am doing now is working more or less and I will add that when I don't take the anti inflammatory pill, I have much more pain than when I take it. But at the end of the day, after all the chores I have to do are done and I go to bed, all is fine, thank God I will add, which did not happen in the beginning of my disease.I use to follow the Paddisson Program, now I follow my own program which is really a program for RA sufferers and if I need a Rheumy, yes I can find one and my insurance pays for the doctor and the prescriptions, even the very expensive one xeljanz that did not work for me.
What a relief to don't deal with all these doctors, all the trips, the looong wait, the 5 minute visit after waiting for 2 hours plus the trip, and all these prescriptions. I prefer to deal with the challenge to eat right (and hope for the best??) rather. It has been so much peaceful for a while now. I hope that nothing will hit me like a ton of bricks later like I tell my male friends who like to sleep around.
I wish you always the best. Thanks for writing. Hannah44
I also found eating helped the nausea, particularly carbohydrate type foods. As soon as my tummy got empty the nausea returned. Make sure you drink plenty water too 2 - 3 litres per day.
But to be honest if the nausea does not settle soon , then you might want to consider ringing your helpline for advice.
Yes, the crashing down is perhaps the worst of it. For most, RA creeps in slowly, but for some, it is overnight: go to bed fine, wake up immobilized & in pain. Sorry that happened to you. I still can’t believe what happened to me: fine one day, RA “train wreck” the next (RF 1500).
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I have MTX but currently only 7.5 mg. I take it for Rheumatoid Vasculitis. I also take Leflunomide. I have an appointment Next month and will ask rheumy for a drug review. When I had 25mg injections of MTX as well as Leflunomide 20mg, I was much better than I am now.
Welcome into our strange boat of RA pain etc, along with a bit of fun at ourselves now and then!
I notice you take MTX and Sulphasalazine.
The latter made me very sick then I had a bad reaction to it. MTX or any DMARD takes approx 12 weeks for you to feel any benefit. For me, it was at least four months.
Meantime, do you have pain relief eg corticosteroids, or painkiller like Tramadol?
I hope your Rheumatology Dept has given you an advice line number. Ours here is excellent. You leave a message and your Rheumatology team (usually a specialist nurse with access to your case notes) calls back.
I had tramadol but didn’t seem to work and now I’m on oral morph which don’t seem to do a lot either , mtx makes me feel like crap the day after but if it works in the end I can cope with it . People don’t realise how bad this condition is people joke with me at work about my knees which at first I laughed with them but after a year of really struggling to walk it’s no longer funny . I work in a despatch for m@s so walk a lot and I’m back next Wednesday because my sick money runs out I’m dreading it , I have a meeting with HR on Wednesday hoping they will help me , but like I said everyone I meet will say that they have arthritis but there r many kinds and RA is nasty . Before I had it I just thought it was bones against each other causing pain , not in a million years did I think it was about yr immune system .
You’re right, nobody knows the reality. There are legal implications for employers when a person has disabilities, meaning they have to make adjustments and accommodate your disability. Worth looking into
As charisma has already said about Employers and reasonable adjustments, if you go onto the nras site you can get a really helpful publication called "Employer's Guide to Supporting an Employee with Rheumatoid arthritis, I took this booklet into HR, it explains quite a lot.. Some people don't always feel comfortable explaining about this at times debilitating condition..
Just phoned the helpline and how helpful were they , brilliant , upping my folic acid to everyday except the day a take mtx and told me that my inflammation markers had come down substantially but still high and if I’m still struggling in three weeks then give them a ring to talk about other meds .
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Anyone have RA as well as a myalgia?
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