Ok I got diagnosed with RA in December.. was given MTX injections to start and steroids to ease the pain.
I was a little worried about taking the injections as I’ve read so many bad things of people being poorly for days & days..
I have a daughter a dog & a job to do.
I decided not to take the injections and try herbal remedies instead.. not much helped . The steroids helped but have made me put on a stone & now I’ve even more depressed.. and in so much pain .. my neck, wrists , knees…
When you take the injections sows it stop the pain quickly or is it a long process?
Please help
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Nancy2010
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MTX will take up to three months to really start to work darling.. SOme people feel the benefit earlier than that, but take it and see as when i was on it i had no side effectsxxxx
Your pain will settle when the medication gets on top of your inflammation. It took some time for me as most people would agree. I still have some flare up pain but nothing to the intensity of in the beginning of treatment. I wish uou well.
What a shame you couldn’t find the courage to take them in December, as most likely you’d have been fine by now. I know it’s hard to come to terms with having this disease, and easy to get scared by a lot of rubbish on the internet. But really the majority of people do just fine on MTX. I’ve been taking it 11 years and it has given me my life back. I could do nothing by the time I started on them, and now I am 95% normal.
I can take 3 months for them to work, but some people are lucky and they start having an effect quickly. I would be tempted to contact your rheumy team and explain that you were too scared to take the MTX in December, and the steroid had now worn off. But you are now going to start the MTX so ask if they could give you another steroid jab to tide you over.
Yes I wish I had taken them then too! I’m going to the dr today to see if I can get some more steroids & if he will inject me with my first dose of mtx to show me how to do it.. plus will get another appointment with the rheumatologist in 4 weeks once all 4 injections are done.
Very individual. They are slightly different steroids and I don’t like the tablets as they make me too emotional and anxious. But injections are fine. Other people find the opposite!
I was really interested to read your post I’ve been on sulpha and hydroxi for many years early on I was given mxt both tablets and then injection but didn’t get on with either. 20 years of putting off injections now I’ve started injecting adalimumab and even though it’s seems to be working very well when it is time to inject I get really anxious and emotional I can’t understand why. It’s not particularly painful takes no time at all and at the moment I don’t seem to be getting any bad side effects. Your post made me feel less stupid 🙏
I was offered an injection the first time I saw the rheumy - I’m a real injection phobe so I asked for tablets. I got three months worth and was on a plan to taper off - right from the very first pill I took. The idea was that as I reduced the steroids the hydroxychloroquine kicked in and that worked. It can all be very daunting, hopefully your doctor and your rheumy clinics will get you sorted out, I’m sure you won’t be the first or last person who has done what you’ve done because they were scared. Good luck with it all.
I actually prefer the steroid injections, only because I get indigestion with the tablets and it tapers off naturally without having to think about it yourself.
I’ve been on the oral form of MTHX now for 4 years, I’ve had a few issues, but it’s worked for my RA - I still have problems with my hip, but I think that might be osteoarthritis.
I hope you get it sorted very soon, in a few months or so you could hopefully be pain free if everything goes to plan.
I haven’t ever been offered the Mthx injections, mainly I think because the tablets work for me without any side effects (apart from my liver tests going up and down, but that would still happen with the injections). I think if you experience nausea with the tablets, this tends to be less with the injections - a friend of mine had to swap for that very reason.
But I’ve never had any nausea, so I can stick to the tablets for the time being.
Maybe if you don’t feel comfortable giving yourself an injection, ask your Consultant about the tablets first?
I found the tablets affected my digestion system terribly so had to use injections. It was scarey to start but honestly is very simple . Once you have done it you will wonder why you were do worried. Definitely ask for help if you need it. I stated during lockdown so was sent a video link film to watch. You night need some help with pain while you wait for the MTX to kick in
I was exact the sane as you Nancy. I had MTX tablets for 2 weeks and my tummy acid was dreadful, I have GERD. They put me on Nordimet injections instead. Much better. I hate injections but with these you can’t see a needle, I don’t even feel it go into my skin. About 30 seconds after the injection I get a stinging sensation for a few seconds then it’s gone. Believe me in the worst when it comes to injections but I’ve been having them weekly since around January now and would not want tablets instead. They gave me a fast acting steroid injection when I started the MTX injections to help until the MTX kicked in. If you are not confident in doing the jab just tell your nurse and they will teach you. It’s easy. Use if after a good meal and drink loads of water before it and the days after it. I make sure I drink 2 litres a day now. Xx
Oh dear Nancy…..Methotrexate is not a painkiller…it is a drug called a DMARD…Disease Modifying Anti Rheumatic Drug……it can easily take 6 months to work, & during that time it will be protecting you against the damage that RA can cause……easing the inflammation ….that is causing your pain.As you are so reluctant to take it….if you have rheumatology nurses in France….why don’t you speak to yours… who will explain it all to you in more detail?
If at all possible, taking more & more Prednisolone is really to be avoided …..& I’m afraid herbs & so called “special diets” do not help RA….although eating a normal healthy diet & not smoking is a good start !
Also remember that not every drug suits everybody so you may need a change of drugs but do take your Mtx first …..because it may be your magic bullet.
I do hope you can get started on a Dmard very soon.
Hi Nancy, I was only diagnosed a couple of months before you so am still pretty new to it all as well. Completely understand how daunting it feels to contemplate starting these powerful medications and felt the same myself. Like you I was prescribed methotrexate and steroids, and also hydroxychloroquine (another anti-rheumatic).
I'm now about 6 months down the line, and that combination has improved my RA symptoms a lot although there's still a way to go. The methotrexate and hydroxychloroquine probably started having a noticeable effect around the 2-3 month mark. It's often a case of the sooner you can get started with anti-rheumatics the better, because that gives the best chance of avoiding long-term joint damage. The side effects I've had from methotrexate so far have been manageable and there are things you can do to keep them to a minimum (like being prescribed folic acid by rheumatology, drinking plenty of water before ad after your weekly dose).
A lot of people seem to prefer the injections to the tablets because there can be fewer side effects with them, especially gastric side effects. I like the injections better too so far. Before I started them I watched a few videos on youtube of people talking about / doing their methotrexate injections and it looked (and is) so quick and easy that it set my mind at ease. Here's a link to some examples if you think that could be helpful to you in any way (I just searched for 'methotrexate injection' and loads came up): youtube.com/results?search_...
Wishing you all the very best with it. It's hard at the start when it's all so new, but with the right treatment things will get better.
Thankyou so much for your reply , this is so helpful and more reassuring.. I’m going to get on and start my injections.. hopefully will be pain free soon! X
It's hard at the beginning we all spend time hoping there is something out there better but bottom line the RA consultants are there to help and maybe it takes time to find the one that works. It took me 3 years due to reactions but I did not stop I kept going as I knew I needed an RA drug to stop the progress of RA somehow. This site has many who have kids dogs and jobs and will know how daunting it is. For me pred worked as a steroid in the early days to keep me moving I take pill version.
AND pace pace pace- we all try to but rest and low stress is the key. I know, I know, its almost laughable, how to do these 2 things but do try it does help allegedly!
And come on here and rant or laugh if having one of those days as we all get it!
Neither tablets or injections work immediately. I have had periods of both and neither of them has made me ill. I have never felt sick or any different after them. Unfortunately, we need the drugs. There is nothing else that helps. Take the plunge. Your RD will only get worse if you don't. Sending love and best wishes. I hope mxt works as well for you as it has for me.
I agree. Take the methotrexate. It is scary, I know, but just do it. Once you are on it and you are feeling lots better you won't be as afraid anymore. If you feel terrible then you will have to try taking something else. You will likely know if you are going to be ok on it quite quickly. I know that all of this is like a nightmare and it is terrible to have to take these medications. I feel the trepidation, too, and never like taking something new. Not at all. Oh, and the methotrexate could start working very quickly. It doesn't have to take a long time to get some benefit.
Nancy, I found Methotrexate started to really kick in at the six week point. Reading about potential side effects can be very scary, but my GP has a mug with 'please don't confuse what I tell you with what you read on the internet'! I often have to bear that in mind when looking things up. I take Co-codamol, which really helps me. I do agree that your consultant might agree to give you another steroid injection if he open up and explain why you didn't start your treatment earlier. It's worth a try to tide you through. Take care, and good luck.
Such a shame that you didn’t have the courage to start. I’m on 25mg of the tablets, I’ve never had any side effects and been on them 5yr now. As others have mentioned they are not a painkiller, but reduce the inflammation and slow down the progression of RA. I felt a difference after a couple of months, and hate now if I have to miss a dose, like when I’m on antibiotics. The pain quickly returns. I take it for peripheral symptoms of AS, and also use a biologic which I inject weekly. You do need to continue with painkillers de add pure being on these meds, especially if you already have damage from the inflammation. You will find many on forums like this who don’t get on with MTX, but there are many who don’t bother with forums because the meds have given them a quality of life back. You can also stop it without tapering if it doesn’t agree with you 🤗
Hello Nancy, I would strongly advise you to talk to your rheumatology team and also look at the NRAS website where you'll find a lot of answers to your questions. Ring their help line maybe. They are very knowledgeable and kind. I would never stop any RA medication without consent.
MTX has been a blessing for me and many thousands. More than you'll find bad experiences on the net. The good ones don't get reported very often. I hope you find a solution.
Hi, If I were you, I would try the tablets first not the injections. You have more control over the tablets and can stop them if you have side effects. I am allergic to almost everything and had a steroid injection (for endometriosis) and a huge swelling which was the size of a balloon appeared where the thigh joins the body which is where I was getting severe pain. The problem with injections is that they are irreversible and if they do not suit you, you have to wait three months for them to wear off. I also had a reaction to a cortisone steroid injection in my shoulder for RA - though it worked instantly, I had an awful bout of thrush and cortisone does cause glucose intolerance - which causes thrush.
Most people say that these drugs don't work for two months but I only took a small dose of hydroxychloroquine and I could feel it working in my fingers and shoulder even though almost imperceptible within a few days - I could press the button in the lift at work. I am very sensitive to everything including drugs and generally only need a tiny dose.
If you are scared, which I can understand, then tread warily. I am highly allergic to a lot of things including some drugs and that is my approach. I am equally scared too scared to try methotrexate.
As regards special diets, they do work. I know people who have gone completely vegan and do not eat anything fried and the RA has cleared up completely - from being particularly severe and unable to work. I could not keep that sort of a diet up. However, do not eat red meat or fried food as both are notorious for increasing inflammation in the body.
Honey...you really HAVE to treat your RA with medication (I am so sorry to say). If there was an natural or herbal treatment that was effective, I would have most definitely tried or currently be taking it (I think I've tried them all). Everyone's body IS different and everyone's body reacts differently to different treatments. Some will have horrible side effects, some will have mild, some will have NONE! Your vital organs (heart, kidney's, lungs) can come into play if you do not treat your RA to prevent further inflammation. Also, the sooner you get your RA treated and under control, the less un-reversible damage you will have. I don't mean to scare you BUT if you let it go too long the damage is done and it will be just that...done. Many take MTX with wonderful success! I totally understand your fears and the uncertainty BUT you won't know until you try. In fact, most of those I've heard of who take MTX do not have side effects. You are young...treat your RA and be healthy and happy! It will be ok and we are ALL here for you!
I think you are mistaken. RA does not necessarily have to be treated with medication. It runs in my family and has not been. My mother had it at 31 when it came on overnight and it cleared up after six months and any flare was very slight. She never used medication.
Mine came on overnight and I was very disabled. My shoulders were frozen and my hands paralysed for nine months. I literally could not write, turn a key or a tap, pour a cup of tea, hang garments up, get dressed, and was dropping everything. Electro acupuncture got my hands moving after 35 minutes and relieved my shoulder so that eventually I could dress. I followed that with Chinese herbal tablets (Dong Quai, Danshen, Frankinsense, Myrrh and Liquorice) and they had a marvellous effect. They relieved pain, swelling and inflammation in my hands within a day. There are numerous effective herbal products.
Diets work also. An Australian in-law was over here the last few weeks. She has been on a vegan diet for a few years but was previously disabled by RA and unable to work for years. She spent considerable periods in hospital because of the damage cause by methotrexate and other drugs. Likewise, others I know lost a kidney or suffered serious liver damage and many I know could not tolerate it at all. There are many people who cannot tolerate methotrexate and other drugs, possibly the majority - not everybody who has RA is on here. It certainly does not suit many people. My suggestion to the poster was to try the tablets so that she could at least stop if methotrexate did not suit her.
I think you are mistaken as far as what I was saying and rightfully so, (I did not mean to say that all-natural alternatives do not work for anyone, ever). May I ask, are you currently NOT taking any medications or injections whatsoever for your RA? If so, that is amazing! I truly wish I could find an all-natural solution as I've tried so many without "long-term" success. IF you read my profile, I am one who most certainly does not support the use of prescription medications being I've tried so many for my RA and have had horrible rare side effects.With respect, I was responding to her case in particular and wasn't referring nor meaning to refer to EVERYONE with ALL cases of RA (as I will always be sure to mention it's important to know that everyone's body responds differently to different treatments), I interpreted her post (maybe I misinterpreted what she said?) she tried alternatives and was still having pain and inflammation (which unfortunately and factually can be very dangerous because RA can attack your heart, kidneys, liver, other vital organs). This is why I said she needed to take MTX in her case. IF there is someone who is currently treating a "severe case of RA" with diet and natural alternatives alone with great success long-term, and no medications or injections at all I would LOVE to know. I do know of some "mild cases" of RA that respond to diet, herbal treatments, acupuncture, etc. (to be honest, I've tried all of those treatments with very "short term" success given I have been diagnosed with severe RA, but everyone, EVERYONE responds differently to different treatments too). I would never discourage anyone from natural treatments..EVER.
RA tends to flare up. I'm not sure how the flare ups could be evaluated as severe or mild. I had paralysing symptoms in my hands and shoulders, then arms, initially, but it moved around the body in subsequent flare ups. I knew what it was when it first happened as it runs in my family, including in my mother, and the GP said it was RA on my first visit a week later. I had been tested for it years earlier. I knew from what my mother told me that the best thing for it was to keep moving, and any sort of exercise is beneficial ranging from every day at the gym or doing serious sports to just moving around and stretching. This has been confirmed by two rheumatologists I have seen. I fully understand that some people just do not want to exercise or cannot face it because initially it is painful. Initially, I went to the gym and swimming every day which made it bearable. It certainly can be controlled alone by exercise. My mother died at 80 from an unrelated condition but she developed furring of the arteries (which I think is its most dangerous and common aspect) but there were other reasons for that. The effects you mention only happen in untreated people who probably smoke and never exercise or pay attention to diet.
I know a lot of people who have RA and they manage fine without drugs. The Australian lady I mentioned was severely incapacitated, could not work and in hospital a lot, both because of RA and largely because of the drugs. She had no quality of life. She still did a lot of exercise and is sporty but she tried a vegan diet and all her symptoms have been relieved. I have an in-law who is engaged on medical research into RA and she said diet is an overwhelming factor. She works for a major pharmaceutical company. Her brother is doing research in the US and her family were GPs for generations. I happened to mention I had it at a family party and got the full explanation.
Not so long ago, we did not have all these drugs for RA, such as in my mother's day, and people had to get on with it and cope as best they could. Something to bear in mind is that the drugs can have far worse effects on the body than RA. I have known people lose a kidney and suffer liver damage. They do not suit everybody and some people prefer other systems of medicine - it does not mean that their RA is "mild".
The Chinese herbal medicine I used was fantastic. I got it from a shop/clinic in SW London and the owner is qualified as a doctor of Chinese and Western medicine and has four shops locally and one in NE England. The same tablets are on sale in Australia and in Hong Kong where the drug company has its head office. Chinese and Ayurivic medicine are established systems of medicine from other countries and they do work and are not driven by Big Pharma like Western medicine. I took Ashwaghanda, an Indian herb, to get rid of an infection causing a cough I had suffered from for nearly 20 years. It boosts the immune system. I had nearly succeeded when I got the most awful RA flare up, paralysing me, and had to stop it. A friend, who was a virologist (and her father a doctor) recommended it to me and said I had viral pneumonia. I know other people who have used it with great success.
Anyway, best of luck. I was merely correcting the misleading impression that only Western drugs work. They suit people on here but there is a multiplier of people not on here who have RA whom they do not suit. The original poster is right to be worried. I have taken drugs that have had frightening effects and if you inject you have to suffer for three months. I had an injection of Depo Provera for endometriosis which produced a huge swelling.
I will say we all have the right to our own opinions and I base mine on my own experience (which is the only experience I can rightfully base my opinion on). RA (here in the USA, guess I need to mention that) is and can be diagnosed as "severe", "moderate", or "mild" based on various markers like bloodwork marker indicators (though these are not always a clear indicator either), Xrays, the number of joints involved/inflamed, deformities, and per individual case. Also, it needs to be clearly mentioned that even "natural treatments" can have deadly side effects. It is a fact, that many (of course not all) of the drugs used today for many diseases/illnesses are "derived" from herbs too so that being said, herbs are and can be effective in some cases and can have side effects.
Of course, you are 100% accurate that we didn't have the treatments/biologics years ago we do today! My grandmother (bless her soul) died at just 58 years of age, from RA. Rheumatoid Arthritis attacked her heart back in the 1970s. She would scream in agonizing pain (poor thing), while bedridden, and that is what I remember most of my poor grandmother.
BTW...I've suffered for years with Endometriosis stage IV (we have stages) with no help other than herbal, vitamins, and OTC Tylenol. In fact, it wasn't discovered exactly how bad my Endo. was until I was trying to get pregnant, Laparoscopic surgery showed extensive Endometriosis. Endometriosis wasn't even treated as extensively as it is today back when I was suffering. In fact, here it was very difficult to be diagnosed with Endo. My sister also had it but had no trouble getting pregnant. I am sorry about your Endo...that too is yet another very painful disease.
Hiya Nancy2010. It's such a shame none of us helped ease your concerns when you first introduced yourself, & that you were so worried you tried alternatives. I wish we could turn the clock back, you could be in such a different place by now.
Something that concerns me a little is that you were left to get on with it, that nobody from your Rheumy team went through the process of how to inject your MTX with you. You should really have had someone watch over you for your first. My Rheumy nurse showed me with a dummy syringe (this was before pens) & then watched me inject myself to ensure I was doing it correctly. I'm also bothered that your Rheumy hasn't contacted you to ask why they haven’t received any MTX monitoring blood test results, you seem to have been left to just get on with things which isn’t the best way for someone newly diagnosed.
I don't know if you have a Rheumy helpline over there but if you do give it a call & ask if someone will help & watch over you whilst you do your first injection. You need some support & this could be the best way to instigate it.
Keep in mind that more people do well with MTX than don't. It's the single most commonly prescribed DMARD for RD & associated rheumatoid diseases. Most people tolerate it well at the doses & frequency we take & if you do experience any side effects most of them improve or are better tolerated the longer you are on it. Common ones early on like nausea & headache can be helped with prescription meds, an antiemetic & pain relief. We also have extra help with MTX side effects because with it being a folate antagonist we can take folic acid to help mitigate any side effects that can cause. If you've been googling side effects you will scare yourself silly, especially if you've been doing so randomly. More reputable forums such as ours are mostly used by those newly diagnosed or people not doing so well & reaching out for experiences of others on the same meds so I can understand why it may seem imbalanced. They really are in the minority though, most people are doing ok & have no need to be here, they're getting on with their lives.
I hope all turns out well. Do keep in touch & let us know.
I’ve been on methotrexate for about 25yrs , started on tablets but changed to injections around 10yrs ago as tablets had started me feel queasy but not now. I inject on a Friday night and only experience a foggy head and a bit tired next day . Doesn’t last more than 24hrs. I’d give them a try they do make a difference. Hope you get pain under control soon x
The way I look at it, if 10% of people react then 90% don't and so statistically you'll be fine. Injections don't hurt these days as needles are very fine and it's worth getting over any fear because it's causing you unwarranted stress. I'd add that bad news sells papers and so people tend to talk about bad news whilst those who have good responses are usually too busy to waste time and just get on with life. If it also helps all medications have side effects and paracetamol can kill, I had a reaction to an everyday medication but it was unpredictable and simply bad luck. Try not to make the issue of MTX rule your thoughts and you've nothing to loose and if it doesn't work then you'll move on but equally all the other medications have dire warnings and to access them you have to have tried MTX anyway. I do sympathise but RA is treatable and life for a huge majority is completely normal. For some obviously things don't work out well but all life is a journey and has risks. The not inconsiderable risks of RA not being treated are huge. It can affect blood ( I had blood clots due to RA 8 years ago), lungs, etc etc. So buy a bar of chocolate, take the MTX out of the fridge, sit down , relax and do it. Don't overthink things and get on with life. Best wishes x
Methotrexate doesn’t usually need to be kept on the fridge. I’m sure you would have been told if it did. Only biologics need to be kept in the fridge usually.
I'm now on Orencia and that is a yes, but not sure about MTX, I had it years ago and after a while it was changed. Do try not to worry though and I've never found that temperature makes much difference its more about being quick and finding a bit flesh that you can pinch. This is not like an intermuscular injection where needles are a bit thicker. Go for it....... xx
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