I've had enough of this Methotrexate poison. Stopped taking the tabs and started with the metoject pen instead but now the thought of doing the jabs is making me feel as sick as I felt with the tabs. I can't stand it any longer. I'd rather be in pain than feel sick. I don't want to take anything.
Not only that but I seem to have developed red/purple blotches all over my knees which sometimes have itchy little lumps on them. And the inside of my thighs have this kind of red/purple blotchy meshwork on them.
Has anyone else found this? I hate it. I feel like my body is contaminated. I want to be free of it all. People have suggested cod liver oil but doubt it's as easy as that. I'm tempted to jack it all in and try though. So depressed and fed up.
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whitedog
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Yes it's not pleasant but try sticking with metoject they say it gets better .Just new to it myself ,been on 20mgs for two weeks and feel exhausted but can't see the point as I still have to take painkillers ,I'll try to persevere for a while yet and see how it works out ,good luck 😊
I was on the tabs for years before they suddenly started making me feel really queasy. I thought I'd be OK with the pen. My bloods were all over the place for the first few months and my guts were quite upset too so they reduced my dose slightly. My guts have settled down and my last liver function test was almost back to normal - it's just even thinking of taking the medication makes me nauseous. I can't bear the thought of feeling like this for the rest of my life. I'd rather radically change my diet and look at alternatives. It's just horrible. Bleugh!
Have you tried other drugs? Leflunomide, sulfasalazine etc?
I would go to the doctor and get checked out if I were you, just to be on safe side...re spots.
Sorry you feel so rubbish on the methotrexate. I suppose you are taking enough folic acid? Has the methotrexate made any difference to joint pain and swelling?
I was sick for about a month on methotrexate tablets, but then it wore off. Then I got really depressed, so took low dose imipramine, and that seems to have stopped now too. I am left feeling pretty wiped out, but I was feeling wiped out before methotrexate. I do still have some pain, however it's not agony like it was before methotrexate. I've been taking it about four months now.
For me, things are better with methotrexate, though far from perfect. Sounds like things are worse for you. Sorry. Can you speak to doc? Perhaps a change or lower dose?
I doubt fish oil on its own would make much difference to the disease, though very good for you. I eat oily fish about twice a week. You could try a radical diet change. It seems to work for some folks. It didn't do anything for me, sadly. Though I have changed my diet for the better.
I am sorry methotrexate has not worked for you, it has been a life changer for me and I have been taking it for over 20 years. There are many other drugs unfortunately all can result in side effects to one extent or another. Each of us react differently to different drugs and it can take time to find a combination that suits an individual.
By all means try diets and alternative treatments, some folk do find improvement but again these don't work for all.
Cod liver oil is beneficial food supplement and can be part of a general healthy diet. It is not a cure for R A. My parents were great believers in its benefits and dosed all us kids on it daily. I still developed RA as an adult.
CBD oil is another oil which has helped some folk and might be worth a try.
Inflammation, uncontrolled, will eventually damage your joints and this cant be reversed so please don't dismiss drugs completely. Go back to your rheumatologist and discuss alternatives to methotrexate. Be patient it may take time and a lot of trial and error to find the right drugs for you.
I'm afraid to say that I too got to that stage - I tried the tablets first and eventually was almost heaving before I got them out of the packet. Moved onto injections and was fine for a bit then it got me again - anticipated nausea and very down and depressed, almost suicidal, at feeling so ill every week. After 18 months of it I asked to come off it. I have tried two other DMARDs which gave me different side effects but none so bad as the mtx nausea, headaches and fatigue. So now having failed on 3 DMARDs I am waiting to hear if I qualify for biologics. I really sympathise and understand how you are feeling on the mtx. Some would say you should persist with it, but personally, as I suffer from emetophobia (fear of vomiting) it was a bad drug for me and looking back I am shocked at how long I managed to stay on it feeling like i did. I would explain to your rheumy how ill and low it is making you feel and ask if you could try something different. I completely get that you would rather suffer the pain of RA than feeling sick every week. I was the same and still stand by that. Worst bit for me was, the horrible stuff worked and I was 'in remission'! Not so now, but not feeling sick is wonderful, despite the fact that I can see and feel more damage has occurred to my joints whilst not having the RA under control with meds, but hoping the biologic will work some magic. Good luck, and I hope you feel better soon.
I too stopped taking MTX and Sulphasaline tabs on 22nd Dec. It was memorable because i had had three previous months of various infections, antibiotics etc. I was feeling like you exhausted, fed up with the side effects. I had persevered for 18 mths!! I feel i am still lucky in that i have early RA in my hands and feet. Pain can be bad and feet are beginning to make me unsteady, however i would rather have no meds than how i was feeling on them. Went to my Rheumatologist yesterday and told her i had stopped them. She was surprised (even though i had been moaning about the meds since i was put on them. She wanted to know my reasons. I went through the various ways i had been feeling. She did not seem convinced that i was having major problems with the meds! I asked if i could stay off meds and see how my RA goes. Got an X-ray of my feet and she agreed to leave me for 3 mths and see the nurse next time. I know she is just shoving me to the side but i don't care. If she says i have to go back on same meds then i will fight for a change, or change my consultant. It is all about cost. Hope you work it out Whitedog, know exactly how you feel. Also have you seen how many people are saying the same thing on this site?
But how much of "people saying the same thing on this site" is because those that are doing well don't post? I'm lucky enough to be completely fine with MTX, Sulpha and hydroxy and I know that many are as well - perhaps the majority.
It's unfortunate for you that you are having such problems, but biologics don't suit everyone either, particularly if you are prone to infections. There's no perfect, side effect free drug for us sadly. And yes there is a reluctance to move us on to the hugely expensive drugs, and an insistance on trying the more conventional drugs first. I think that's fair enough as a starting point since funds are so tight. What I think is wrong is that once it's clear that they are needed they should be provided without hesitation.
Thanks helixhelix, i want to be that person that says the drugs are working!! Totally agree. I am a positive kind of person and with this disease it has rocked my self esteem. It makes me question my own judgement. This site is my go to place, when i can get straight answers.
I also believe there is a difference between wanted and needed as well helixhelix. I agree about the people saying the same thing too, I'm great on LEF and RA is something I live with not suffer with. My consultant is good its never a problem to see someone and I believe that its vital to believe that something will work and give it a fair chance, its not all about cost but it is about trying the most effective first and MTX is very effective for a huge amount of people.
All drugs have side effects and back in Dec I had intravenous antibiotcs that was not fun and I was very sick and given a medication that stopped that I wonder why people who feel sick on meds can't be given ame type of anti sickness med.
I completely agree about people not posting when the drugs do work! I haven't posted for ages for this very reason, (although I have dropped in for a browse occasionally). My drugs were working well and I was happy following my routine and then my consultant left and his replacement decided to try me on something else because I'd never gone into remission and perhaps a different drug regime would be better. Well that didn't work! I felt so unwell I refused to stay on them after using them for just one month - it took three months of no drugs at all before they gave in and I was allowed to go back on my original mtx which had worked for eight years!
I got lots of help and encouragement from others on this site in the early days after being diagnosed, so have decided it's important to check in more often when I'm feeling good, as well as the times I'm worried and poorly, to continue to share experiences with others who may be struggling. Just knowing other people are in the same boat always helps doesn't it?
Hi thanks so much for all your replies. Glad it's not just me who feels this way. The way I feel at the moment is that I just don't want to take anything. Sick of pumping horrible meds into my body. I don't even feel like my life (which is pretty crap right now) is that important. If I developed something worse like cancer I'd reject the meds and bow out gracefully, like my dad did. I take 3 lots of eye drops (inflammatory eye disease/glaucoma) which I don't have a problem with and I can just about take a thyroxine tab and lansoprazole tab each morning without feeling queasy. But I don't take as many folic acid tabs as I should because it just feels like one too many. I will contact the hospital about the rashes and ask if I can have a break at least.
I've been through spells of drug phobia in last 7 years, and it is a personal choice,so I do understand your reluctance. But the time i tapered off them proved to me pretty quickly that I needed them. So now I try to view them like food....I need to eat every day, and I need to take my drugs too. Could you ask your GP about some counselling? You sound as if you need to talk things though with someone.
(As a side point, if you weren't taking your folic acid then not surprising that you struggled with MTX....)
Drug phobia. That's a good way to describe it. That's just how it feels. It's interesting that my mum was the same. Particularly in her final years, she would sometimes vomit after taking tablets and I seem to be developing a lot of the diseases she had too. I'll call the hospital next week. After I ditched the tablets I went to see one of the rheumatology nurses and she told me I wasn't alone in feeling how I did about them.
I have just developed a phobia about injecting and have changed to tablets once again. So understand how you are feeling. I did not inject for 3weeks because of it. But could tell my joints started to hurt a lot. Take care
Methotrexate only works for about 30% of patients. Sounds like it's really not for you and it's time to try something else. Go back to rheumatologist soonest.
Absolutely, but you had said "work".... I actually thought the tolerance levels were better than that too, but I guess it's quite hard to measure as tolerance can sometimes be a subjective thing once you've dealt with the absolute things like your liver not tolerating it.
I said it only works for 30% and meant that. If you break the users down into 3 thirds (approx 30% each) then one third it works for, one third cannot tolerate (which is what Helix said) and one third get no significant benefit with no major side effects. The health authorities (or insurance companies depending on where you live) want folk to start on Methotrexate because (a) it does work for some AND (b) its very cheap. In some countries they go straight to the biologicals which work for 80%+ of patients.
I live in France, and yes they move you on to biologics much more quickly. But healthcare costs much more than in U.K., and it is not free at point of delivery. So there is a balance to find. I don't think either country has quite found it....UK is too penny pinching, and France is unaffordable expensive.
You need to ring your rheumatology nurse I have tried many of the drugs and ended up with the same side effects I am now using Benepali injections. I kept telling the nurse I could not tolerate the drugs until they finally but me on the biologic. They will try to put you off for as long as possible because of the cost of these drugs. Just like to say I have not had any side effects with these injections.
Hello Whitedog, I share your hatred of these drugs. I use Methotrexate and prednisone and hate all the side effects, for two days after the methotrexate dose i am useless and have to stay close to bathroom. One month ago I started CBD oil and so far great. It has greatly reduced my inflammation and also the side effects from the methotrexate. Pain is much better. It has also lowered my blood pressure enough to lower my dosage on that. I have high hopes to get off the methotrexate and prednisone soon. Wow, can't wait. I know that there are many companies selling the oil and its mind boggling. I did a fair amount of research and found one I liked. They provide Lab results so you know exactly what you are taking. In order to buy it you sign into the company either as a customer or as an associate, both are free. To find it go to my website at wendyspicer.myctfocbd.com/ Have a look and do your own research. Its a godsend for me. Good luck on your journey.
No 55MC this oil is not banned as the cbd has been extracted. There is approximately .3% THC in the oil. In other words the high is taken out leaving the medicinal properties.
🤔 Lifestyle & dietary changes for you & your rheumatologist to explore/ research (only if this ‘type of thing’ seriously/ sincerely interests you) ( healthunlocked.com/nras/pos... , healthunlocked.com/nras/pos... , healthunlocked.com/cure-art... , healthunlocked.com/cure-art.... ) ’in conjunction with’ your meds (or, if all meds are failing you, ’in place of ‘ your meds) [It’s not for ‘dabblers ‘n dilettantes’ who merely wish to ‘dip a toe’ in then scream from the rafters it’s all ‘stuff ‘n nonsense’, ‘too difficult’, ‘unsustainable’, or ‘doomed to fail’, etc.. ☺️ ]
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Exactly, Whitedog, popping any kind of pill 💊 (whether ‘natural’ 🌿 or ‘pharmaceutical’ ⚗️ ) is not the easy ‘fix it’ — not a 1-spot ‘magical’ ✨ answer. 😌 🙏
Marching toward improvement/ healing is far, far more complex/ nuanced — long term, life-long.
Merely broader, longer term thoughts if interested for future, Jasonteddancer — once this difficult 2-year escalation subsides. 🙏 😌 Perhaps merely considerations to help improve home & work life over upcoming years? 🤔
Wishing you speedy relief & realistic hope for future long-term, long-lasting improvements, Jasonteddancer. 😌 🙏 🍀 🌺 🌞
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Yes, 55MC, if you’ve a Rheumatologist 👩⚕️👨⚕️ who’s incapable of hearing you ( healthunlocked.com/cure-art... ), it may be time to (unapologetically) find one who can truly hear 👂 you & is capable of thinking outside a narrow, restrictive box 📦 .
They (good rheums.) are out there. They do exist. 🦄 ☺️ It’s a matter of finding 🕵️♀️ 🔎 one who’s actually listening 👂 & actually understanding what you’re saying — and, who’s actually capable of "thinking outside the 📦 ".
[Highly advanced/ prized education 👩🎓, training 👨🏫 , honed skills 👩🔬 & experience 👨⚕️ is 1 thing — the inability to see 👁 👁 what’s before one’s eyes 👀 — to not dismiss, ‘pooh pooh’, ignore, by-pass, shunt aside, belittle, ‘turn a blind eye’ toward, etc. — is something entirely different. 😳 ]
Allow you heart 💓 , mind 🧠 , gut to guide you 🗺 on how to proceed. 🤔
Don’t derail/ undermine your own gawd-given judgment 👩⚖️ , your own ability to weigh evidence ⚖️ to arrive at sensible conclusions. 👍👍
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For enough of us, bodunchar ’s words ( healthunlocked.com/nras/pos... ) have rung bell-clang clear 🔔 (prophetically 🔮) true. (Merely scroll downward toward bottom of the 2-year old post, to hear the explanation that fits a few too many of us.)
I have teentype spots ?whiteheads but rheumy tells me it's not the sulfa. BTW son said avoid cod liver oil [ heart attack links?] but suggested krill ??
Please don't think I'm getting on my high horse, it's not intended as a reply to you whitedog rather a general one re MTX. I'm aware that the thread has turned somewhat into methotrexate bashing, though I do appreciate if one person has an issue with a med then naturally others will share their experiences, both positive & negative. I am concerned though that it's possible newbies could be reading & having the collywobbles about either starting MTX now or if already started it wondering if they should have. Of course not everyone responds the same, some, no matter how hard they try, don't do well or can't for one reason or another continue taking MTX but it's by no means typical of those who have replied. They're not in the majority they're the 25 - 30%, actually a lower percentage than other DMARDs, we just don't read so regularly of those for whom it keeps their disease in check, or at least in low disease activity. By comparison we rarely have threads singing it's praises, or positive stories other than from a few who choose to post here, myself included (MTX veteran of 8 years) because they're getting on with living their lives. To that end I thought it judicious to post this from ARUK, it may not be relative to everyone but we are all on the same side.
Methotrexate - what do patients need to know, and when?
Essential treatment or a toxic anti-cancer drug? Our new research aims to improve the way patients find out the facts about methotrexate, an important but much-maligned medication.
Despite the advent of biological drugs for rheumatoid and other forms of inflammatory arthritis over the past decade, the drug that remains the mainstay of treatment for the vast majority of patients is methotrexate.
It’s a drug that can work extremely effectively in people with mild to moderate rheumatoid arthritis, controlling symptoms over long periods of time and working well in combination with other disease-modifying anti-rheumatic drugs (DMARDs) and biologics such as anti-TNF therapies.
While some people can develop unacceptable side-effects and others find it ineffective over time, methotrexate has remained an important part of the treatment regime. And yet…no other drugs, not anti-TNF therapy, not the B-cell inhibiting drug rituximab, not even steroids, elicit such strong reactions among patients as methotrexate. To put it bluntly, many people are terrified of it, largely because of its reputation as an anti-cancer drug.
Margaret Turner, whose rheumatoid arthritis was diagnosed 15 years ago, was told about methotrexate by her consultant rheumatologist who she feelingly describes as lacking in ‘relationship skills’. “I was told I was going on it as steroids and sulphasalazine hadn’t worked, and that was more or less it. It was scary because I knew it was associated with conditions like cancer, and the consultant didn’t exactly reduce my anxiety.”
Sandra Robinson, senior rheumatology research nurse at North Tyneside Hospital in North Shields, who counsels patients about to go on methotrexate, says Margaret’s concerns about going on the drug are typical.
“Methotrexate generates a real fear factor,” she says. “The majority of patients don’t know anything about methotrexate and they’ll go onto the internet and start finding out about it, that it can be toxic and it’s a drug used to treat cancer, and they’ll ask us things like: ’Is rheumatoid arthritis a form of cancer then and am I going to die?’ Relatives start researching it too, and so a kind of cycle of fear is created.
“It’s important that patients are given all the information they need. Yes, methotrexate is used to treat cancer but we use it in much smaller doses in rheumatology, and it also works really, really well.”
Rheumatologist Dr David Walker, also based at North Tyneside Hospital and Newcastle University, who has been involved in in developing patient education material for Arthritis Research UK for many years, adds: “It’s important before starting a drug for the patient to understand what the expected benefit is, how that will manifest, and to know the risks, and this should be part of the decision to prescribe or take the medication. It’s especially important for drugs such as methotrexate, where the effect is delayed, and side-effects are anticipated and monitored for.”
Currently, patients being offered methotrexate are told about the drug and its pros and cons by their rheumatologist or specialist rheumatology nurses in the rheumatology clinic.
For many patients, a session with a rheumatology nurse and a read-through of Arthritis Research UK’s drug sheet about methotrexate is sufficient to allay their fears. However, there is evidence that not all nurses giving the information, and counselling patients about the drug’s use, are particularly confident about doing so. Little formal education on how to counsel patients is given; even an experienced research nurse as Sandra Robinson has never had any training.
That’s why Arthritis Research UK has awarded a 12-month educational project grant to Dr Walker and Sandra Robinson and colleagues to identify the gaps in patients’ knowledge and to find out more about this lack of confidence in nurses who give out the information. The aim is to develop a new educational package aimed at nurses, possibly an app, or similarly handy available tool.
Sandra Robinson’s vast experience has told her that it’s not just about the quality and amount of information that nurses give to patients, but the timing of it that is crucial.
“When you first counsel people about it, you tend to have patients who have just been diagnosed, who have to face the fact that they’re going to be on drugs for the rest of their lives. They’re often shell-shocked, and don’t ask a lot of questions. That tends to come later,” she says. “So they go home and start researching into it, and finding out for themselves. There needs to be better follow-up and we need to think about how we do that.”
Margaret Turner agrees. “Timing of counselling is very important,” she says. “Being told you have rheumatoid arthritis is a grieving process, and if you can take on the psychological aspects of the condition you’re then more likely to deal with the physical side.”
Previous Arthritis Research UK-funded work has shown the importance of effective patient information in encouraging people taking the drugs properly. Adherence is improved when people understand the reasons for taking them. Other research on people with ankylosing spondyitis confirmed that patients want to receive information at certain times – at times of changes in their condition, for example. This issue of timing is one of the aspects that the Newcastle team will be looking at.
It’s important that newly-diagnosed arthritis patients receive the best information about all drugs but Sandra believes that methotrexate is a special case. ”It’s very widely used, and, for example, with anti-TNF therapy patients get a lot more support from their local hospital, they have to meet certain treatment scores, go to out-patients for their infusions, and have more access to doctors and nurses,” she says. “Whereas patients on methotrexate, who are monitored by their GPs, don’t necessarily go back into hospital, except to see their rheumatologist every six months.”
As part of the study, the team will develop and distribute a national questionnaire, asking nurses whether they have received any training, how they would respond to a variety of scenarios; for example, what they would tell a patient with a chest infection, or how they would counsel patients about issues such as vaccinations and alcohol use. Another strand of work will involve semi-structured interviews with nurses of varying levels of experience, plus a pilot study, videoing consultations of counselling sessions, to learn more about what makes an effective interaction between nurse and patient. The outcome should mean patients get the best information to take their drugs safely and effectively.
Margaret Turner, who is now 61, still takes methotrexate with the anti-TNF drug etanercept, as her condition is severe and has fluctuated over the years. Her experience of being told about etanercept was very different to the earlier methotrexate experience, but by then she had moved to a different hospital, where she says she felt more empowered.
She adds: “The rheumatologist was able to assuage my fears about drugs, and there are specialist nurses whom I could phone for advice and help. It was quite different.”
• Arthritis Research UK’s drug sheet on methotrexate and booklet on rheumatoid arthritis are available to read or download at arthritisresearchuk.org or by calling 0300 790 0400
• For more information call the National Rheumatoid Arthritis Society (nras) helpline 0800 298 7650 or go to nras.org.uk
Methotrexate fact box
• Methotrexate has been used in high doses to treat cancer since the 1950s, and has been widely used as the ‘gold-standard’ for mild to moderate rheumatoid and other forms of inflammatory arthritis for the past 40 years.
• Methotrexate is a type of drug known as a disease-modifying anti-rheumatic drug (DMARD). It is available either as injection or tablet form.
• It works by damping down the immune system rather than simply treating symptoms, so people taking it are more prone to developing infections.
• Side-effects can include sickness, diarrhoea, hair loss and skin rashes, but many people tolerate the drug well. Taking folic acid reduces the likelihood of side-effects.
• People taking the drug are regularly monitored by their GP and have monthly blood tests.
Thanks for posting this. This is off w original posted subject (sorry to the OP) but just wanted to add For any newbies having to make MTX decision, I am nearly 1 year into it - tablets at first, changed after 4 weeks as felt so sick and huge headaches to injections which I tolerate much better. I want to tell newcomers that while I am not my pre RA self, and need much more rest and pacing, when I look back to how severely the RA was affecting me this time last year, I can see that the MTX has worked to significantly reduce my disease activity. I could not dress myself last March as my fingers were so stiff and painful and swollen, and I had not been able to make a fist for months. Other limbs and movement in general and also affected. Now I can touch all my fingertips to each other and have regained most of my hand function. It is daunting having to take cytotoxic drugs but sometimes it is better than the alternative (extreme pain and difficulty).
Try baking powder half teaspoons 6oz water before breakfast I've had great pain reduction especially in my hands. Plus cod liver oil daily. Turmeric on dinner.
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