I'm persistently ill I want to come of the methotrexate

I have had arthritis for a long time and have had many treatments. I have been taking methotrexate for over a year now and I feel pretty awful. In the first three months of 2016 I got one virus after another with a persistent night cough. I have had pretty much constant headaches and always feel like I am about to fall asleep. It's impossible to tell whether it has improved my RA because it varies so greatly and always has done. Some days it's pretty bad, others I feel okay but I felt like that with or without the methotrexate. But what I didn't get was constant viruses, headaches and tiredness. I expected side effects in the first weeks but if anything it's getting worse and worse. The only thing that works are my painkillers which of course are only relieving the pain not the RA but beggars can't be choosers.

My Rheumatologist won't listen, he won't consider anything else, so my plan is to come off it myself and write to him and tell him my decision and why I have made it.

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  • I'm the same plus I've got a sore throat and earache as well,I was at the Rheumy a month ago and I was supposed t be going on Biologics I'm still waiting for a answer so I'm phoning them tomorow t tell them I'm not taking any more methetrexate as its not doing any good, I'm also on sulfazalasine and hydroxocloroquine but my RA is not under control

  • That's pretty bad. I know all drugs carry risks but I can't spend the rest of my life having virus after virus. I have written my letter and will send it tomorrow. I prefer to keep things in writing. I have written that I am open minded towards other treatments and I expect those treating me to be the same.

    It sounds as though you need a complete drugs review, because everyone of those drugs are putting strain on your body, which may be a risk worth taking if they are working but if they aren't working..........

  • See reply at the bottom....messed up...sorry

  • Oh Pinky you can't go on like this. When you say he won't listen do you mean to your opinion of MTX or that you're having such a rough time with it? I know it was a new one you saw last time but do your appointments work like mine, I see my Rheumy once a year & a Registrar at the other six month appointment? If they do you not think it would be wise not to make the decision yourself to come off it & risk going into a flare & see if the Registrar is more open to having a proper discussion about coming off it & discuss your options? 

    Have you changed over to injections yet? If you have & you still feel wretched then I think you have a case for a fail but if you've not yet gone onto injections could you bring yourself to give them a go? I was much better once I started injecting & increased folic acid to 6 days, my side effects lessened to just being a little more tired & less appetite the day after, a big improvement. MTX is an immunosuppressant but mild in comparison to other treatments like biologics. Have investigations been done as to why you've had so many viruses, it may not be the MTX & if you do need to progress to biologics what then? It's your choice of course & your Rheumy should respect that, I'm just trying to look at it from a different angle, I've not had so much as a cold in over two years despite my h having them & I've been on 17.5mg & 20mg, I don't take Vitamin C, all I've done is eat 3 clementines or mandarins a day! Have you had your vitamin levels checked, or changed your diet at all? Just trying to think of other reasons which could be why you've been so poorly.

  • There have been no other changes in my lifestyle which could account for all these viruses. I eat a very healthy diet. I have been a Vegan now for over a decade so I usually get more than my five a day. And I am so careful to get everything I need it my diet. Protein, Vitamins, Minerals I've got them well covered. I also take a supplement to be on the safe side.

    I never got coughs and colds and viruses before going onto the methotrexate. I grew up in a small house with four younger siblings and escaped every infection they ever got. .

    Obviously I don't like having arthritis, but I have had it my whole life. You don't get used to the pain as such but I know where I stand with it. This constant low level monotonous illness is something I can't manage. JIA is a part of me and it's a b****r but this is not how it was treated when I was younger. When I had a bad flare up the doctors threw everything including the kitchen sink to get it under control. Not just drugs but intensive physio and special splints at night, loads of things. Then I would be weaned off the drugs and kept off them as much as possible. Now I am expected to stay on drugs constantly and no real concern is shown when I do flare up.

    I am not sure if it works differently if you have juvenile arthritis. Maybe it does. I have had some really amazing experts working hard to treat me but those treating me now don't care about what those specialists did and what they discovered worked for me. They seem to have a set plan to stick most people on particular drugs, regardless of their individual needs and history.

    I'm not scared of flare ups as such. They are part of me like my brown eyes and wavy hair. Flare ups can be dealt with as long as you've got the right people in your corner. I'm scared that when I do have flare ups the people treating me won't listen and won't give me the right help at the right time.

  • Have you considered changing Rheumy's or even hospitals because this kind of attitude tends to come from the department lead? If you're not confident in the team treating you that can make a difference in how treatment is accepted & it sounds as though you're not happy with them. In my experience it's a two way thing & if you're not included in decisions then you'll always be unhappy with the care even if reasonably well controlled.

  • I agree that you should have a rheumatologist that treats what you say with respect.  And there are lots of options for treatments so it's daft not even to discuss it.  Do you get on well with your GP?  If so, you could explain how you feel and ask to be referred to a different rheumy?   You could also write to PALS at your hospital and say how disappointed you are at this trenchant attitude.  One of the big problems with RA is that there's a low level of compliance - ie people not taking the drugs as proposed.  But with this sort of attitude you can see why!

    The only thing I would suggest you do is re-read your letter before you send it, and think about whether it explains how you feel calmly and without too much blame or emotion.  Even tho' this rheumy has behaved badly, you don't need to get a reputation for being difficult.  Sad, as it shouldn't be like that,but it is.  So try not to fall out completely with your rheumy as he/she probably knows all the others in the area. 

    Good luck, and hope you get some better treatment ASAP. 

  • Hi. I was sorry to read your story. In the end after switching to MTX jabs and didn't feel any better re side effects it was discovered I was alergic to MTX. I felt so ill.on it. What sort of rhuematigist doesn't listen to their patient?  Not good enough.  I hope things get better for you

  • Hi Pinksugarmouse,

    I was the same on Mtx always ill, my two girls said I had changed so much and wanted their Mum back. I also had hair loss which made me depressed. Luckily my Rheumy weened me off of Mtx and put me on Lefludomide. Sadly it hasn't done much good and I have started to loose a significant amount of hair. He is weening me off that now. I am also on Sulfa, I have read that it can cause hair loss too so I am now wondering if it could that. At the moment I have a sore throat and keep getting earache, makes me wonder if it is all worth it. However we have to keep positive and hope eventually to get on a drug that will suit us. Don't take no for an answer, we know our own bodies and how we feel, ring your rhuemy again and tell him to ween you gently off the mtx. Don't just stop taking it, good luck with it all. 

  • Do it gradually then. I was taken off mtx suddenly and had a terrible flare including of oa in knees. I'm only gradually getting over this more than 2 years on

  • I was luckier - the rheumatologist listened when I said I could not bear to take methotrexate any more. I had D&V for most of the week after each injection and very large mouth ulcers which made it difficult to eat and sleep. I was told by others that it had affected my memory and ability to converse - I had become slow and was finding it difficult to find the right words and had to have lists everywhere. 

    All of this has resolved since I stopped and went on azothiaprine (I had tried every other DMARD and am not eligible or suitable for biologics). Except for minor intestinal hurry, I am so much better and although I'm still having some flares there is no sign of joint damage.

  • Do you have a rheumy nurse you could discuss this with? They might be a bit more empathetic at listen to what you are saying.

    Alternatively what about your GP I could not cope with methotrexate but it was ages until I saw the consultant so went to my GP told him how ill I was feeling and said I wanted to stop it he agreed so when I next saw the consultant I could say I discussed this with my GP...

    It seems unreasonable that the consultant is not listening to you or respecting that you know your body.

  • Have you had your Disease Activity Score (DAS) assessed recently? This is an examination that your rheumatologist or specialist nurse will do to indicate how your RA is being controlled, or not. This also guides them to make decisions about which next steps to take in your treatment. The higher you DAS the more active your RA is and that indicates a change in therapy is required.

    Also you haven't mentioned if you are taking oral or injectable methotrexate, many people find that they can tolerate the MTX much better by injection as it doesn't effect the gut so much and can sometimes be taken in lower doses but be just as effective.

    Take a look at nras.org.uk/dmards where there are some video clips of people talking about going onto injectable MTX.

    Also to know more about the DAS assessment visit nras.org.uk/disease-activit...

    We can send you a little Know Your DAS booklet that you may find helpful. Drop an email to enquiries@nras.org.uk if you'd like one popped in the post to you.

    Regards

    Clare

  • Hi

    I haven't read the entire thread so this may have already been mentioned, but if you just stop taking a prescribed medication without the consent of the Doctor it will go on tour records as non-compliance. This probably won't help when it comes to being prescribed anything else. 

    Far better to keep moaning;  the letter is a good idea but just to emphasise the problems you are having with the medication in question - not to tell the doctor you are ignoring his advice. They tend to get a bit miffed when you do that. 

    In my experience. 

    🤒🤕😷

  • would suggest if you are on a high dose you consider injections with folic acid on the other days and like nomoreheels says eat a lot of fruit and check in with your gp re persistant infections dont just stop otherwise you may have a serious flare get other meds in place first- good luck - ask for an earlier rheum appt and write down what you wish to say.

  • Hi pinksugarmouse,

    so sorry you are having such a rough time of things at the moment. Please do call the helpline to talk about the options available to you if you need to.

    best wishes

    Beverley (NRAS Helpline)

  • I take Leflodamide and it did in the first few weeks cause me worse pain that the RA did, but then the pan went and I felt better then great. And still do ! for me its a very good medication. No aches, no pain, np swelling and no fatigue. 

    Obviously we all know what works for one may not work for someone else but its worth talking about. So don't be put off and please don't stop the meds without advice as I had blood clots linked to RA and you don't want that.

  • Hi all I phoned my rheumy secretary this morning about me going on biologics and she's getting me down in the next couple off weeks for scans on my hands as my left ones swollen and black and blue , and the biologics there was a problem with my rheumy nurse off sick so they haven't forgot about me , I said to her don't worry I'll keep phoning you if you do, so everything's in hand panic over haha

  • I pinksugarmouse,   My husband was diagnosed with rheumatoid arthritis a year ago, and was told he should be on Methotrexate but due to his chronically infected lungs, the Rheumatologist wouldn't be able to prescribe it for him because it "causes further lung damage."  The Rheumatologist tried every which way to stop my husband having his knees, (with which he could not walk at all at the time and which were affected by osteo-arthritis, from his occupation, not RA,) replaced and tried to force my husband to have Sulphasalazine and that Hydroxychloroquin.  My husband refused, had both knees replaced, can walk fine now, and there is no trace of any RA in his hands.  So we were surprised today at the Rheumatology Clinic when the Nurse insisted he should be on something to "suppress his immune system."  He again told her no and it was like refusing to be an experiment victim in Nazi Germany!  We were practically thrown out without the barest attempt at politeness.  He got better on Turmeric Capsules and ordinary Aspirin. After our row with the Nurse, she finally agreed he could contact the Clinic again, if the swollen, red joints ever came back. It's your body, not your Rheumatologist's, and you have to make him listen!  Good luck.

  • I'm sorry you have a doctor who won't listen, pinksugarmouse. I've been in that position, and it's awful. As well as being ill and untreated, I started to doubt my own judgement, and even my sanity... However, in my case, I was untreated because I was undiagnosed... It took about 4 years from the onset of serious symptoms for me to get a diagnosis of 'inflammatory arthritis', and this was changed to psoriatic arthritis 4 months later, just in February. Because my disease was untreated, it ran riot in my joints. My feet started to go wonky first, then two years ago I had a hip replacement, and then my hands started deforming too. I can't walk more than a few metres without pain, and my hand function is hit-and-miss. I will need a knee replacement within a couple of years, and probably other surgery too. The thing is, RD/RA/IA is destructive: it's not just that it gives you pain; that pain is a *symptom* of the joint damage that the disease is doing. So if you come off all meds, you might feel less ill, and you might be able to deal with the level of pain, but the disease will start damaging your joints again... Personally, I would not come off meds altogether until I had tried everything, because the stakes are too high. 

    If you come off meds, pinksugarmouse, you are letting your rheumy off the hook, and taking all the risk yourself. I think a letter is a good idea, but not one that says you're stopping all treatment. Instead, how about using your anger at how badly you are being cared for to fight for better treatment? The side effects you describe are NOT acceptable - say so - and say that obviously you are not tolerating MTX (in this form?) and you want to try something else. You have other options too, like getting back up from PALS are changing rheumies. I really hope you can get sorted, pinksugarmouse - you deserve better!

  • I think it has taken me putting my foot down and refusing to take any more MTX that has resulted in anyone actually listening. I decided not to send the letter in the end, but called and left a message with the Rheumatology secretary saying just to pass on the message that after much consideration I had not taken the last two doses of MTX and I had no intention of going back on it because nobody was taking my concerns seriously. I also said that what I took from my last appointment that I was expected to either stay on the MTX or just come off it, no alternatives were discussed but I had decided on the latter.

    The secretary seemed concerned and immediately said 'oh I wouldn't come off your drugs without speaking to your rheumatologist.' I said 'I haven't seen my rheumatologist for two years because he has been off sick for so long, I have just seen locums and different people every time with no real consistency. As for the medication these were the options offered by the locum take it or don't take it. So I have given it a far shot and now I've had enough and I am not taking it.'

    The rheumatology nurse called me this morning and said 'it's the gold standard treatment, but it doesn't work well for everyone. I will send you some information about Sulfasalazine and Hydroxychloroquine they aren't as toxic as MTX.'

    I don't know anything about these drugs but the phrase 'less toxic' sounded like a good starting point. I don't know why the rheumatologist wouldn't consider anything else, but it seems that if you are willing to stand your ground and not be fobbed off then people will listen.

    I have recently found out that most people with RA have to try 2 or 3 DMARD's before finding one that works well for them, so I am far from unusual. Now to do some research on these two drugs.

  • I'm glad you have had some action - lets hope it will continue.  If there is a rheumy nurse helpline number of the info you are sent make sure you note it for the future.  Nurses are usually more receptive to day to day issues.

    I think it is easier for the medics to dismiss side effects of a drug when any effects do not show up on blood tests.  For me many DMARD's threw my bloods so apart from feeling bad on them it was a straightforward decision to have to swap.

    Unfortunately it is just a case of choosing one and trying it as there is no easy way to determine which would suit you best (if only) and there is the usual 3 months to be fully effective.  It is said that hydroxy is the milder one but depends on how active your disease is but others take both hydroxy and sulpha together.

    NRAS and arthritis research both have pages relating to types of drugs.

    Many consultants like to try and keep MTX going as many biologics have been proven to work better in conjunction with MTX if you need to go down this road in the future.     Don't worry If you do need biologics in the future there are several options that can be given without MTX.    Farm

  • I'm pleased you didn't send the letter, I find it sometimes helps to write a letter to get it all out when faced with something like this but to actually send it can be another story when I read it again! Anyway, I'm pleased now you've spoken to the Secretary you're being taken seriously & it appears options are being offered. I think you're right, you're fortunate if you respond well to your first DMARD & most of us who are still on one (or more) & not had to progress to biologics are on their second or even third. My first was hydroxychloroquine but side effects became too distruptive & it started being less effective too so methotrexate was added. The two together didn't work so HCQ was withdrawn leaving me with MTX which has worked well for 7 years. Only now do I need another DMARD adding because I still have disease activity & I don't tolerate an increase from 17.5mg to 20mg, my liver doesn't like it either. At the last apppointment HCQ was suggested & I said no, I won't try that again, so I've to choose between leflunomide or sulfasalazine. I've mulled it over & done my research & tomorrow is Rheumy day & I'm still undecided!! As they say I used to be indecisive but now I'm not so sure lol.

    I hope whichever is considered the better option for you works & if you have to have side effects they're tolerable.

  • Yay, GO pinksugarmouse! :D

  • I think I will try the hydroxy first as it is the mildest. The only serious side effect mentioned is possible eye sight changes. Obviously eyesight is not something you should take for granted. But on conducting a fair bit of research, it's very far and usually only found in people who have been taking a large dose for over five years.

    I have been a bit lax with my eye tests (I am spot on with my daughter's though) but I have booked one this weekend in anticipation and will have one every 12mths whether I go onto this drug or not. There is no excuse. The dentist I avoid because my jaw has stiffened from RA and I can't open it very wide and it's really uncomfortable, but there is no excuse for missing eye tests.

    I hope that this will work and I won't need anything else and can stay on it for five years until I would want to consider something else because of my eyesight. Fingers crossed.

    Thank you everyone for your support and advice xx

  • I wouldn't quit my Methotrexate injections on my own.  I don't really know your situation, but you must have a Rheumatologist that you get along with and will listen.  In the past I have fired a few of them.  It is your health at stake not theirs.  There are good ones and bad ones.  Get one that will listen to you.  There are many medications after Methotrexate to help you.  You just have to find the one that works for you, once that is achieved maybe you won't need the pain meds or maybe able to reduce it some.  Blessings!

  • A month ago?  What kind of Doctor is that?  If my doctor took a month to switch my meds I'd fire him and get a new Rheumatologist.  Maybe suggest Humira or Enbrel.  But this disease is way too painful to sit back and wait, after all it takes up to six weeks for some of these meds to fully work.  Blessings!

  • I can't 'fire him' I don't pay him. To be fair it's not just been him, a lot of the problems have occurred because my rhemy  has been off sick for so long and I have been seeing different people who don't know my medical history. I wasn't happy with this locum but to be honest why would he care what I do or don't do he probably won't be working at the same hospital in six months time and it will be someone else again. I haven't seen my rheumatologist since 2014 and I am not likely to see them at any point during 2016.

    I can't even put my foot down and insist on my case being transferred to another rheumatologist because out of three two are off long term sick and one is on maternity leave!

  • Oh Wow what alot of posts! I hope you are able to make sense of what is best for you; but in the end you do want whats best. In our times of treatment most of us have wanted to give up all meds till someone listens! I did that early on and shocked my rheumy when I had a massive flare, he tried to put me on lefluamide but my blood pressure was so high that day I had to wait till it was resolved which took another 3 months, as you can imagine no MTX and nothing else I was in a right state; 3 years on and settled on 20mg INJECTABLE MTX thinking alls well and I didn't meds anymore I asked for them to be reduced another year later it was to 15mg but after 6 months I was flaring again so now back up to 17.5mg. But what is important is to keep checking with your GP my bloods were changing my crp and esr had doubled over two months and nobody took any notice till I went to gp telling him how ill I felt, he gave my two weeks of double strength antibiotics and I felt better straight away. It's not always your side effects, because our immune system is low, low grade infections can take hold and cause us more issues than those not on these drugs. Keep with it, it does take time and none of us want to believe we have to take these drugs, but we don't have years of hindsight either. All the best of treatment for the future. Carol

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