Feeling very worried about starting methotrexate, I have been told so many bad things about this drug , what other medication could I have

I did have a steriod injection on Monday it hasn't started to work yet and take co codamol for pain , I picked up the methotrexate today after bloods done on Monday they all seem abnormol liver high , esr high ect

I really don't know what to do just so worried that I am going to take a drug that's used for cancer , it must be such a harsh drug that I will have to have bloods taken every 2 weeks , and the side effects are terrible , I went into the rhemotogy dept today and left my number for the dr to call me tomorrow to speak to me urgent about my concerns and to see if he would change to another medication as I'm not happy to take it

Am I just being silly about this but heard so many bad things from people and Internet

Appricate some advice please

Thanks

Debbie

21 Replies

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  • Hello

    No you are not silly, this group of drugs "DAMARDS" can be a problem for many o us, there are many more in this group and some people get relief by trying others. Sadly I just cannot take them as my immune system is a real problem. All I can suggest is that you may eventually find one of them that suits you.

    There is a further type of drug that may be tried in the Group -TNF sometime they can be taken with the former group. So you may try those if offered, they are expensive to the NHS.

    Good luck

    BOB

  • I say don't worry mtx is the gold star treatment ! Lots of people do very well on it but if you look at the internet they probably are out getting on with their life's to write in!!! The doc says it will be a good drug for YOU! It is a disease modifying drug which is incredible as it actually modifies the disease so we don't get as many joint problems as those 20 yrs ago. They WILL monitor you regularly with blood tests and stop the drug if there is any change. Shone not all people can feel a bit nauseous so take it with food and then take a folic acid tablet as prescribed not on the mtx day. Please be hopeful, they have seen, diagnosed and prescribed for you! It's a great start. If it doesn't work in three months or you don't like it you can chat with them or even the nras helpline will give you advice. Their no is on the website nras.org.uk and they are lovely!

    So try to see the positives, everything in this game can take a whole to work and even Panadol has loads of side effects if you google it. Of course don't mess around with the mtx but I hope it works quickly for you xxxx Axx

  • You're not silly to worry - I certainly did when faced with it for the first time. But I love it now! It's worked brilliantly for me, with very few side effects after the first few weeks. When you look on the Internet you tend to find the bad examples not the good ones, but for most people it's absolutely fine. And people who have cancer have to take much, much bigger doses than we do.

    There are other drugs you can try, but everything has possible side effects, even aspirin, so that's no guarantee that you won't have problems. And of the ones that you could be offered first, methotrexate has the best liklihood of working. The biologics that Bob mentions are very expensive, and if you're int he UK you won't be offered them until you've tried other drugs and they haven't worked.

    Have a look at the National association website nras.org.uk which has lots of trustworthy advice, and ignore some of the more dodgy websites.

    But at the end of the day it's your choice, so if you're not comfortable with the idea talk to your docs about it. If left uncontrolled this is a really horrid disease, so you really do need something.

  • Hi Debbie20 I was diagnosed in may at 44 years old and I too was/am really scared of the meds. I have read perhaps to much and have put off starting the triple therapy they want me on. My nurse at the Heywood has been great and told me all the pros and cons but ultimately its my choice. I have now collected my prescriptions and am going to see the nurse on 18th to go over my options again. All that said I have been recently been talking to people who's life's have been changed for the better simply by taking these tablets so it's not all doom and gloom. I'm sure you will be fine and if they don't suit you then hopefully they will take you off them and try something else. That's what I'm hoping for when I start anyway ; )

  • Hiya Debbie. Not being silly at all, it's a facer having to take such a drug but when the first DMARD I tried wasn't effective enough on it's own MTX was included & must say it has changed my life & no longer take the other DMARD. In fact my last reply on here included saying how when I was off MTX for a few months I was in a right state & it keeps my RD mostly under control. I have very few side effects & folic acid is prescribed to take to help with those but your Rheumy will explain further about that. Not everyone experiences side effects, or like me can cope with them for the benefit it gives them. Blood tests are done more regularly when you first start treatment, possibly fortnightly, it depends on your Rheumy's preference but I have them monthly now I've been taking it so long & happy to have that done because if anything is amiss it's picked up quickly & acted upon. When my RD was particularly troublesome my dose was increased from 15mg to 20mg weekly, my next blood test picked up a bit of a problem so it was reduced back to 15mg & have remained on that ever since with good results. Everyone reacts differently but I call it my weekly antidote.

    Don't search the internet is good advice you've already received, as is having a look at the NRAS website. Typically mostly negative opinions will be in the majority as people who get on well on MTX don't need the forums or help that those who don't do well on it, so you will never get a balanced view point on any such necessary drugs for any condition. This site is more reliable as on here we will give honest views & experiences, good or bad.

    Yes, it's a cancer drug but was found in much smaller doses to work very well for a lot of people when trialled in autoimmune diseases & then awarded a licenced to be used for them. If you take a read of the link at the bottom of my reply it will explain in further detail very well from a professional's point of view. As it's taken from a medical journal I think only the first page will be of help to you as it does go into more depth & you'll probably find difficult to understand, I did & I've an idea of what's written, so no point of reading further than that page (that & it's 18 pages long lol!) unless you wish to addle your brain that is!!

    I hope you reach the right decision for you & if you're unsure ask your Rheumy to go thorough it with you or any if he could offer any alternatives. Be aware though it is considered the best first treatment & other DMARDs aren't generally as effective, as I've said already, from my experience.

    Other treatments mentioned, anti TNFs, won't be offered unless you fail to respond to at least three DMARDS I believe so won't be an option for you at this early stage & they are not without possible side effects either. But you needn't worry about that as people who have need of these drugs have tried everything else before considered for it.

    The sooner you start on whatever you decide the better you'll be & your prognosis so much better so don't worry too much, you're at least being treated & I've said it so many times before but we've all been where you are right now with difficult decisions to make but as long as you're well informed, trust in what you're Rheumy advises & happy with the results you get from whatever choices offered then happy days!

    Let us know how you get on.

    medscape.com/viewarticle/76...

  • I was u in feb x I was crying taking them scared of what I was doing. . I now take. Meths on work days no sickness any more just take heart my world has changed I no longer use crutches and my pain is muchllower . Pm me if u want to talk xxx

  • I was u in feb x I was crying taking them scared of what I was doing. . I now take. Meths on work days no sickness any more just take heart my world has changed I no longer use crutches and my pain is muchllower . Pm me if u want to talk xxx

  • You are not being silly at all. I was given MTX as sulfasalazine got nasty with me. I too was really worried about this drug and put off taking it for weeks as I had heard about the negative side effects like "it makes your hair fall out" and just the words "Cancer Drug" scared the life out of me. The dosage for inflammation is small and as long as you take as prescribed remember to take folic acid and keep check on any side affects you are worried about I think it is worth a try. You can always stop it if you feel it is not right. I had read too much negative info on the internet and not concentrated on NRAS site where people who use this are getting great help from it. I also attend an Acqa support group for arthritis sufferers and after speaking to some of the ladies there who are on this drug and said they had so much relief from it I decided I would take it. Unfortunately it was not the right drug for me but I didnt get all the nasty side effects I was so worried about. I had a bit of nausea now and then but no hair loss that I noticed in fact I think my hair has grown. The only reason I was taken off of it was because I have had a sore throat and cough so stopping it is more precaution.

    I hope you get the answers you need to make your decision. gentle hugs Joolz.

  • I feel that this drug is a hard one to get your head around .now if it was for a course and the treatment was over then I would look at it but its long term and harsh I am going to take my time and look into it more any thing that can possibly give you liver damage must be avoided hope you find your answer you are always in control of you treatment.

  • Hi Debbie,

    It is understandable that you may feel worried about taking a new drug and you are not being silly at all. We get a large number of calls to our helpline from people just like yourselves who have been prescribed MTX .

    What I can tell you is that it is the drug of choice for many rheumatologists. It has been used for a long time and is a good effective drug and is deemed to be safe. It is now regarded as the " gold standard" against which conventional DMARDs are measured and generally agreed that it should be used early in the course of RA in most people with the condition.

    As with any medication there could be possible side effects and hair loss is one that concerns many people. Rather than it being total hair loss it is actually hair thinning and will occur in about 3% of people taking MTX. If it does occur hair growth usually returns to normal on stopping treatment.

    MTX can possibly cause changes to your liver and that is why you are monitored closely with regular blood tests to check your liver is functioning OK. Any changes to your liver function would be picked up at a very early stage because of this regular monitoring and your rheumatologist would then decide whether to stop your MTX and start you on a different DMARD.

    I have put a link here for you that will give you more information, but do give us a call on the helpline if you would like to talk about it further. Our number is : 0800 298 7650 and we are here M- F 9.30am -4.30pm.

    nras.org.uk/methotrexate-in...

    Regards

    Sally

  • Hi Iam new to this site joined a couple of days ago diagnosed with RA 10 weeks ago and put on mtx side effects are a worry when u read all of them but I can say the benefits curtanly out way feeling a bit sick or headache and they ease of as u get used to taking it Iam very pleased with how it's going at the moment even thou I still don't know much about RA and brain is still a bit rattled with everything I would give it try and see how it goes we are all different and different things work

  • Hi I've been on methotrexate around 10 years,the amount we take is a very small amount for RA than what they use to treat cancer.you only have 2weekly bloods for a short while then go to monthly.its not a nice drug to take and I still suffer the side affects.i have permanent head which often turns to migrane,vomiting and hair thining and general feeling unwell but we are all different so you may not suffer at all.if you do go ahead with it hope it works for you x

  • I was diagnosed in November 2012 and yes, at the beginning I was worried about all the drugs and the side effects.

    I started with methotrexate (slowly increasing the dose) and 2 months later added hydroxychloroquine. Following a very nasty flare which was thought to be bought on by stress my consultant added Sulphazalazine, by the time I was on full dose of this drug my joints felt wonderful but I could barely function due to severe fatigue so I was taken off them. I am now 3 weeks into 25mg injectable methotrexate and tablet hydroxychoroquine, it is hoped that when injecting methotrexate it is more efficient..

    I believe that the drugs which are prescribed for RA have different effects on different people, some people are more tolerant of some of the drugs than others it is just a matter of time and patience to find out which is the best treatment for the individual. I now tried hard not to worry about some of the scary stories I read about the side effects of the drugs, I make my own assessment on the effects they have on me and work along with my wonderful rheumy team nurses and consultant. xxxx

  • Hello My experience with methotrexate is a positive one, I have had RA for 12 years and been on the drug all of the time however the dose has varied depending on blood tests. Some liver issues but generally well controlled. I have tried many other drugs beware of anti tnf !

  • Hi Debbie20. I can understand you being worried about taking methotrexate but my advice is stop listening and reading things on the internet and try it for yourself. I take 25mg each week, plus steroids plus others and to date it has worked wonders for me. I feel so much better, no more excruciating pain and I can now walk my dog regularly without limping. So if I was you, I'd give it a go because after all at this moment in time you are suffering so go for it and see what happens. Your regular blood tests will soon pin point any problems if any arise. Anyway good luck whatever you decide.

  • Thank you every body , I have read all your comments and will decide what to do over the weekend I did ask for the dr to give me a call but he hasn't yet

    I feel like my head is about to explode with all the worry ,

    I wish the steriod injection would start working but that hasn't taken any effect yet

    thank you again for all your help x

  • Hi Debbie

    I felt exactly like you and started taking MTX last week 15 mg with great reluctance. Up to now it has been fine. I have been drinking ginger tea instead of caffeine drinks which I read somewhere can help. I know I have only been on it a week so maybe it takes longer for side effects to kick in (can anyone comment on this) but i just think if it can help with the pain it is so going to be so worth it. I have felt slight nausea but that's it, I hope this will continue and that this helps you. I am now looking forward to feeling some benefit and I got peace of mind from reading all of the comments from people who have improved with this drug.

  • Hiya Iainee. As MTX is slow acting & will take time to build up in your body any side effects will in turn take time to appear. If you're fortunate like me who, although I did suffer some, I had nowhere near some of the problems some people can have who are less tolerant of some meds. Like you I take 15mg & I had nausea first, I also had tum problems & a little hair thinning the longer I took it but at my next 3 monthly appointment when my Consultant asked me how I was feeling on it he swapped me to injections. Now I still have the very slight hair loss, have a couple of iffy days not really wanting much to eat & just a bit more tired but I've got used to it & just don't plan to do an awful lot on the day after particularly.

    I hope it works as well with your as I've done on it.

  • Thanks for your reply. I thought that might be the case. It is good to know it is working well for you, fingers crossed I will be the same.

  • Hi Debbie I hace been on MTX now for almost 2 years, also Hydroxychloriquine and Sulphasalizine, my blood tolerates it very well with no problems, 3 weeks ago I started on Anti Tnf aswell with Enbril added to the mix and again no changes to my blood, I understand your fears as I put off the Anti Tnf for almost a year through being scared, but I have had no bother with it, everyone RD is individual to them and the same goes for the treatments, the way I look at it is we have nothing to lose and everything to gain from these powerful drugs, if they don't work for you the Rheumy will change them and equally if you don't tolerate them they will take you off them, they would'nt keep you on a drug if it was causing damage to you, your fears are natural, I hope you get sorted soon

  • I felt exactly as you do about MTX. I held off & held off until it just couldn't stand the pain any longer. I realise now I put myself through a lot of unnecessary pain as three months after starting MTX I was 90% pain free & had no nasty side effects. That was about 7 years ago - I now take 20mg per week & have the disease as much under control as possible. I did try sulphasalazine which didn't suit me at all, but I have had a very positive outcome from MTX. If you can manage to accept taking MTX & it works for you - it will change your life. It has been around for a long time, & I am sure if it was as toxic as some information sites say it is - it would have been withdrawn from use! I think everyone starts with 2 weekly blood tests, but if the results are normal you soon move on to longer periods between tests, I now pop along every 2 months. By the way the dose we take for RA is much less than used for cancer.

    Good luck with whatever you decide. I am sure your rheumatologist will explain everything to you.....I have found that GP's often don't know much about MTX.

    Kathy

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