Terrified to start tis drug

Reading these posts is terrifying - it seems the medication causes pain - I have been undiagnosed with this for I believe about a decade and had my worst flare this May lasting til December with swollen ankles and knee pain... one rheumy told me my number of 20 was nothing - sees numbers in the 1000s - said I have fibro - she was also very rude and dismissive - weeks later 2nd rheumy says because she sees people with numbers in the 1000s and now my number is 15 (I think this is the ana count)?? should have asked more questions - head was spinning... she wants to get me on to methotrexate with the hope of catching an early window and getting this into remission... shingles vaccine required first - but currently have a chest infection/cold so process stalled up for a bit... I am truly terrified as my RA pain is not excruciating but it certainly is limiting my mobility. age 51

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  • Many people take Mtx without problems. And side effects, if they happen, may well be minor. I guess you must have read a post about someone who thinks Mtx increases their pain. However I've belonged to various forums since being diagnosed with Psoriatic Arthritis 5 years ago (I've been on Mtx ever since with just one short break) and of all the thousands of posts I must have read in that time, Mtx actually causing or increasing pain is a pretty rare topic.

    It's a shame that you feel so scared of Mtx. The bad press it gets on the internet can be a real obstacle for those starting this drug. When people are wrestling with side effects they need to let rip and share ideas with others but of course those who aren't having any problems are less likely to contribute to forums etc.

    A few glasses of wine and I'm a menace to society .... for most of my life I've avoided painkillers and when I have resorted to the odd Nurofen it felt like a big decision .... I'm not exactly Mrs Drug Fiend! But me & Mtx get along just fine. One key thing, make sure you drink a fair amount of water at regular intervals, always! That really helps prevent Mtx side effects. I do hope everything goes well from here on, Mtx included.

  • Thank you this is encouraging. I guess we cling to the hope that holistic is better and feel scared by the window of opportunity put forth by rheumotologist for remission. So much contradicting info it feels overwhelming. I appreciate the sharing of a positive experience.

  • It's good to get up to speed on the drugs and the disease. But relying on the internet for information at a worrying time can definitely have pitfalls. I would very much recommend considering how credible every source is, focusing particularly on who made the site. and why, and how well qualified the authors are to discuss RA and its treatment.

    I see that elsewhere you refer to Mtx as a chemo drug. Yet I don't think it would have any impact on cancer whatsoever in the small amounts we take, taking what is a tiny amount compared to its use in chemotherapy does make it a different proposition altogether. I think a lot of us find that the worst time is looking at the tablets, preparing to take them for the first time. I was in tears. Gulped 'em down, prepared for my head to start spinning round and green fumes to come out of my ears. Nothing happened, it was a bit dull to tell the truth!

  • The drug work fantastically for many people. It didn't work for me but I needed to try. The swelling and pain I had was to the point I wanted to try anything. Everyone is different. A friend of mine calls Mtx her wonder drug. I take sulfasalazin and it works for me, but read the posts on here and you will see so many people post awful things about it. No two people are the same nor is their tolerance to medications.

    You should remember people often post for advice because things are not going well. The way life is people who these drugs are working for and have no issues are probably out enjoying life and not feeling the need to post how they are feeling.

    If the meds don't work for you they can be stopped, but they might just be what's going to help you get to remission which lets face it we all strive for. Good luck xxx

  • Thank you. I have always been an optimistic person and have to date always found ways to overcome issues in my life Sams- drama and perseverance has always led to a better place... this feels like the monster that one isn't sure where to grab onto it... it's hand, it's tail, befriend it, slay it ... you get the point. You are right... when we are out there living life we are not generally posting or seeking on posts... thank you for that renewed perspective.

  • I'm a year older, had RA for 46 years and taken MTX for 35 years with virtually no problems. Hopefully you'll be absolutely fine too.

  • Encouraging... thank you with gratitude

  • Same me been taking it since 2014 and had no problems with it and as the others have said what works for others doesn't work for everyone I drink gallons off water every day so don't get any side effects and I take it last thing at night before bed so if there were problems I would sleep them off

  • Twice now mention of importance of water uptake... I've never been good at that so correcting that immediately before I even start the med. Thank you.

  • Don't be terrified. Give it a chance. It may just be the drug that's going to make your life better in many respects. Good luck.

  • Thanks for the encouragement

  • Methotrexate is the most commonly prescribed RA drug, so will be talked about a lot and that will mean that you read the best and worst experiences on here. For most, it is well-tolerated. Probably the most common side effect is nausea, but this is still not something you will definitely get and may well be mild if you do. It can be managed and can improve over time. More severe side effects include some that you will be monitored for and are rarer.

    As others have said, a complaint of MTX causing more pain is rare. It is more likely that it would decrease your pain, by getting the RA under better control. If it doesn't work well enough for you there will be lot of options in terms of adding other drugs to the MTX or changing to another drug if necessary. Hopefully the supportive comments on this thread have shown you that all drugs can be negative or positive. Sometimes you read more negatives because people having a problem with a drug have more to say, but you will often find if you ask that others have more positive stories to share.

    Victoria

    (NRAS)

  • Thank you Victoria. I think the first fears start with knowing it is a chemo drug. One worries about hair loss, loss of time so many things...mostly I think it is the complete unknown and feeling vulnerable to that...

  • Hiya prairiegirl, welcome. Sorry you've reason to seek us out but I can reassure you that if it wasn't thought necessary your Rheumy wouldn't have recommended your first treatment, MTX. You're correct in thinking your Rheumy is reacting to the window of opportunity, it's considered the earlier you start on meds, even if you maybe feel it's a bit heavy handed, the better the response & the chances of less joint damage, clinical remission isn't unheard of either! So, whatever your number 20 related to you must have other inflammatory signs from when you were examined or from imaging to diagnose you.

    Whilst it was my second DMARD MTX has been the longest serving. I diagnosed seropositive back in 2008 & been on MTX since the following year, at first tablets but I've been injecting since 2007. I take 6 x 5mg folic acid a week & really don't have any side effects except being a little tired the next day & picky with food, little appetite.

    I wonder if you're concern about MTX causing pain is because of a post written by a member a couple of months ago? I can't think of any others, it's so unusual. It is an often spoken of med but then it's the most regularly prescribed one when first diagnosed so it will have many posts dedicated to it! Often it's concern, it's often the first specialist med people have been prescribed so best to keep to reputable sites when looking for personal experiences because there are some horror stories out there, not all reliable. So any questions just ask, we'll help where we can with experiences, there's little we don't know between us.

    We have a few other members Canada, I'm sure they'll be along to introduce themselves. The NRAS site is a UK based charity but we welcome everyone from everywhere! 🙂

  • Thank you. Interestingly enough my images show little slight osteoarthritis in one knee and she finds the symptoms baffling not so much keeping with RA she is going after the number only for remission. One says prayers that the diagnosis is correct... the autoimmune world is a bit baffling. I appreciate the invite back to ask away on this forum... has me feeling less alone..

    Not used to having the lens on me so to speak.

    Thank you

  • Thanks for the above comments that MTX is widely used and for most not a issue, because when you read the side effects they are alarming for a young person who has never been on meds and now has AS. Ankolosing Spondilities. So in short it is better to start as soon as you know even if your not havng alot of bad days.

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