Methotrexate - Good News

Very active, jogging, building boats (woodwork), healthy weight and diet and planning a 5k run in February with my daughter, determined to get a competitive time for a 54 year old.

Then RA hit my like a runaway train in January, 5 major joints each side inflamed within 3 weeks and I was ready to give up on life. Then it eased and I seemed to be recovering - so it could be post viral arthritis that would clear. But blood tests confirmed RA and I was determined I wanted MTX ASAP. There is a therapeutic window of 3 months - if treated within 3 months of onset you stand a good chance of (clinical) remission. Luckily I started the end of March.

I was determined to take the MTX regardless of side effects. First dose 7.5 increasing 2.5 each week to 15mg. A bit of nausea in the early stages for a hour or so the next day, but that was trivial compared to what I had suffered already. After 15 doses I hardly have any side effects....eating well helps and last week zero side effects.

DAS score of 2.8, nurse could not detect any inflammation in knees 2 weeks ago - not bad when I had walked 2km the weekend before; "excellent" was her comment.

So take it and don't delay.

Paul

PS: Unfortunately I strained my back and that is taking a long time to fix, and really gets me down. But life goes on and I need to set a good example to my 3 lovely daughters. I'm on slow release Tramadol and Amitriptyline ...which gives the weirdest dreams ever.

Finally back to some gentle woodworking to keep back flexible and stop me going crazy.

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  • That was great to read. I got diagnosed in may at 44 and have a very physical job (Prison Officer) I have put off my meds due to the fear of methotrexate and I didn't feel to bad. In that time things have started to get a little more painful and have found the pain to be getting worse. I spoke last week to my rhummy nurse who is great and on Monday I'm going into hospital to learn how to inject myself with methotrexate. I just hope I get the same results with it as you and thanks or your post, it's great hearing some positive news about these harsh drugs we have to take!!

  • Hi Paul - thanks for this great post - so cheering for newly diagnosed people everywhere! I think it would be great if more people came here with happy stories like yours but my guess is that when life gets back to some kind of normality most of us are too busy making up for lost time to come here and tell everyone.

    I think MTX is an amazing drug and it has definitely knocked my RA/ RD into the long grass several times but I have had long and apparently rare term tolerance issues that I haven't been able to overcome - even on a lower dose. The same has applied now to two other DMARDs and a Raynaud's drug as well (different side effects from each).

    If and when the RD comes back with a vengeance I know I will want try try more drugs to beat it back down again but for the time being it's a waiting game for me. However I still feel very cheered when I read posts like this one - long live your drug induced remission!

    I do hope the back problems subside and you can have a break from your wild dreams too.

    Twitchy x

  • Hello Toes. Lol. I have Raynaud's also but don't get to many cold spells in my fingers like I used to. I feel like that has really subsided since taking my RA meds. You mentioned you take a drug for Raynaud's and I was wondering why and what's happening to you where you have to take medication for that too. Thanks :-)

  • I will PM you the tale if Raynauds and more about the drug as it's a bit convoluted and don't want to hijack another's post with anymore stuff about me.

  • Thank you for your post! I was diagnosed in June and Monday will be my fifth dose of methotrexate. It is so encouraging to hear such a positive post.

  • I'm a new sufferer, was very fit loved my sailing and owned a successful business, can't sail anymore had to sell my business and live within the limitations of this disease I'm on medication that could take up to 3 months to work so it's a wait and see game, pain free yesterday in agony today could be worse though could be......

    FRENCH

  • Wow, that's terrible. I really hope it works for you soon stoneman

  • Shellywelly thanks, I'm making the best of it still enjoying life on the whole and lapping up the sunshine

  • Hi Paul, glad to hear you have been treated so quickly. Did you go private to get treatment so fast? I'm several months in, and only finally seeing the rheumatologist for the first time next week. In the meantime, week after week I get progressively worse and the frustration and anger i'm feeling is immense as I like you, know that the faster this is treated the better. If you didn't go private, what part of the country do you live in as it sounds like our experiences of speed of treatment are poles apart!

    Good luck x

  • Shelly,

    It's a bit of a post code lottery and how alert your GP is. I had a registrar, newly qualified so she knew her stuff, who put me on anti-inflammatory drugs (well I started on Ibuprofen myself already). I went back two weeks later when it had spread to knees/ankles and she immediately arranged blood tests at the same surgery; one week later she showed me the tests "You got a negative result on the Rheumatoid Factor so I have referred you to the Early Arthritis Clinic at Gloucester Royal Hospital - they aim to see every new patient within 3 weeks. I suspect auto-immune". That took me by surprise, but clinic did more tests and Consultant gave RA diagnosis 4 weeks later, X-ray and blood test the same day just to be cautious and the script arrived in the post the next week. So thankfully treatment started within the 3 month window.

    I've heard from the NRAS that in some areas people don't have a proper diagnosis 6 months later, but if you have mild symptoms the GP may simply diagnose muscular-skeletal problems and miss the plot.

    best wishes

    Paul

  • For me the problem wasn't with the GP, who was quite sure I had some kind of inflammatory arthritis from my blood results and symptoms. But the consultant slowed things down because despite prompt referral it took four months to see him, by which time my RD was masked by steroid injection, and then another four for things to be more conclusive - so nine months from symptoms starting to getting diagnosed. I still don't have any erosions and MTX has worked very well for my RD although I can't hack it anymore unfortunately. But I've given it over two years, and tried two other DMARds too and it really has been a great drug for me in terms of flaring and reducing inflammation.

    But just in case people panic when they see people referring to the short window of opportunity for diagnosis and treatment - it is good to get an early referral of course but if not all is not lost.

  • I'm convinced my early diagnosis & start of treatment has helped in the long run. My experience was slightly different as it was abroad but from 1 month of pain & swelling to seeing my GP to diagnostic clinic for confirmation & my RD meds 2 weeks later, so in total 6 weeks. I find it apalling that people with a chronic disease are subject to long waiting times sometimes for diagnosis & treatment when it's known that the sooner treatment commences the better the long term prognosis. I also saw my Consultant 3 monthly which again helps keep on top of any changes. Here I see mine once yearly & will not see her next time so a Registrar yet again & was warned it would be 7 months!

  • That's great to hear, good for you!

    I agree it's really important to get treatment quickly because this disease isn't going to go away on its own, unfortunately the information that comes with it is a bit scary and not always explained very well.

  • What a positive post Paul & so refreshing to hear that someone else sees MTX as their antidote. I found out yesterday that my RD is also now controlled with the help of this drug & although my DAS score was a little higher than my last of 2.04 at 3.something (can't quite remember as I omitted to write it down duh) I am so pleased with the way it's given me back my life. Unfortunately I had a break from it for 3 months last year & that was hellish but been injecting again for just over a year again now & as long as it does it's job & causes me no great concerns will continue to do so. It worries me when I read of those who are newly diagnosed fearing MTX when offered it in an attempt to help them, homing in on the possible side effects of this med. I'm convinced for many it's because it was developed as a chemo drug & need help reassuring them it's at least worth trying as the benefits are worth overcoming their fears. Few realise that the doses we need to help dampen down our immune systems are far lower than those used in in this treatment & not everyone gets side effects or those we do outweigh the consequences of not taking it & are willing to cope with a day not feeling too brill. I'd have taken horse pills to ease the pain I had when first diagnosed!!

    Well done in getting back your life with it' help & I hope your back strain eases soon so you can start training for your run. I'm the same age as you, 5"4' & 60Kg but couldn't run after a bus lol!

  • This is brilliant news keep it up!

  • That really encourages me since I am about to have my first MTX injection in a little over a week here in the States. I was dx'd April 2013 with RA with a positive CCP blood test along with the HORRID symmetrical joint pains. Also dx'd with Fibromyalgia same time. I have been on Plaquil since dx's that helped at first and now has stopped. I had all lab work done last week to make sure all is well to start the MTX, but I must admit I am very scared to put the toxins in my body. Just really scares me. I do very poorly with meds at any level, so this one really does it in for me. I have gotten much encouragement from people on this board and it has eased my concerns a bit. I just turned 52 and have to feel better than most days of 102. My rheumy put me on Tramadol, but that was a def no go. Did nothing for the pain and only made me loopy and nauseated even with food. Again, my body just does not tolerate meds very well, so I am a bit perplexed about even trying it. But.. gotta do something. Was very active..... loved to take long walks, hike etc and now find it hard to even get up after setting for 15 minutes.

    Hope that race with your daughter comes soon for you and keep me posted on the MTX. Still yes one day and no the next for me to start the MTX out of fear I suppose.

    :)

  • You're such a great advert for taking Methotrexate, which is usually our own responsibility so long as we can tolerate it, and for early referral which is so often out of our hands. Hope some health professionals 'who have the power' take note.

  • So does it not work or as well if your past three months? I was diagnosed in 2005 but docs say that I could of had my autoimmune disease since I was 13 due to xrays that showed inflammation around my lungs but it was to hard to tell. The arthritis didn't hit till I was 21. That and my problem isn't exactly RA. Blood test come up negative with RA but have the marker HBLA27. The docs say it is closer to ankylosing spondilytitis but for some reason has also effected most my peripheral joints too, more like RA does.

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