Making progress

I haven't posted for ages on here as there seem to have been some techie problems. I finally got an appointment with the rheumy who, after what felt quite a brief examination said "yes, it's rheumatoid but with the right treatment you'll be able to lead a perfectly normal life". Do I hear hollow laughter? So. I should have started mtx before Christmas but a chest infection delayed that and I see the rheumy nurse tomorrow and I'm scared. Having done some homework and reading about side effects has really put the wind up me but it can't be worse than a flare, surely? Any ideas on how to cope with mtx?

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  • Pay attention to being nice to your body/metabolism and it will really help it cope with the drugs. So all the usual - good diet with lots of veg & fish, proper sleep, daily exercise and so on. Try to avoid processed food, fats and sugary snacks. Drink lots of water and avoid alcohol at least for first 6 weeks. And chances are you'll have no side effects at all, or if you do they'll only last a few weeks. I live a pretty normal life now, so it is possible....

  • Thank you. That sounds really encouraging. I do try to eat healthily already and walking the dog gets me out. The lack of a glass of nice red could make me sad though

  • Methotrexate is my best friend as it's given me my life back.... so it's worth a bit of effort to make it work for you.

    After about a 6 month's I slowly started to introduce the odd glass of wine. Now I have a glass about two or three nights a week, and it doesn't seem to affect my liver as blood tests all fine.

  • Thank you. It's good to hear of a positive view.

  • Hi Buttonhater. I started Mtx in August and like you was apprehensive. It wiped me out the first time I took it. With advice from this forum I now take it night. That works for me. I did have stomach trouble for a few days in the first few weeks, no nausea though. It was week 11 when I realised it was working for me. I do take it alongside an anti TNF though. Hoping it works for you, If you are worried about anything make sure you Spk to your rheumatology nurse, or post on here. All the best to you. X

  • Thank you Gigi. It's so kind of you to respond.

  • I too was very scared of mtx. I've been on it for about 5 months now. The only side effects I have is I sleep alot after taking it. Please remember to drink lots of water on your mtx day, as I discovered water prevents my headaches. I found out the hard way about water perventing headaches.

  • Many thanks Suzanne. All hints and tips gratefully received.

  • One mtx day I was too lazy to get a glass of water, and besides I thought I wasn't thirsty....I'll never do that again!! I now have a 2 litre bottle of water next to me on the couch and I force myself to drink it throughout the day.

    Feel free to pm me, even just to talk :)

  • Bless you, that's so kind. I reckon I feel more angry and overwhelmed than anything else.

  • You will also be put on folic acid. It counters some of the side effects.

    Jacqui

  • Thank you Jacqui.

  • I'm pleased you now have a title, though of course wish you didn't! Methotrexate puts the willys up so many people & you've done what the majority do, it's not really helpful as you've found out. If you compare those side effects to others such as biologics which those in need of them are often chomping at the bit to start they really are no different. I suppose it's because they've gone through the DMARDs & still not controlled, not a nice place to be. If you've ever read the leaflets of common otc's like paracetamol they're not exactly short. I think it's that more often than not DMARDs, & particularly MTX, are the first specialist meds they've needed to take & yes, it is scary reading so I wish more Rheumy's would do as mine did & take a little time to explain & allow their patient to ask questions to allay their fears, that way they're informed.

    I've been taking MTX since my second year, I started on 15mg, first tablets but coming up to 7 years now on injections. My Consultant recommended I took my dose throughout the day with meals, so I took 2 with breakfast, lunch & dinner & it worked well for me. Some take it just before bedtime so they can sleep through any side effects but I was advised against that, he said they'd sit on my tum & could exacerbate side effects, particularly sickness & my side effects weren't immediate, always the following day. My current dose is 17.5mg, I've tried 20mg but my liver objects though I do also take leflunomide. I don't drink anyway but if you do try not to drink alcohol until you have had your first few blood results back, just so it's clear that MTX isn't affecting your liver, alcohol can obviously muddy the results. Your Rheumy will probably advise but give it a little while then try introducing the odd glass of wine, if that's your tipple. I was told lager & wine were ok but no spirits, this was if my liver results were ever high. Nonmatter how often I told him the Consultant that initially prescribed it didn't believe I don't drink! Try to keep well hydrated too, it does help if you're flushing the kidneys & liver regularly.

    I take 5mg folic acid every day except the day I inject, there's no written guideline so Rheumy's differ in what they prescribe their patients. I'm a bit iffy the day after (tomorrow as it happens), just picky with my food (I've named it avocado day) & a little more tired. We're well monitored, usually you have fortnightly drug monitoring blood tests for 6-8 weeks then monthly as I do. If you're levels are generally good some have them less often but of course they're always read by your Rheumy, nurse or GP & any anomalies swiftly acted on. Last month my ESR rose but it seems it was just a mini flare. My GP was alarmed when I saw her this morning, she's been on holiday so another Partner had read them so she showed me the graph of my blood results on screen & it was really quite a high peak considering it's normally like a bumpy road!

    I hope MTX helps you as much as it has me. Be patient, you'll probably know but it's not fast acting so 12 weeks or so should see some improvement but it can be longer. You know we're here if you have any questions.

  • Thank you. Such a kind and considered response. I'll just have to learn patience I suppose.

  • Hi buttonhater

    I have nothing more to add other than to say I take both biologics and mtx - the mtx coming later on. I've been on it now 3-4 months and as yet it's having no significant effect. However, any side effects, whilst not pleasant , haven't been as bad as I'd prepared for and the advice given on this forum has been extremely helpful in fending them off, or at least minimising them.

    I wish you the best of luck with it all.

  • Thank you Eiram 50. So kind of you to respond

  • Hi I take both bio and mtx but although no did effects the drugs have stopped working so when I get back from holiday I'm going to phone my rheumy

  • Oh bless you, what rotten luck. Big gentle hugs coming your way

  • There is nothing I can add to so much good advice you have already been given. Like everybody else I was shocked and worried when I was diagnosed (in 2009), but for the last four years I've been leading a more or less normal life. I never read much about side effects of drugs because they never were worse than anything RA threw at me. Quite happy to put up with them. All the very best and stay as positive as you are.

  • Thank you. There's not much choice is there? Curl into a snivelling ball in the corner or simply get on with it. I'd better get busy with the starch on the upper lip

  • I've now been on mtx for a few years - by injection as I didn't tolerate orally. it took a long time to convince me, but I'm now too scared not to take it - it keeps me mobile and back to normalish. Some initial side effects like loss of appetite have settled. I still get flares, and have to be careful not to take liberties, and my hands complain a lot, but life is good. So good luck, hope it works for you

  • Thank you Janmary. That's very reassuring.

  • Hi. I have been on methotrexate since diagnosis nearly a year ago and am now taking 17.5 mg per week with very few side effects. I was on high dose steroids when started mtx but reduced them slowly with no noticeable inc in pain and stiffness so atm mtx (plus hydroxychloroquine) seem to be working (fingers crossed!). I do take folic acid 6 days a week as well and the advice to drink plenty and spread dose throughout the day is also a good one. Reading and worrying about possible side effects is natural but you may get none of them - plenty of time to look them up if you suffer any in my opinion!

  • Bless you Bookworm. A lovely positive experience for you. Thank you for sharing

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