Hi all, hope your all as pain free as possible.
I've just taken my first dose of Methotrexate after dinner tonight, felt very apprehensive but also optimistic. Do any of you guys out there have any Methotrexate success stories you'd like to share to help me stay positive? X
I stayed on methotrexate for 16 years, I'm having a short break from it right now from a separate problem. I call it my lifeline as it really helps me to function, and I never had any side effects. My best wishes to you and hope your feeling better soon.
LOL! One of these days whoever manufactures Methotrexate should start paying me! Truly, that was a joke, it just pains me that people worry so much about this drug (just as I did) and so often unnecessarily.
Perhaps I did get a bit of a headache or something at first with Mtx, hard to know because I was in such a mess anyway from PsA. But in the years that followed I've had, well, zero side effects. I think feeling a bit tired the next day is fairly common, but I don't, not at all.
Methotrexate made me feel a whole lot better. It was like WD40 for my joints, eased them up over time (and it DOES take time to work, maybe a couple of months). Pain diminished and my ESR went down to normal levels. It didn't tackle the swelling, nothing did until I started Humira. But I still take Mtx alongside Humira & I'm still on good terms with it.
Incidentally, it's essential to drink a lot of water with Mtx, not just on Mtx day but every day. That helps prevent side effects.
Good luck! Let us know how you get on.
Thanks postle2.
I've just scrolled down and seen the other mtx post😂. Certainly a popular theme eh!
I'm feeling optimistic, I didn't have any noticeable side effects from sulf so I'm hoping it will be the same.
Thank you for the tip of water drinking, it all helps.
Well, I'm a 7 year user! Been my best DMARD, though tablets did test me a bit to begin with. If memory serves I continued with headaches but I'm not sure if that could have been the HCQ I was also taking. Anyway, I do remember that I felt better once it was stopped & just taking MTX so my guess is it hadn't cleared my body, but my Consultant sold it so well, pro's & possible cons, I was determined to give it the best go I could & glad I did. After a year I needed an increase but my new Consultant chose to prescribe injections which I've been on ever since at varying doses, currently 17.5mg because any higher & my liver grumbles.
I did have some hair loss initially but only my hairdresser & I noticed. She cut it into a different style & shorter which is much easier to do as I can't use a hairdryer any more, OA has seen to that! When I have an increase in dose there's a little more in my brush but it soon settles. The new growth has a different texture & is definitely curly, having had fine straight hair all my life it's given it body so it's actually done me a favour!
Folic acid doses do seem to differ between Rheumys, I first had just the one 5mg I took the day after, then when I had some nausea the day before as well but my current Rheumy prefers every day except MTX day & I have no side effects at all. When I did have nausea I ate more bland food the day I took my tablets but I think it was the extra dose of folic acid that helped because the nausea went. It was suggested I took the tablets throughout the day with meals so say 15mg was taken as 2 tablets with breakfast, lunch & dinner. Now I just inject in the morning when I take my morning meds & have breakfast (for breakfast read coffee!). I'm a little more tired than normal the day after inject & have a little less appetite, but the next day I'm back to normal. I drink plenty of water, it sure helps if you keep hydrated.
I hope you do as well on it as I have, many more of us do than don't. x
Hi nomoreheels
I'm taking 10 mg folic acid the day before so I hope this keeps the nausea away. I did suspect that mtx worked well for more than did not, unfortunately people tend to advertise the negative side effects but when it's working we tend to quietly get on with it. My hair is naturally very thick and fast curly as I'm mixed race, maybe mine will straighten 😉.
I've woken up this morning and feel OK, so fingers crossed x
Hello
I'm up to my second dose this Wednesday and both times I have felt sick and very groggy, maybe a bit like a hangover. I sincerely hope this will pass. I don't think I could cope with losing a day a week. I started increasing my water intake. Are there any tips anyone has?
The first 9 weeks on MTX I did feel weird, but it passed. Now it's fine, and has worked very well for last 6 years.
As well as water, I think improving lifestyle really helped me tolerate it. So a good diet (lots veg & fish and v little fatty, sugary stuff) regular exercise at whatever level you can cope with, trying to get stress out of my life, and sleep.
Thanks Helix. I've been following a mainly plant based diet for a while now, no refined sugar, low carb. I'm sure it's helping, let's face it, we are what we eat!
I have had sickness, nausea and worst of all dysgeusia (A terrible metallic taste) after all the RA drugs I've been on, sulphasalazine being the worst. I find eating ginger helpful...the crystallised chunks are nice, or even ginger biscuits help, (not so much supplements) and wearing sea travel bands is really helpful. I keep a pair in my handbag and a pair by my bed so I can pop them on anytime. They have always helped for me and are not just a placebo. I also have had to cut out spicy and highly seasoned foods and processed or rich meats can also set it off. I suck mints and chew sugar free gum and drink loads of water to help my body detox.
I'm on methotrexate injections now and that has helped a lot with the nausea but the taste thing never really goes away. My rheumy says it's a chemical thing from the drugs. I also have folic acid every day except my injection day.
Some of these things may help you, so give them a try. I'd also be grateful to hear of tips from any other readers, especially for the taste thing! It's like having pregnancy nausea all over again, all the time, and I've already done that three times over for real and thought those days were past!!
Best wishes, hope your drugs work soon.
It is daunting starting on Methotrexate, but it has helped me so much.
I was diagnosed about 3 years ago, and started on Hydroxychloroquine initially then MXT was added. It took several months to get going but the relief was amazing.
I had a period of about 18 months when I felt relatively human again, but the last 6 months have not been so good. My MXT dose was upped about 7 weeks ago and I'm starting to feel the benefit again.
Don't be scared, it really is the big daddy of RA treatments and despite any side effects is still so brilliant.
It doesn't work quickly, doesn't work for everyone but is well worth persevering with. I had 18 months of remission - I'm hoping to get there again 😮
Keep positive and keep an open mind xx
I've taken MTX 35 years, was one of the first to go on it in my area. Only stopped for two pregnancies and 3 years when I was neutropenic. Most successful drug I've taken and I've tried a lot.
Thanks for the information BoneyC. That certainly is a very long time! Good to hear the positives. Thank you
Yes. I have been on mxt for 14 years with no problems. The only time I had to stop taking it for 8 weeks gave me the worst flare up I have ever had. I had 23 joints affected at the same time and my husband had to push my back to sit me up then come round to the front to pull me up, excruciating journey to hospital and rheumatologist nearly fainted when he saw how bad I was but the point of this reply is that as soon as I got back on it I started to pick up and I have now been in remission for approx. 3/4 years with small flares now and then but I cope with them and they don't seem to last long. Methotrexate, I know, doesn't suit everyone but it has been my lifeline. I really hope that you find relief from it too.
Hi Gwynedd, MTX has helped with the inflammation but nothing for the pain, and my hair has definitely thinned since starting MTX so I'm hoping that will soon stop once my body gets used to taking the meds
good luck with everything
I have been on Methotreexate for over 8 years and feeling much better. I have only one slight problem, it would make me sleepy aft4r about half hour. So now zi take it at night with no more problems. Also I am taking Embrel now for last three years.
Thanks scrappie54,
I took my tablets last night, before bed. Felt ok this morning but I've had to have a nap this afternoon, something I never do. I've also had a bit of nausea but it hasn't stopped me eating 😁, that really would be a disaster for me! 😂I'm optimistic that the side effects won't get any worse than that.
Second methotrexate dose
First dose of Methotrexate tomorrow! *fingers crossed*
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