Hi everyone....

I was finally started on methotrexate and was wondering how long it has taken you guys to see any changes. I just took my 4th dose so I'm probably still a ways out. Any feedback would be appreciated.

[nomoreheels]

Hiya Kelly. I noticed a marked difference only a few weeks into taking it but I'd already been on hydroxychloroquine just over a year so not really the best example. Generally it's given that you should notice a difference by 12 weeks, so you've a bit to go yet until it's reached it's potential. That said it will be building up in your system but you may not have noticed anything yet.

I hope it's a good DMARD for you. I've been taking it 5 years now & considered controlled & it only takes 3 weeks off it to notice my symptoms returning so I'm no doubt it keeps my RD at bay!

[allanah]

Great news you are started on mtx! The general ball park figure is 3 months but if it's not helping then there are plenty of other dmards to try. But hopefully this will be great for you xxx

[Jacki08]

Hi Kelly---- I have been taking hydrox and mthx for 12 weeks now. Started to feel better " in myself" if that makes sense, after about 6 weeks--- felt more alive and got my energy back etc. I can move around easier, kneel on the floor etc but still have lots of hand pain so my dose has been increased to 20 as from last week. Stick with it and you should feel a difference soon x

[mary53]

Hi I'm similar to jacki08 . 13th week this week. It's been really gradual. By Christmas, so about four weeks ago the pain really subtly eased and in my self I gradually started feeling less weighed down. Not a complete cure now but pain manageable and feel like doing more. As an aside hangover feelings on day after methotrexate have waned a lot as well. Good luck

[Hidden in reply to mary53]

I also feel horrible the day after taking it. I sleep and sleep which I usually cannot do but my body must need it. I just can't seem to function at all on that day but I'm glad to know that it gets better.

[nomoreheels in reply to Hidden]

I try not to do anything the day after i inject because I'm weary & just not bright or clear headed if you understand? It's nothing do be concerned about if you feel dopey, it's your body reacting to the MTX & you'll probably find it will lessen the longer you take it so do as you're doing & just sleep it off if you can. I find I'm less inclined to want to eat much as well but these two things I find acceptable compared to not having it because the pain & swelling returns pretty quickly.

[JamieRN in reply to Hidden]

See if UR Rheumatologist will divide UR doses like mine did to help with the tiredness and nausea. I did 1 mg for 5 days for a few weeks until I felt better then 2.5 twice a week for a few weeks more then well I told u the rest. Never reached that 10 mg mark tho my blood work was showing it was building as my RA AND LUPUS numbers were coming down......then as I told u the ceiling fell in. My Rheumotologist always told me if u feel like u need a nap. Take one. Do what UR body is telling you.

[Cornishrex]

Hi, similar to jackie and Mary, I had my 12th dose on Sunday just gone. 10/12.5mg for the first 4 weeks then 15mg for the last 8 weeks.

Unlike some others, I never felt unwell or tired, I just had sore hands and feet, which MRI scans showed were tenosynovitis (slight inflammation in my tendon sheaths). the rheumy gave me a steroid injection back in October, which reduced the pain enormously overnight. But since then I've continued to have a dull ache all day every day which has never gone away. Fit flops are great. I was waiting for the magical 12 weeks to come and go hoping that the ache would go. So a bit disappointed that nothing has happened yet. Waiting to see my rheumy in feb to see what he thinks.

So be prepared for a wait, but don't necessarily expect the world to change at 12 weeks. Maybe it will,, maybe it won't.

[Cornishrex]

PS I'm just on MTX, nothing else.

[nomoreheels in reply to Cornishrex]

Do you think you'd benefit from an anti inflammatory Cornishrex? MTX is the only DMARD I have & without my NSAID I don't feel as good, I feel achy & fluey almost. Next time you see your

Rheumy or even your GP I would see what he thinks. I also take low dose steroids, though I'm not suggesting that's necessary but just that saying MTX alone doesn't let me get on with life quite the same as MTX with my other meds, it's the combination that does.

[Cornishrex in reply to nomoreheels]

Thanks nomoreheels. To be honest, I'd rather not, and I'm not convinced that the pain is caused by inflammation as opposed to sore tendons caused by long term tenosynovitis. Experimenting with ibuprofen has not made a difference and as I've said elsewhere, my crp level is 0.4 m/l currently (esr 6). Feeling the pain lets me know exactly what the MTX is, or rather is not, doing. My problem possibly is that I'm in denial. Or I'm not .....

[nomoreheels in reply to Cornishrex]

Mm, sounds like your Rheumy needs to be doing further investigations do you not think?

[Cornishrex in reply to nomoreheels]

Yes, well, he was in two minds whether to even prescribe me MTX, as opposed to first trying a single steroid injection directly into my hands under op. But then decided to go with MTX because my feet hurt too. I'm game to keep going with the MTX until I see rheumy in feb because I'm one of the lucky ones who has no side effects at all, so far, and I know that this "window of opportunity" is very important, if it's relevant to me. We'll see. Just bought a pair of fit flop trainers which should tide me over ....

[nomoreheels in reply to Cornishrex]

That is so good to hear you've no side effects from MTX. I sometimes think it's not good for newbies to it to keep hearing of the ones who do but that's the nature of the site, most of the people who use it are struggling, but because those who do well, even find the side effects tolerable compared to the alternative, have no need to be here! As you say the window of opportunity is important & many miss it if they dilly dally because it's a misunderstood med & their Rheumy hasn't had the time or not as thorough as some & explained it's history as my Consultant did. Let us know how your appointment goes won't you.

[Cornishrex in reply to nomoreheels]

The one thing I have noticed from this forum is that different rheumies are prescribing different levels and timings of folic acid. Mine put me on 10mg folic acid, to be taken 24 hours before my MTX dose. One the of GPs said they thought that was quite a high dose and that 5mg was more normal, but it wouldn't do me any harm. Anyway, I have no adverse effects from the MTX at all, so maybe that level of folic acid has helped. Food for thought for other readers who might be having difficulties...

[nomoreheels in reply to Cornishrex]

Yes, I replied to another member who is only taking one 5mg. I started on 5mg the day before, then the day before & after, then was increased to 6 a week! That said I'm better on it but 10mg is unusual I think. The US is different again only 1 or 2 mg generally but it is so individual & I also think so much can depend on how much folate we take in naturally in our food so no wonder it differs for everyone & why Rheumy's don't all sing from the same hymn sheet.

[Hidden]

I have found that 800 mg of ibuprofen help me more than my prescription anti-inflammatory. I also take dilaudid for pain because I also have Sjogrens and a couple other issues that cause intense pain. I'm hoping I will be able to go down a bit on it as the metho takes effect, but my dr says I will most likely need it for the rest of my life, at least on an as needed basis. Right now, it's the only thing helping me to function and have some quality of life. I am so sensitive to so many medications and have had reactions that I'm hoping I have finally found the combination that works for me.

[JamieRN in reply to Hidden]

Kelly, me again. Idk if UR from the UK OR US BUT here in the US , in Oct , nationwide due to the horrible abuse of RX pain meds , all pain meds must be rx'd by a pain management md who is also an anesthesiologist or a neurologist. Of course this doesn't apply to getting pain control in a hospital but it still must be written by one of the 2 mentioned above after they evaluated u , even post surgery. The Law went further to include RA AND Lupus patients MUST be seen by the pain specialist/anesthesiologist as an out patient at the Most every month as the law only allows a 30 day supply of a narcotic pain killer. This was done because so many of us do have the painful other nasty conditions that come with RA and the fact being RA HURTS BY ITSELF ALONE. I see both a pain specialist/ anesthesiologist for my RA /Lupus AND a neurologist for the migraines, organ pain as Lupus attacks UR organs and the seizures which developed last year from the Lupus. See I told u I was a wreck lol but don't get me wrong. There is no double RX'ing going on. The pain meds are strictly given by my Neuro as that part of me is the most severe and complicated. They speak and confer regularly on me and share what they decide with me. It also helps I work with both of them in the hospital and they know I'm as straight as an arrow and don't like narcotics but I have no choice as I can not have NSAIDS as I have kidney problems and high B/p even on 4 B/p meds. Yes I'm a hot southern mess! I am also prescribed physical therapy for my RA. MAYBE being an RN FOR 30 years I understand immensily how important following Dr orders are. I'm very thankful for the Narcotic Law being passed in Oct. I'm not deluding myself thinking it will stop the opiate drug trade, if ppl want it they will find another way to get it. So my closing statement is from a song and my mother ingrained in my head growing up " it don't matter how u feel girl , it only matters how u look!"

[Hidden in reply to JamieRN]

I get my pain meds from my orthopedist who specializes in RA. I am in the US. I do only get a 30'day supply at a time. Thankfully where these are concerned I have a healthy fear of meds. I know so many people who have problems with it. I'm a recovering alcoholic and the rooms of AA are full of opiate addicts. I feel for them, because most of the time it starts out innocently enough. I have been on one opiate or another for almost 4 years without problems thank goodness.

[Hidden in reply to JamieRN]

I am also a souther girl originally. North Carolina and my moms family is in Tennessee. I am rate full for these meds for the quality of life they allow me and I cannot take steroids because of AVN. I also have Sjögren's, RLS, and possibly sero neg Lupus. The jury is still out on the lupus. My Rh fator is extremely high and I have tons of textbook symptoms but am ANA neg. so I know a bit about being a bit of a hot mess myself. Lol

[nomoreheels in reply to Hidden]

I hope so too Kelly, it really makes a difference as you say to quality of life & how we function. It can be the case that sometimes Rheumy's overlook that point, generally the ones who don't listen to us & it's important isn't it?

[JamieRN]

Hi Kelly. I live in the US. I VE noticed most on this forum are in the UK so my answer may vary. I was officially diagnosed with RA and LUPUS commonly called RHUPUS It's treated with the same meds. I'm a RN ALSO. AS u are aware ppl and their reactions to medications vary. For me , I took 5mg divided into 5 days ( 1mg day ) to begin with to avoid nausea. Then progressed up until I was on 10 mg ( the max dose) my rheumatologist told me I wouldn't notice much for about 2 months as the drug builds up in UR system. I was also on Plaquenil. About the 2 month mark I felt awful , so run down and just like I had the flu. I ended up hospitalized as the MTX sent my blood count plummeting I basically had no immune system Also I am 50 and never have been over 100 pounds soaking wet and I do not diet. It's just me. I gained 30 lbs in 2 months that I was on the mtx. It had shut my thyroid completely down. So with transfusions , the withdrawal of MTX from my regime I was back to normal blood counts ( all of them ) in 30 days and weighed 101 pounds so thyroid came back to life. So in short, I'm now only maintained on plaquenil , no study drugs as I have other medical issues that cropped up after taking MTX that are contra indicators to the biologics and study drugs. So I do the best I can. Exercise , swim , I live in FLORIDA and everyone has a pool , including myself and on my bad days I rest. All people are different in how they tolerate drugs so don't let my story scare u. I know many ppl doing great on MTX. Just expect 8-12 weeks for the MTX to meet its full potential. You will see subtle changes earlier, as I did in my hands , they weren't stiff in the am at about week 4. So good luck darling. Let me know how you do. I don't post much but read post everyday. I only post when I feel that tug at my heart that this person needs the truth and the facts. Listen to UR body. Good luck!

[Hidden in reply to JamieRN]

I too am in the US in western NY. My family lives in Vero Beach. The cold here definitely makes for a hard winter! I am going home for a couple weeks next month and cannot wait to get my poor body into the pool. I am 5'10 and have weighed around 130-135 since high school (41 now) and when all of this started 3 years ago I went from about 140 to 110. I slowly got back up to 120 and since starting the metho 3 weeks ago I have lost 5 pound. I sure hope it helps, I'm determined to stick it out.

[Paulromi]

For me it was about 12 weeks. My side effects got worse as that time frame approached that's when it builds up in your body I guess. I do the injection and drinking lots of water helps. Around week 15 or so the side effects stopped.

[NeonkittyUK]

It was nine weeks for me. I think that 3 months is about the average. It worked great for 8 or 9 years then lost some potency, so went on injectable which gave it more potency! (Now on something else as well.) Good luck and hope for a quickly response for you.

[brit2013]

Hi Kelly. I started mtx 5weeks ago, I'm in pain at the moment but there's no inflammation there so I'm hoping it's starting to work, I also feel rubbish the next day not every week but mostly feeling sick & with three young children it's tough on me!! I'm hoping it works soon for you x

[Lizzyroo]

Hi KellyHW

just spotted your post and I reckon that we are in the same place as it were. I have just taken week 4 of my MTX as well. Counting down the weeks, hoping for an improvement soon. Take care of yourself

Lizzyroo

[nomoreheels in reply to Lizzyroo]

Then my reply relates to you too Lizzyroo!