Methotrexate and tiredness

mummyb
mummyb Member Posts: 1,231
edited 26. Nov 2012, 05:16 in Living with Arthritis archive
Hi guys, its been a while since I've been on and its good to see that the usual high level of support is still here for those that need it.

I'm looking for a bit of advice please, I'm now on 25mg of mtx and also hydroxychloriquine, alongside painkillers etc. I take my mtx on a Friday evening and am finding that for the next few days I can sleep for England! Some weekends are wiped out completely! I wondered if this was anyone elses expreience.

I've spoken to my rheumy nurse who said I'd probably be better on mtx injections and am currently awaiting an appointment to learn how to do the injections. She says that this should minimise the side effects. Does anyone have any experience of this and if so does it make a difference.

I'll be interested to hear if other people have similar experiences. Its good to be back in touch, and as always, thanks for being there.

best wishes, Brenda :smile:
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Comments

  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi mummyb

    nice to see you back......as for tiredness i have days too where I cannot seem to get motivated....I am on mtx tabs and take mine on a fri night too........I normally have my waves of tiredness and pain mid week when i have probably done too much at the weekend.....
    Not that I run around (i wish) but trying to stay on a high for family and friends, and not resting inbetween.

    Good luck with the mtx inj and I hope they make a difference.

    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's nice to hear from you again - where have you been? I will assume that you deserted us as things were better. This is a recurrent theme and yes, meth can you make you feel very tired and yes, the injected version can minimise that reaction (and its other side effects) as a smaller dose is required - the liquid form is more potent than the tablet form. I am on the injections (which I do myself) and I am very rarely troubled by side effects. (I was put on the injections as I developed a rash on the tablets - which I also did with the injected form but that was my fault, I forgot about meth and sunlight!) I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lizzie7ne
    lizzie7ne Member Posts: 154
    edited 30. Nov -1, 00:00
    Hi, I was on 25mg oral methotrexate for 2 and a half years and the tiredness, as well as general unwell feeling was bad. I switched to methotrexate injections 25 mg a few weeks ago and there has been a significant improvement for me. Yes I am still tired the next day but the level of tiredness is much reduced, and I have no other side effects.
    For me the change to injections has been very beneficial. lizzie
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Brenda
    Its lovely to have you back with us, sorry I cant help with any advice, but I just want to send you some hugs ((((()))) and I really hope your rheumy can help.
    Wishing you well with everything
    Love
    Barbara xx
    Love
    Barbara
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    I forgot about meth and sunlight!

    ??? Is there a problem? I'm careful in the sun as I used to be on something or other that many sued over - it brought me out in huge itchy blisters if I went near the sun. I seem fine now though.

    I often get what I call a ‘methotrexate day’, the day after taking it or the day after that. When it happens (by no means every week) I just accept it and go into my lazy slob mode. I’m fine next day.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Yes, stickywicket, there can be. I managed to get a very nasty rash last summer when we were away in Westward Ho! I had to resort to calamine lotion - loathsome stuff. The rash was all over my decolletage and neck, (back and front) it itched and stung like a child born out of wedlock and made life very miserable for a few days. The local chemist told me to use at least a factor 30. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi mummyb
    I'm on 12.5mg metho once a week.I get odd days when I feel more tired than others,but there doesn't appear any set pattern.So many other factors can play their part I cannot put this tiredness down to any one cause. :???:
    Ron
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Thanks, DD. I don't possess a decolletage since the mastectomy (I didn't have much of a one before) so I should be OK on that...er....front.

    When I had the blisters all over my arm I slept (I use the term loosely) with my arm dangling in a bowl of cold water. My dearly beloved got rained on every time I turned over.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,792
    edited 30. Nov -1, 00:00
    HI MUMMYB!!!!

    Brilliant to see you!

    I reckon as l have no experience, if you are ok with needles it's got to be worth a try...that's the kind of person I am - try anything once!!! (well almost :oops: )

    Love

    toni xx
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hello

    Yep, I take meth on a tues and on wed and sometimes thu I sleep, sleep, sleep.

    I was at the Rheumy last week and she suggested the same as you, I am awaiting a nurse to call me to arrange injections. My Rheumy said that it should help sickness but not tiredness? I am hoping she is wrong as it is the tiredness that is a bother.

    Good luck and all the best with it.
    Carol Keep smiling :lol:
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Brenda

    I was interested to read your post because I have the same problem. I am currently on 20mg mtx and I am really struggling with fatigue (like walking through treacle) and feeling generally very unwell much of the time (different from the RA unwellness). My RA isn't brilliantly controlled at the moment so I wasn't sure if it was the meth or the inflammation causing the fatigue but I have noticed it much more as the meth dose has increased so I think it may well be the meth.

    I will be very interested to hear whether things improve for you on injected meth as they have done for Lizzie. Really hope so.

    Tilly xxx
  • mummyb
    mummyb Member Posts: 1,231
    edited 30. Nov -1, 00:00
    Hi guys, WOW what a fantastic response, thank you so much to everyone that replied. It somehow feels better to know that others have the same experience on the mtx. It also reminds me that everyone's experience is a bit different to other people's and I guess that some tolerate it better than others. The feeling of unwellness is a bonus I can do without as I still have to work full time. I'm looking forward to getting the call regarding the injections and hope they have the positive response that they have for others, then hopefully, I can have my weekends back. As I was off work on leave yesterday, I decided to try a bit of an experiment and took my mtx on the morning instead of the evening. By lunchtime the fatigue had kicked in and by 3pm I was out for the count until 8 ish then back to sleep again at 11 until now (4 am ish).

    Thanks again to old friends and new for taking the time to respond, its good to be back amongst friends and people who understand how it feels to be lumbered with Arthur.

    Hope you all have a good weekend, lots of love and hugs, Brenda xxxxx :grin:
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Brenda,

    Really nice to see you! Hope your okish except for the tiredness thing?

    I am wished beyond wished the day after I take the mtx and have been ever since I went to 12.5. i start the jabs for other reasons this week but fingered they would be the same for the wishedness so good to read your told it might be better :wink:

    Hope the appointment comes through for you soon flower and really is nice to see you.leaving a (((( )))) and a hope you will get the appointment this week. Cris xx
  • mummyb
    mummyb Member Posts: 1,231
    edited 30. Nov -1, 00:00
    Hi Cris, how lovely to hear from you, hope you are keeping as well as you can be at the mo and that all your girls are being kind to you.xx I'll be interested to hear how you get on with the injections. My rheumy nurse did say that they should ease all the side effects of the mtx, mine being the tired/sleepyness. I went to bed on Friday afternoon at 3pm and didn't wake up properly again until 5pm Saturday, I think I may have been half awake for 3 to 4 periods of an hour or so during that time, its crazy I feel like I'm sleeping my life away, but the alternative is the vast amount of pain I was in before mtx so I guess this is the better of two evils. Anyway Cris, I guess its watch this space for both of us. Lots of love and hugs to you (((((())))), Brenda xxxx

    Hi Lynn, it certainly sounds like changing to the injections has worked for you, I found your reply so encouraging, so a big thank you. I'll let you know how I get on with it when my appointment comes through. Love and hugs, Brenda xxxx
  • frogmorton
    frogmorton Member Posts: 29,792
    edited 30. Nov -1, 00:00
    Brenda

    I think decison made there! Isn't it lovely to have you back? Hope it works and you can actually wake up a bit and NOT be in agony.

    Love

    toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Brenda,

    Tis a lot of sleep that one.... I find I am wished most the time now a days but the day after the mtx I seem to find the arm chair wins more..... never that much though it might if I went to bed and tis good to know the jabs might stop some of the sleeping then? I having them cus the tablets have stuffed the stomach lining or what was left of it at any rate.

    Good to see you about even that early in the morning. Hope you have been doing okish there? leaving another ((( ))) and a hope. Cris xx
  • alarkra
    alarkra Member Posts: 213
    edited 30. Nov -1, 00:00
    Hi Brenda,

    Sorry to hear you are having a rough time on the mtx at the moment. :sad:

    I was on 20mg of mtx pills for 6 months and found that I wasn't too bad on them to start with, but around 4 months in I started getting terrible nausea and was getting wiped out (sounds similar to what you are going through). After seeing my consultant he put me on injectable mtx at 20mg. I'm on week 5 of trying this. I always feel groggy the day after taking it no matter which form I use. Sadly, I am struggling with the injectable mtx as it's fine on the day, but it's 24 hours later the side effects kick in, making me physically sick and feeling utterly bleugh... :cry: I am taking folic acid 6 days a week (not on the day I inject), so it is helping the sickness subside, but I still feel rotten. I'm riding it out to see if after a couple more weeks I'll be used to it. I do hope that you find that injectables work for you as it is more potent so maybe it'll be more of a boost for you rather than a wipe out. I wish you well! xx
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hi Brenda

    I'm on Mtx injections (15 mgs) too and overall find them MUCH MUCH better than the tablets.. but, I too am very tired the day after I do the injection .. I do my injection on a Monday night, and make sure I have an 'easy' day on Tuesdays .. by Wednesday I am OK again..

    Best of luck with the injections..

    Marion
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Brenda,

    Had the first mtx jab today... i am lucky, not scared of needles and had a lot of injection practice so for me it was easy.

    have felt very tired but then I don't sleep so good just now but no headache, no sickness and no stomach pain beyond the constant that i now seem to have... much, much, much better :grin:

    They put me on 20 ml, was on 25 tablets but they hope the jabs will work better as you get a better hit.

    Fingers crossed for you flower and it really is nice to see you again :grin: (((( )))) and a hope. Cris xx
  • donnas
    donnas Member Posts: 119
    edited 30. Nov -1, 00:00
    Aha! I thought I'd seen a thread about this.

    I am now four weeks into my treatment with MTX and am EXHAUSTED. All the time. I am a terrible sleeper, and it's not making me sleep more but I'm just even sleepier when awake and have no motivation to do anything most of the time, as I fear I'll nod off. I've had the long weekend off work and have had naps each day. they help at the time, but I feel like I'm lying down for life!

    I should mention this to my GP, eh? Is it time for my pre lunch nap now?
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Evening Donna!

    Sorry you are struggling so much with tiredness. I know exactly what you mean - I call it my "walking through treacle" when it's really bad and I think it's hard to know sometimes what's causing it - the arthritis itself or the mtx. Presumably your blood test results are ok and there is no indication of anaemia? I'm on 20mg mtx weekly and, although I am still needing to rely on steroids too to manage the RA, I have to say that my fatigue has not been anything like so bad over the past few weeks so I reckon it's not just the mtx to blame in my case.

    Anyhoo, I reckon it would be worth mentioning it when you see the doc and keeping an eye on the blood test results.

    Thinking of you.

    Love Tilly xxx
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    i know this is an old post, but thought id bump it. Im having awful problems with tiredness. the first week it was the first 4 days i felt totally wiped out. Now im feeling wiped out all the time really. I slept all afternoon and still feel absolutely awful. I take MXT thursdays and sleep all weekend. im onl on 7.5mg oral at the mo. and meant to be incresing it this week! eeek
  • arfaitis
    arfaitis Member Posts: 155
    edited 30. Nov -1, 00:00
    I have been on MTX for 13 years now, and I take just 7.5 mg. now which is a low dose. But the day I take it {mornings} sometimes I get tired and nap now and then, and can't sleep at night. But some days I can sleep day and night, and sometimes I can't sleep at all.
    It really messes me about.

    Arfa
  • DebraKelly
    DebraKelly Member Posts: 398
    edited 30. Nov -1, 00:00
    I started on Meth tablets and switched to Meth injections in January.

    I made the mistake of taking the Meth injections first thing in the morning to begin with I found I had no energy for the rest of the day. I now take them at night just before I go to bed and because I go to sleep straight away I don't really notice the tiredness the next day.

    But I think tiredness is just part and parcle of having RA!
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    i dont have RA. the tiredness is defo the methotrexate. maybe i should try taking it at night too. it just totally wipes me out. not feeling quite so bad today though. Do u think injections would cause less tiredness? I dont think hed let me switch though.