Down - Methotrexate?
edited 4. Apr 2012, 17:47 in Living with Arthritis archive
Hi All - not been around for sometime - mainly because the methotrexate (15mgs) seems to be working well on joints so I haven't had much to moan about. And yet ... I feel incredibly down on and off and don't know why? My OH is away at the opposite end of the UK with his father who is on paliative care and will probably go at anytime so that isn't helping but I don't think it accounts for this black pit feeling. So what I want to know is does Methotrexate make others feel depressed? I take it and get no hair loss or mouth ulcers or sickness - just terribly tired and low. I'm not prone to depression at all and usually manage to scratch myself back out but each week seems to make it worse. I'm starting to wonder if the RA has gone away and perhaps I could just come off the MTX. How will I ever know if it's gone? I have no rheumy apt coming up so just my GP to ask and he's not a man to invite talk of depression - and I certainly don't want more tablets so I wondered if anyone here has any experience of complete remission from RA? I do have residual ache in most of my joints but it's very low level and could equally be down to menopause or thyroid or Vit D deficiency (I've never been tested). ESR was at 40 6 weeks ago - and 3 weeks ago was down to 26 - CRP almost normal (11). I don't think I can bear to go on feeling this low every week it's horrible. Mat
I'm only one person Mat but I've been on meth for over 10 years and never felt it was making me depressed. Arthritis now - well, that's different :roll:
I'm no doc but might it be partly your father-in-law's situation, your consequently absent husband and maybe even the fact that things are a bit better on the arthritis front. I know that sounds odd but you are still relatively new to all this and maybe, now that things are a little easier, you have the mental energy to realise how difficult things have been and are regretting what you've had to leave behind?
As for remissions - yes, they do come occasionally, though only in the early years for me. It might be spontaneous but is far more likely to be the result of the meth. My own advice would be to stick with the meth and not risk a flare. I'd also suggest you ring the Helplines who would be able to give you a more rounded picture. Take care.0
Lupin25 Member Posts: 35Hi Mat, I asked the same question a while ago..... i'm convinced the mtx makes me feel down - like a black cloud over me. I have aslo had a lot going on in the last year, both physicaly and emotionally, but I still think its the mtx!
As for coming off it I did & was off it for about 9 months, still having niggles but coping, and then bam..... mega mega flare up that took some getting under control. Its down to you but I would advise to " keep taking the pills ".0
Thanks SW and Lupin - I've never really admitted to feeling depressed to anyone before - far too proud to risk sobbing to friends and the teen boys wouldn't know what to say if I let on so grateful to be able to let it go on here at least. Your experience make me think I'm right about the MTX at least Lupin although it doesn't say anything in the written blurb. I get really manic on steroids as well so maybe just one of those people for whom drugs have this effect?
Certainly can't tell my hubby who is going through enough just now. I don't think this wave of depression is because his dad's dying because he wasn't close to his father at all and I certainly wasn't. I'm just trying to hold the fort at home and be brave and support him at a distance.
When I say not in any joint pain I really do mean it - I can do all the stuff I had been struggling with before and more and the only sore stuff now is residual and it doesn't even feel like RA as I've experienced it - more like getting older, a bit of wear and tear on ankles and sore shoulders and wrists - not the acid pain of the last year. I haven't had any real pain since beginning of February. Was it not worth coming off just to find out that you do really need it Lupin?
That's a good idea though I'll phone the helpline if I'm still thinking along these lines next week. The depression could be delayed reaction to losing my own parents suddenly within the last 8 years - maybe my father-in-law has triggered some bad memories for me? But I feel that it's more chemical than that somehow because it happens every week along with the tiredness the day after my MTX dose a big black cloud sucking me in - and then in second half of the week I seem to pull myself out of it again. I don't want to be taking it if I don't actually need it any more that's all but if the pain came back I'd go back on it but I'll maybe ask my GP when I see him in ten days time. Thanks anyway. TTx0
Tiredness the day after meth, or the day after that, is something I do sometimes get. I wonder if that is a contributary factor to your feelings of depression.
Sometimes people do come off meth because they feel OK but they then seem to talk of flares & going back on.0
suzygirl Member Posts: 2,005Hi Mat, i am not on meth, but do suffer from arfur. I find the relentness of it can drag you down. That and the fact that life doesn't stop. You are struggling with a difficult family situation.
Sometimes, I find I rise to the challenge of a flare, but then struggle when it subsides. It may just be that things are hitting you now.
Talk to frineds who understand and do your favourite comforting tricks. I wish you well.0
Thanks Suzygirl. Haven't had a flare since early Feb so starting to feel like it was all a bad dream. You maybe right and perhaps the low level aches are really the RA just being kept at bay very well by the MTX. Will ask my GP first when I see him in ten days because I don't want to be stupid and just stop taking it without consulting anyone. But if I flared again then I would at least know I needed the MTX and stop being in denial as I am a lot of the time now. I would also have a better sense of whether the MTX is making me depressed for a few days each week (and getting worse each time too) or whether the depression is to do with me or the RA perhaps in which case I might consider anti-depressants as I find I'm not coping well at all like this.
I think the doubt and wondering if it might all just spontaneously have gone into remission is unhinging me a little so I need some kind of clarity about whether I have RA or not. If I had been x-rayed or seen images of swelling on an ultrasound ever or had a longer consultation with rheumy back in November then that would have been different. If I'd been seen earlier this month as I was meant to be (but was passed over for a backlog) then I would feel more confident that he had diagnosed me correctly but it all felt very rushed somehow and now he's not been in touch with my GP and I feel left sort of high and dry if you know what I mean? I won't mind taking the MTX if I know I need it for sure though. I can handle pain pretty well but just not the ensuing damage or being nibbled at slowly but surely so I won't drop the med without my GPs agreement. Mat x0
joanne66 Member Posts: 25Hi Mat48,
it sounds like you need 'evidence' of Arthur, it is hard to accept we have it....i'd like to tell you my experience,
i have RA started 2 years ago, (21st march to be precise, came on very quick) diagnosed september 2010 started on hydroxychloroquine, february 2011 rang helpline,(still in pain) started on mtx too, took aprox 6-8 weeks to get in my system, but worked great.... but then started getting blemishes on my face , put it down to the mtx. went on hols in sept 2011 for a wedding, drank some alcohol, and had a high liver count when i retuned home, so told to stop mtx for two weeks...i decided to stop for longer as i felt great. that feeling lasted a while(a month or so), but the pains did come back , i went back on mtx but again took 6-8 weeks to take affect, this was Christmas time, (good job i didnt have to cook) i felt rubbish, back to how i first felt, pain in most joints ,no energy, depressed, almost no bladder control!
i'm on 10mg of mtx and yes i get headaches,and feel a little unwell but i can walk, get up out of the chair in one go,turn door handles, open bottles, generally feel almost 'normal' which is great!
it sounds like you need to see for yourself if arthur is still there, but with your family issues i would 'pick' the time to stop mtx wisely.
Thanks Jo that's incredibly helpful. You guys have given me some more perspective. Woken this morning feeling positive again which seems to be my weekly cycle now. If I felt more sure that this was RA and hadn't gone into spontaneous remission then is put up with a couple of days in a dark cloud but I'm more convinced this is a side effect of the MTX than ever and need proof that it's worth it - which I'll only have if I stop taking it for a while I feel. But it is only 2 days per week that I'm tearful and low and exhausted and it is the only side effect I suffer so I will choose my time with care and explain to my GP what I'm doing and when and why first. you have all been so helpful thank-you. X0
PS - yes I have blemishes too! little spots in pairs like bites that never go properly? Not going to worry about them but the tiredness and depression aren't so easily dismissed.0
dreamdaisy Member Posts: 31,520Are you taking FA? That is meant to ease potential side effects but I think it's more the circumstances and the feeling better that is pulling you down. I appreciate the 'feeling better' days but as I know what the outcome will inevitably be they are rather depressing. DD0
I'm glad you're feeling a bit better today, Mat. I wonder if it'd be possible to pre-arrange some little treat or other for the days you expect to feel bad. It might just help a little.0
barbara12 Member Posts: 21,280Hi Mat
Sorry I cant offer any advice about your meds, but like one of the others have said the depression may be a combination of things, I do hope you will go and see your GP, I know they dont always have time to listen but its worth a go.
And I really do wish you well with everything , and dont forget we are always here to listen
You take care x0
kathe Member Posts: 183Sorry to her you feeling down whit methotraxte. For me it is the said effects thats the big problem. I get dizzy, sick, and really bad the day i take it and it`s youst getting wors each week. I also feeling a bitt down the day I take it. I take folic acid every day of the week , but not the day I take the metotrexate...0
Thanks all. Just back from a lovely walk in sunshine diffused with a sea mist with dig and youngest son (15). Strange as this may sound I talked it through with him and he agreed that I seem especially low for a few days each week after taking the MTX. I really only want to be a bit scientific about this so will wait for a few months and see how low I can get my inflammatory markers and let them settle - and also wait until weathers milder and things have passed re my Father in law. Don't think my low is about him as we never got on and he was a lousy dad to my OH so no sadness there beyond not wishing this kind of painful and protracted death on anyone and feeling horrible for my hubby who is having to go through all this 1000 miles away from me sJo I'm having to hold the fort with teens and dog at home and support him on phone whenever he calls.
On the very plus side depression has lifted and at least RA has stayed away because I know stress brings it on. 13% of people with RA do go into spontaneous remission. I'll wait out until I've spoken to GP and maybe seen a rheumy (never know my luck?!) and then come off it very scientifically but not if RA reveals itself once again or if they give me some proof that the disease is still active - never been offered ultrasound or x-rays of joints yet. Thanks for all your advice I'm minding it and will take the MTX this coming week and watch out for mood swings etc again end of next week.
Yes I take FA for 3 days not including the MTX day. I could try taking it daily I guess? I elected to take more than one a week
But GP just shrugged and said ok so might need to clear the additional 3 per week as at that dose it's prescription only?
I just wanted to sympathise. You do have a lot going on at the moment and I am sorry. I did goodle metho and depression and whether it will help at all or not, it would appear that you are not alone in the symptoms you are experiencing.
This is one of the links, there were more.
It isn’t usual to take Folic Acid on the same day as your meth. I think this is simply because it might reduce the beneficial effect of the meth but I guess it’s just about possible that it mightn’t be helping your mood.
I was told which days to take my F.A. when I started on meth. Were you? It just seems a bit odd. Might be worth checking about a possible change of day(s) for the F.A.0
Thanks so much Ella - word for word that could be me and it's certainly made me feel much less alone. No I wasn't told which days to take my FA but just to take one a few days after the MTX day. I read a lot and decided that if FA might help prevent symptoms such as hairloss and nausea etc I would up my dose to 3 a week which is what I do now. Perhaps I should take one the day after MTX and it might lessen the depression which only comes on about 48 hours afterwards? I will try it this week and let you know if it makes a difference - here's hoping! Mat x
Ps or if you meant that perhaps the FA could be causing the depression I don't think so SW because I wake up to it on Fridays and don't take FA until after breakfast usually?0
I am happy for you if it has helped you to not feel so alone and sort yourself out more with this symptom. That sounds a bit weird saying that but I think you know what I mean. On further googling with only putting in the words methotrexate and depression I was astounded how many people were in the same, similar boat as you. At least you know it is more than likely the metho and can take if from there with your medic if you wish. I do not remember people posting/linking this awful side effect with metho on here but it most definitely appears to be one.
Thanks Elna - yes my chin is most definitely up! I've never heard of this either but suspect I'm not good with powerful drugs as they tend to give me mood swings - even more so with Prednisolone which does have it listed as a common side effect. I will tell my GP but am going to try raising the folic acid this week and see if it helps. Strangely my wrists are both aching today so this is just enough of a reminder of what has been to tell me that it wasn't all just a nightmare and if I stop taking the MTX it could easily all just come roaring back so I really won't do anything stupid. Thank-you again for the link it really has helped knowing i'm not just imagining this side effect. Mat x0
Just felt I should update you all having had so much supportive advice. I saw a GP (not my usual) who advised me to come slowly off the MTX one pill at a time because of the plummeting moods. Then I asked the head physio who was with me at my first consultation if she could ask my rheumy what i should do because low level pains have been worsening a little each day and my ankles and wrists are now quite tender (like sprains) and my ESR has risen to 50 now. Rheumy conveyed message back that he didn't think MTX was cause of the depression and that I would get even more low if I dropped MTX and then flared up.
To cut a long story short my GP says he thinks it's unlikely that the Methotrexate would give me these intense bouts of depression although possible. He thinks it's about coming to terms with having RA. He is trying to organise a tele-med consultation for me with my consultant but failing that he will hopefully get advice about what to do re my medication - whether to increase the MTX or add in another DMARD perhaps. He is concerned that I should have been seen and had the MTX reviewed etc by now and there's nothing on the horizon - not until end of May anyhow. With raised ESR and symptoms returning and worsening a little daily he thinks the disease is still active and I need more medication. He gave me a cognitive therapy site to look at re depression. I've looked and listened but it's not doing much for me so far and is driving OH nuts!
I’m sorry things are no easier for you. Of course I can’t say whether or not meth can cause depression. It hasn’t done for me and I don’t think I’ve heard people on here saying it did for them though, of course, a lot of folk are going to be (a)on meth and (b)depressed because we certainly know arthritis causes depression. You are still fairly new to all this and it makes perfect sense to me that, having so much to come to terms with, alongside the pain, might easily make anyone depressed. There are a lot of depressed people on these forums but I think the common denominator is arthritis not meth.
As for taking another med alongside the meth – I was started on hydroxychloroquine and I think they’re a fairly standard combination.
Cognitive therapy? Sorry, can’t help but I do hope it helps you.0
Thanks SW. The cognitive therapy is a site for people referred by their practitioners with depression. It seems to involve a course and a man/ doctor with a very soft voice speaking about how to get hold of the self help books?! No mention of people suffering from chronic pain mind you.
So I'm still struggling with the blues but I've worked out that it stems from extreme tiredness and that is definitely going hand in hand with both the drug and the RA. When the weather is good enough I get out for exercise and fresh air as I did today, but then came home wiped out with terrible headache and fatigue and now can hardly keep eyes open despite having slept most of the afternoon.
Also I find constant low level pain very wearing - almost prefer it when the pain is proper adrenalin pumping stuff - this is more like toothache and I can never quite be sure that I'm not imagining it if that makes any sense? Got quite close to making an appointment to see a private rheumy I was recommended in London, 800 miles away from where I live, just as a one off to get the ball moving again re my meds. But I can't really afford this option and am also worried I will upset my existing rheumy who seems very good if only he would see me - as well as possibly alienating my GP.
Or equally that they might think "oh goody she's gone off elsewhere so let's give her slot to a more needy patient" and that would be truly awful so will just have to hope I get reviewed by rheumy somehow very soon. Hope you're well? Mat x0
Sorry to hear you are feeling so down, I think there is something in the comment that you are still coming to terms with having RA. It does hit you especially when you think things are improving and then you get a knock back. We all try, (and why shouldn’t we) to go back to old way of doing things only to find things are not the same at all. You have had a rough time with your hubby being away and it must feel everything is changing at the moment.
I feel so tired two days after taking mtx, but I am in a better place now that I have finished work so I can plan to have a rest day when I need too. You are right that low level background pain is very wearing.
I know it is hard Mat, but I do hope that you find some pointers from the telephone consultation and it will be of help to you. You can only give it a try and then make some decisions when you feel in a better place.
Hi I - yes it's been a heavy few weeks with my husband away and coping with his dad's death and funeral without me there for support. Also he's definitely the domestic god of the two of us and I wasn't getting my daily work outs because 2 teenagers and a dog seemed to take up so much time! But he's back now (on antibiotics with an infected, fractured toe!) so no excuse not to stick chin back up now.
Relieved to learn it's not just me with the post MTX exhaustion although of course I don't wish any added burdens for others on top of the arther. Wednesdays represent an afternoon crashed out, Thursdays are the same plus gloom and Fridays are the days from hell when I feel like the bottom has fallen out of my world. At least that leaves the weekends relatively free of trouble though! Hoping very much that this extreme tiredness will wear off in time as otherwise I am very good with MTX.
But GP mentioned re-introducing a low dose of Sulphasalazine which I tried last year and had a bad reaction to - I really hated it so even at a low dose my heart sank when he said this. It's quite a thought starting another drug possibly - with so little contact with any rheumy expertese as well. I actually think I'd prefer to weather the MTX side effect of exhaustion and go up a few more tablets - better the devil I know somehow?! Mat x0
Yes Monday is a bit hit and miss with me but Tuesdays are my crash days. I started on Hydroxy and although it did take forever to get working it was a mild med and I had no trouble with it. I was offered Sulfa at my first hospital but they lost all my records before I could start it so went to a different hospital by which time I had lost my nerve and only after a lot of dithering did I agree to try Hydroxy. Look at me now taking 17.5mg mtx like a little lamb!
I have found that the mtx has settled down with time, I did take the increases very slowly though but that was just me. There does not seem a hard or fast rule with these things.
It sounds as if both you and hubby are rundown at the moment, I hope his toe improves soon.
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