Oh no - here we go again!

I'm feeling sick again. But it's not that. It's the fact that I'm constantly out of sorts,very low in energy, no appetite, a horrible taste in my mouth and a feeling like I've swallowed a golf ball. I can't really explain but I have a sort of generalised stiffness and vague ache, especially in my lower back. I was sick all day on Monday and since then I've returned to the general malaise although don't feel like I'm going to be sick anymore - but all I'm good for is lying down - even sitting in chairs wears me out and makes me uncomfortable?

I know you've all done your best to advise me already. My GP thought it was unlikely that I'd go from feeling fine (well with just a day or two of feeling wabbit) on 15mg to a whole new nausea thing from increasing my dose by one MTX pill. So I thought it must have been overdoing things with all my singing, or a tummy virus etc.

But I still feel crap and can't hack much more of it to be honest. I am normally pretty energetic and optimistic even when in pain - which I'm not currently - just weird discomfort somewhere between my tummy and my lower back and my chest? So am starting to worry. Could this be MTX on it's own, MTX combined with Hydroxy, nothing to do with either of them as my GP implied? Or could it all be psychological, or could this possibly be active RA even though my joints don't feel pained or swollen - just stiff and achy? I am so confused.

Our car comes back home on the ferry on Saturday morning and we are booked to travel down to Edinburgh in the afternoon - staying in the flat four flights up with no lift. At the moment I can't imagine climbing even one flight my energy levels are so low. I'm really stiff and sluggish and feel this vague crushing sensation on my chest. It''s been a beautiful sunny afternoon and normally, if I was remotely pain free like this I'd be springing around walking the dog over the hill and generally bustling about. But my body feels heavy and bloated and uncomfortable all the time from waking until bed time. Your thoughts?!

26 Replies

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  • Hi Tilda, sorry your feeling rubbish at the minute.

    I can only speak of my own experience and I must disagree with your GP. I'd been taking MTX for 4 yr without to many problems then all of a sudden started vomiting the tablets back within minutes of taking them. I went from being pretty happy go lucky to a miserable wreck.

    My consultant stopped them when he saw how ill I'd became, he told me to have 6mths break then started me on Leflunomide. I've had my moment's on these but they do keep my spine, SI joints and hips under control.

    I'd advise you speak to your consultants team about how your feeling.

    Hope you feel better soon.

    Beth xx

  • Thanks so much Beth. This means a lot to me because I confess I've been starting to really worry about what on earth could be happening to me. I have felt pretty robust about RA and the drugs on the whole so I don't think it's down to any fear or dread of them. Just that, exactly as you describe - as soon as I take them I feel very sick in the out of my stomach and now it's not just sickness but fatigue and a general unwellness that is hard to pinpoint. So to learn that it was sudden for you too is rather a relief as I can now go to sleep knowing I'm not going mad and probably haven't acquired some new and equally horrible disease along the way either! Take care and sleep well.

    Tilda xx

  • Well I've gone from taking the same dose of MTX for ages without any problems to having a mouth full of sores in the space of a day or so. So things can change v quick.

    But I'm wondering whether you are starting to suffer from panic attacks? They can be horribly variable in the way they show themselves. I remember you had a very different stress reaction a little while ago when you were worried about palpitations. And wasn't that just before you had to travel down south? Just a thought, but is maybe your body trying to tell you something about how it wants to stay at home with its feet up? And subconsciously you are worrying about the holiday travel? Px

  • Hi Polly - thanks and yes you could be right and if you are then I would actually be relieved - but at present it feels a bit sinister to be feling this sluggish and unwell. I've just made a locum apt and am going to ask for my ESR to be taken today (last taken a month ago came back at 50) because I think, if it's lower as I hope it it will be, that would encourage me to soldier on with the MTX at the raised dose. The practice nurse and my GP were booked up so I could only see the locum who thinks MTX is poisoning me!

    I told the rheumy I would try it and one of the outcomes seems to be that my ankle tendon - which was making me hobble with pain before, now seems much better and my hands feel less tight. If I can weigh it up then I won't feel so panicky about the MTX. I took a Buccastem last thing last night and have woken feeling a bit less awful after sleeping like a log. I don't think I'm dreading Edinburgh but I just want to summon my usual energy levels back for it that's all! Mind you the prospect of staying at home isn't good with all the young here - its noisy and messy and there are lots of shouting matches going on between oldest son and OH so home isn't too restful currently! TTxx

  • Hi T

    I think its the mtx. You get days when you feel yuk, for no reason. Its a hard drug to tolerate as its basically a poison to our bodies - I know it a contradiction as it does help, but I think every now again I body says no to it despite its benefits to ra.

    When they tried to move me to 25mg despite my blood work being good, I did not like it. My mouth became dry, also my hair, I felt out of sorts. Decided I had exceeded my tolerance of the drug and had to fight to get it reduced (actually I refused to take it, much to the annoyance of the consultant. But they don't take it, and despite on paper it says I tolerate it well i don't think I do and that what counts). Maybe you have reached your personal tolerance of the drug also? If you can't take any more than 17.5 combine it with lef, some on here do that also, its worth a try???

    I hope you malaise does not last long. I must say you get less malaise on injectable and you get the same affect on a lower dose, as via injection your body absorbs all of the drug! Just a thought!

    Hope you feel better soon Jx

  • Thanks Joanne - I know that I want to try the injectable but the GPs aren't having it so I'll have to work on my rheumy when I see him at the end of the month (hopefully - no apt date yet?). I think it is the MTX and I think my GP just doesn't realise how it can be tollerated okay up to a point and then it can start poisoning us. The weird thing is that the spots that have adorned my face since I started taking it have gone away now - give me them over sickness any day! TTx

  • Sending ((((((hugs))))))

    It horrible feeling being nauseated or sick. Hope the feeling passes soon :)

  • Sorry, I don't have anything to add Tilda. I just wanted to say that you have had such a tough time recently and I hope that you get this sorted, start to feel better and enjoy your holiday in Edinburgh x

  • Thanks Sci and Carole. I just hit lucky as went down to town to see the locum from NZ. What a sweetie he is! He said he was sorry I still wasn't up to much and I explained with complete honesty what I wanted of him - my ESR - and he agreed it might help me soldier on with MTX whether too high or much lower (here's hoping the latter!) and took blood with no fuss. He got in a tangle with the plaster - being a bit of a cack handed old thing like my late dad bless - and it immediately fell off so I had to walk to the pharmacy with my finger on it to stop blood getting all over my shirt! Got my next lot of Hydroxy and will phone for ESR results later today. Feeling much better for running my own health care plan again if that doesn't sound too nuts - but still off food and a bit lack-lustre on the energy front.

    He explained how he and his wife (who is the other locum - a lovely woman and great dr) come over every year and stay in a caravan for June and July here and work full pelt. They love Orkney and get well paid as locums here - and then go on and see their kids and grandkids who are scattered across the UK. What a brilliant way to operate eh?! Hoping the Cimzia isn't making you feel too awful either Sci. TTx

  • Hello Tilda

    I am so very sorry you are feeling so dreadful and, based on my own experience of meth I would not be at all surprised if much of how you are feeling is down to the meth. I know too that,, when you feel so rough and you start to worry, the panic really can set in and that just makes things worse than ever.

    I have taken meth twice in the past 16 or so years - for a year or more each time and I have just not been able to tolerate it at all - even at low doses and I found that increasing the dose at all just made things much worse. I completely understand your desperation but what I would say is please don't go on struggling like you are for too much longer because, as I have found, there are many, other meds available and you could just find a combination of DMARDS which helps you without the horrible, unmangeable side effects. When I stopped meth first time round, after about a year and a half, it had really been helping my joints and I was very worried about "what next". But, with the rheumatologist's help and some trial and error, I eventually found other combinations of DMARDS which helped me (maybe not as much as the meth) but without the side effects. Leflunomide really didn't suit me but other than that I had no problems with any of the others. I know meth is the "drug of choice" these days but it really doesn't suit everybody so please don't feel you have to struggle on - there are other options.

    Thinking of you Tilda (and, in answer to your question on your other post - I am not a Matilida - I just picked Tilly as a user name - I really wish I was a Matilda or a Tilly cos it's such a lovely name!)

    Thinking of you.

    Tillyx

  • Thanks Tilly - you can be an honorary Matilda then!

    I'll hopefully be seeing my rheumy later on this month and be able to ask him to help me overcome this horrible post MTX malaise. It did seem strange that I managed fine on the 15mg and then even tolerated the rise to 17.5 first time round in April - but this time have been so sick with it. But now I learn from Beth and Polly that this drug can be fine for a while and then suddenly change it's impact on us unexpectedly so I'm more reconciled I suppose - as long as it's not something sinister in addition to RA I feel a lot better about it.

    I really don't want to be non-compliant over the medication as don't want to alienate myself from my scant and rarely seen rheumy team - but equally I can't cope with feeling this ill all the time. I know that all these drugs have side-effects to a greater or lesser extent and as long as they are not the ones that endanger us then I'm prepared to put up with most of them. I have put up with having itchy spots on my face after each weekly dose and also with tiredness and weekly mood swings. But feeling, nauseous, ill and tired all the time seems to defeat the object of the exercise - i.e to have things improve overall.

    So we will see what happens next. If I find my ESR has come down later today, as it should have as I'm in very little pain just now, then I might well soldier on until the end of the month when I see my consultant and get x-rays taken. We will see! TTx

  • Hi Tilda, so sorry you're feeling crap, you are the one who advice or sees things from another view,( which gives me something to think about). I've been on Methotrexate twice, but had to come off it as was raising the creatine levels so high that I could have renal failure (which I had in Sept 2009) I dont remember having the side effect you have, maybe I wasn't on them long enough....I don't know. I hope you get it sorted p d q, sending you loads of hugs. Take care Ann x

  • Just to add something else to the mix, have they run any other tests to make sure it's not completely unrelated? It could be something as simple as gastric/intestinal ulcers (which can be aggravated no end by medication), which need some attention. I suppose I'm just tossing this in to make sure every avenue is explored, because the tendency is to attribute everything to a chronic illness, and it may not always be that.

    Hope you're feeling better soon, though - this must be making you feel really low. :(

    Sara xx

  • PS I've not been taking any Aspirin or NSAIDs or any other pain killers that might have caused ulcers or gastro-intestinal bleeds so think that makes this unlikely? I heard a programme about this the other day on Radio 4 so know what the signs are now!

  • Hi Tilda, Sara,

    I was thinking the same as Sara, I had a stomach ulcer years before RA and all it's meds; called Helicobacter pylori, some sort of infection in stomach that immune system can't fight (even in someone with a 'normal' immune system) was treated with anti-bioics and felt waves of sickness, pain and fatigue with it, I never felt what I thought was ulcer pain but after simple blood test, there it was!!

    xx

  • Thanks Sooty and Parkie - yes this is exactly what I've been wondering too. I'm feeling a bit better today (still no appetite but not as sick or as bloated and heavy) and I've just found out that my ESR has dropped to 34 from 50 a month ago and from 62 six weeks ago which is great news as it makes me feel that going through all this is worthwhile if the higher dose of MTX is lowering the inflammation. How sad am I?!

    It has been making me feel really low I admit because I've got a lot on work-wise just now (as a self employed artist) and a full house and the summer holls ahead of us and I want to be my normal springy self. If it was joint pain that was holding me back a bit that would be one thing (I've got a very high pain threshold and really am not that bothered unless it;s scream-worthy) but to be feeling ill all the time is another and I hate it with a vengeance! So if it carries on I will push my GP to take other tests and look at other possibilities as they are all now apt to just pass it off as RA or the meds I agree. Tilda xx

  • They can test for H.Pylori with a breath test, I think, so hopefully it'll be simple and non-invasive, if you do end up going for the test.

    Good luck, Tilda - you don't deserve this as well as the RA pain!

    Sara xx

  • Oh - not sure I could face being tested for smelly breath by my GP Sooty?! But I've had a good weekend followed by 3 days of being relatively well again. MTX night tonight dread dread. I have noticed that I feel queasy for a few hours after taking the Hydroxichloraquine (with food at lunchtime) which has made me wonder if it isn't just the combination of these two meds with the MTX at the raised dosage now. TTx

  • Hope you feel better soon and get some answers it is a worry and obviously you need this sorted xx

  • Thanks Summer - I've just been for a stunning walk with dog in the beautiful sunshine - it's still hot out there at 9pm. I feel much better today (MTX wearing off a bit I guess?) and back on track now I've learned that my ESR has come down so much (from 50 to 34) since the dose was raised. TTx

  • Hello Tilda, i am late again as usual but i am glad you feel a bit better today and that walk sounds beautiful. Is there anyway that you could stay on metx15mg and then add another dmard in like plaquenil - not sure how that would work.

    But it is a bit ridiculous that you feel so bad for so long each week.

  • Hi Mads - I'm taking Plaquenil already. I will keep taking 17.5 MTX until I see the rheumy at the end of this month and then tell him I either move back down or take it by injection. But if my ESR stays down and disease activity is down then I would really rather stay at this dose if I can because it seems to have resolved the pain in my ankle at least.

    We arrived in Edinburgh at 1am after a boat journey and a 5 hour drive yesterday. My eldest son has texted to say he got in from his shift to find loads if young in our house and middle son (17) drunk and drink spilled on the carpet. Hey Ho! Tilda Xcode

  • Oh the perils of youth Tilda, good job your eldest is at home to sort it all out and the carpet will be clean and everything will be as good as new when you get back.

    This is the second time i have read about alcohol and carpets this morning.

  • Hi Tilda, nothing to add to all the advice here but just wanted to wish you well. Glad to hear about your ESR. I envy the sunshine - I was in Shetland this time last year, doing 'living history' on a Viking boat - I remember the beautiful evenings well and have airbrushed out the wet and foggy ones!

    Hope you feel better soon,

    Christina x

  • Hello Tilda, I just wanted to say how much I sympathise with you. I was quite happily going along on 20mg of MTX for about a year until I started to feel really sick, tired etc etc all the time for about 3 months. I got put onto weekly injections of 20mg MTX which I take along with 10mg pred daily, arcoxia and zapain. It only took about 3 or 4 weeks to have no reaction at all from the MTX apart from falling asleep on the day I take it! Please do keep on pressing your GP and/or rheumy to get you on the jabs as they may well be incredibly successful for you, too. As I say, apart from tiredness on the day I take it, the MTX now has no other side effects which bother me at all. Good luck, and keep nagging!

    Xx

    Virge

  • Opops, i forgot 5mg folic.acid on 6 daiys xx virge

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