feeling terrible

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stellabean
stellabean Member Posts: 307
edited 19. May 2019, 02:02 in Living with arthritis
Been on slowly increasing doses of methotrexate for past few months reached 12.5mg last Monday and was due to increase to 15mg this Monday.But have been feeling dreadful since early hours of Tuesday.
Woke at 3am with really bad nausea far worse to that I have experienced before but no vomiting.over 8 visits tot he loo.
Felt nauseous most of the day.Had a disturbed night on Tuesday waking feeling sick and making loo visits again over 8.Felt unwell yesterday and managed to get hold of rhumey nurse after 2 days of trying.
I am to reduce methotrexate down to 10 and reduce my folic acid down to 1 ( as my consultant doesn't like you taking more than 1.It was prescribed by the other consultant in the department)
Last night I was awake most of the night with nausea so bad I came the closest I have to vomiting.A few less loo visits but I have taken immodium as I have crohns. This nausea isn't like my usual.

The nurse said I may get put on to another drug but she is arranging for me to have a steroid injection in a couple of weeks as we have no idea when that will be. I should have seen the consultant on 6th March but it was cancelled and he is no longer doing clinics in that hospital so I am apparently on a waiting list for one at another hospital.

I feel fedup tired and very tearful and don't want my hubby to see me so upset as he gets angry (not with me )with not being able to help. I have lived with my various health problems and can usually amnage to deal wth them but this is getting the better of me.I am sorry to be moaning I know there are many far worse than me..
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  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
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    I'm so sorry to hear MTX is making you suffer. Have you considered having it by subcut injections, or have you already changed to this? Best wishes.

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Thanks for your reply Kathleen. I am still on oral MXT I haven't managed to get to the target dose of 15 mg. Unfortunately my consultant seems reluctant to give subcut injections , I do not know why as I haven't had the opportunity to ask him. The nurses I have hsd 2 weekly bloods done and seem an outpatient nurse 4-5weekly to discuss side effects but they are not rheumatology nurses they are filling in a questionnaire so they don't give any advice you have to try and contact rhumey nurses who said ask consultant.
    I have had many drug reactions in the past and wonder if this is why he wants to make sure I can tolerate MXT before allowing me to have injections. I just hope I get some sleep tonight and don't have to sleep sitting up again.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am sorry you are having such a rubbish time, I was put on meth injections to support anti-tnf injections, I began with the tablet version but they gave me a rash, after years of eczema I wasn't bothered but my rheumatologist was. A few years later I started the injections and so far so good.

    I haven't seen my consultant for over two years or a rheumatology nurse for around eighteen months, the service has deteriorated so much since I began. I wonder if cost could be a factor here, tablets must be cheaper than pre-filled pens but that is so NOT the issue. Wating to see if you can tolerate the tablets is nonsense and hard on you; the whole point of the jabs is they bypass the stomach thus ending the nausea. It would be lovely if this is a bug and it goes but from your history I suspect the meth tablets are the culprits. Medicos love theory and are unaware of time pressures - we have to deal with the reality. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Thanks Dreamdaisy I get the impression from the little phone contact I have had with the rhumey nurse that it is a wait and see process. I did expect some problems knowing my gut the way I do and have tried to deal with them but apparently this consultant doesn't like you taking and antiemetics to help with the nausea. So I feel I am left to find answers from forums, it wasn't even explained t me when was best to take my meds just MXT Monday folic Friday. I really wish I could make some of the doctors go through what we do then they may get where we are coming from.
    I did sleep until 4.30 before having to get up for the bathroom runs and it took me an hour to persuade my stomach to accept half a bowl of cereal.I will probably be a little better toady but it all starts again on monday night you could say life is never boring!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I read on the leaflet when and how to take omeprazole (that was when I wasting time on naproxen) and was told about alendronic acid (first thing, two hours before the before the omeprazole). Major faff. Getting off the steroids helped get shot of that nonsense and the better combination of meth and humira duly dispatched the naproxen. As for the meth I took the tablets at night to sleep through any possible side-effects, others on here do that and also split the dose so it's not a big hit on the body. It is sensible to take tankers
    (I love the idea of that!) TABLETS with food as that helps the stomach deal better with things but you know what is best for you. I have never been afraid to break the 'rules' because, in my experience, rheumatology do at the drop of a hat. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    My bowel is OK but NSAIDS did for my stomach years ago as a result of which I've had to take omeprazole for years – and sometimes gaviscon -despite being unable to take NSAIDS any more. I've been lucky with my meth and hydroxy, though but I always take pills with at least a small, plain biscuit for my stomach's sake.

    As DD says, we have had people on here who take their meth at night or in a split dose to circumnavigate problems though increasing the folic acid does seem to be the regular advice.

    If you have the runs, your problems seem to be more bowel than stomach which, I guess, makes sense. I'm not sure what might help. I know ginger and peppermint are supposed to help nausea. I've a feeling that, in your circumstances, dairy products are a bit of a no-no but better check that with a pharmacist.

    I'm wondering why you're sleeping upright. Is that to combat nausea? If so, it'd probably help to do what is advised for GORD. I don't eat for two hours before I go to bed. If all is well I allow myself a small cuppa before turning in but, if things feel remotely dodgy, I just have a swig of gaviscon :oops: (Yes, it's supposed to be a measured dose but i'd need two hands to hold the bottle and another two to hold the spoon steady and, due to an oversight o my parent's part, i don't possess four hands :wink: ) Better not take gaviscon, though, unless 'allowed'. The empty stomach does help.

    I have swallowing problems (The GORD and arthritic neck) and, DD, I don't think I could manage an entire tanker :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Thanks DD and SW I have not been able to take NSAIDS they play havoc with my gut. I am already on 1 omeprazole am and 2 at night. I was sleeping propped up to reduce the nausea but it makes my arthritic neck worse, most of the time I am getting up as being out of bed seems better. I think the dogs wish I would stop pottering about at night they need their sleep.
    I take any tablets with either a meal or a biscuit . This nausea feels like a tightening heavy feeling in my stomach.Usually I get alot of water rash but not with this and it hasn't gone as far as vomiting but I am getting more indigestion. I feel hungry but when I try to eat I either don't want it or feel full quickly.
    I am going to see what happens on Monday with the reduced dose and take it from there I can't face feeling this sick all the time, I am so tired.
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Update I was bad on Sunday but had the best nights sleep for a week with 5 hours. I have spoken to 2 different rhumey nurses this morning and they say if I am getting symptoms with oral MXT I will get some symptoms with subcutaneous. I wasn't keen on continuing with MXT even with reducing dose by 2.5mg I totalled my sleep in the past week and it was less than 24 hours I couldn't face another week like that. One has suggested I stop for a week and restart at 10mg next week when my gut has settled down. Another rang to get me to continue now but I need to sleep I am just too tired.
    Lunch today was the first meal I haven't had to force down and the first time I haven't felt sick, I can't bear feeling like this. They have spoken to consultant and I am to have a steroid injection in 2 weeks as MXT hasn't made any difference to my joints but to continue with oral MXT.It is probably a good idea I am not seeing him any time soon if at all as it seems that all my care is going to be from a distance relayed via a voice on a phone. I wish he had to go through this and then he just might have a bit more compassion for his patients but I suppose if you only ever see them once you aren't going to have any rapport I know they are under pressure but we still have to live with this condition a little help would be nice.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I'm so sorry things are still bad for you. Clearly your rheumatology department has their own way of doing things and are sticking to it. All I can think of is that either you get them to liaise with your gastroenterologist(? Whichever consultant you see for your bowel problems) or you yourself have a word with your GP to see if (s)he can help. A GP won't countermand the consultant (Though, come to think of it, a very brave one, who knew me well, once did for me) but might be able to liaise on your behalf.
    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
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    The whole point of sub cut meth is it goes nowhere near the stomach so why the nurses think you'll feel the same is beyond me. Mind you they are only nurses, probably healthy ones to boot. I was fortunate in that in my early days one of the rheumatology nurses had RA so she truly understood the patients' conference;. she couldn't do her own injections though which I found hilarious.

    I'm away from my usual environment at the moment and having a tough time thanks to unfamiliar furniture and a stupidly spongy bed. Go on holiday and feel worse! is hardly a catchy slogan. :roll: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Thanks SW and DD, I am getting the clear impression that they don't like sub cut meth though I know of at least one lady in our village who uses it and has done for a long time.I am dreading Monday and if I have a repeat of last week I will be straight on the phone to them. I do not have a gastroenterologist but I will try to get an appointment with the GP. I am just enjoying being able to feel like eating not feeling so nauseous but still have indigestion. The rhumey is adamant I continue with MXT as he believes it is "The Gold Standard" it has done zero for my symptoms and that is one thing they don't seem to ask about "how are your joints or your pain"
    Sorry your holiday isn't RA friendly DD maybe there should be a RA travel book that lists RA suitable venues. I can't stand a bed you have to dig yourself out of. Hope you enjoy the rest of your trip and that your weather is better than mine we have snow today just when all the lambs are being born.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Just a guess. They possibly don't ask how your joints are because that can be irrelevant. If the blood tests show that the meth is working they'll be reluctant to stop it. i think many of us on here have gone through a bewildering phase where the pain is excruciating but we are blithely told the meds are working. That's because a fair bit of the pain is now coming from the OA which set in when the meds weren't working or we weren't on any. DMARDS don't help that.
    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
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    I have PsA so my joints are damaged in a different way to RA and OA too, the PsA was playing up before we left and now the OA is having fun thanks to my knees and other bits being forced to bend too far. Gotta love it. :roll: As I say to my husband arthritis is a case of mind over matter: I do mind and that doesn't matter. :lol:

    I attend a teaching hospital, that shouldn't make it different to others but I think it does have an effect as it has to be more aware and up-to-date in its thinking and practices. Right, I'm off to the shops for pretty things, excellent pain distraction therapy! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Now there is an idea retail therapy as pain relief, enjoy your day.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, how are things going now? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    I have taken the 10mg as instructed by the nurse and the nausea has returned not as bad as with the 12.5mg but as bad as when the other consultant put me on 3 folic acid a week but the consultant I have will not allow you to take anymore folic than 5mg a week.
    I am due to go to the outpatients clinic on Monday for bloods and to fill in their tick list of side effects and have the steroid injection ordered by my consultant. I am feeling pretty sick of feeling sick I think dealing with the RA is enough without being expected to deal with such severe nausea as well. I hope you have recovered from your trip DD .
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Thank you for asking after me; the trip set me back but that's normal so no big deal.

    Your rheumatology department does not sound to be of the best, what the consultant likes has nothing to do with your reality: I doubt he has arthritis so what does he know? Docs like their theories, we have the reality. Folic acid is a natural supplement and has been taken for six days of the week by many on here. Have you tried splitting your meth dose, say taking two half doses two or three days apart? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    I have tried to discuss that with the rhumey nurses on the phone but I get the usual answer that the consultant doesn't like that, he feels that you don't get the full effect from the MXT. His reasoning that you shouldn't have more than 5mg of folic acid is it stops the MXT working. I don't like getting edicts third hand from this consultant and feel I am being fobbed off to some extent. The reasons for not being able to have subcut were daft to say the least one was I would have to travel to the hospital every week to have it I wouldn't be able to do it myself at all. How stupid I give myself IM antiemetics when I am bad subcut will be a walk in the park! the other if I am nauseous on oral I am going to be nauseous on subcut.
    I really am worried that they are talking about adding another drug to the MXT without really discussing it with me, and without adequate monitoring the nurses at the hospital are not rhumey ones they are unable to answer any questions or give advice. I have had drug ractions in the past and do not want to go through any of that mess if I can help it. I have had a bombastic consultant in the past who took me having a reaction as a personal insult because I couldn't take the drug he wanted me to. This rhumatologist regards MXT as his gold standard I am getting the impression that you have to take it as per his instructions MXT monday 5mg folic friday. I should have seen him for the second time 5 weeks ago but it was cancelled and I have no new appointment. I really am dreading that nausea returning.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I suppose I am so used to it all it is sometimes hard to see it with fresh eyes. My thoughts are that your intransigent consultant is not at home with you so split the dose and see how things go. If the nausea eases that will be a good thing and tell him you're taking it weekly as prescribed; you're feeling better, he can feel smug. If it doesn't work then it's time to find an alternative medication or try the injections. I went weekly to my hospital for a few years to have my meth done but then they changed to home delivery and I do my own which in one way is much easier but I do not get my blood results now unless something is amiss. Over the years I've realised that if my GP contacts me there's no need to respond as their criteria are very different to the hospital's. If rheumatology do, however, then I act. A couple of holidays have been mucked up by emergency blood tests but that proved they were keeping an eye on me.

    The first rheumatologist I saw in 2001 was coasting towards retirement, an old fogey who was, on reflection, woefully out of touch with things. He assured me I did not have an auto-immune arthritis so there was no need to bother his department. By the middle of 2002 I was on two DMARDs and an anti-inflammatory: guess I proved that twerp wrong. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    That is a good idea I will try that this coming week, I,ll tell the opd nurses how bad the nurses has been and see if they note it down they are very keen to put down that there has been a little improvement even if there hasn't. I also want it noted that I still haven't had the replacement appointment I am not asking for one soon but to have a date in the future will help to stop me worrying that I have been forgotten.I had an appointment for pain management cancelled in the past and despite ringing up on numerous occasions it wasn't until over 11 months later they contacted me when they had been audited and my notes were found at the back of a filing cabinet.
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Went to OPD today and made it clear how bad I have been feeling, also made sure it was noted that I am unhappy with not getting a replacement appointment. I was informed that my consultant is leaving the department in May and there will only be a locum this unit is already running with one less consultant and has been for a couple of years. So it seems that I was not going to get and appointment anyway. The OPD nurse has noted that I should see a rhumey nurse for my next visit but I have no idea when that will be.

    I have taken a split dose this week and will see how that goes as my consultant is leaving I am going to do what I can for my comfort.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Is OPD out-patients department? Rheumatology departments everywhere are buckling under the strain of improved GP recognition of these conditions. Back when I began in 1997 my then GP hadn't a clue, now they are much quicker to offer blood tests and referrals which is all well and good but the staffing at the next level isn't there, it's not a 'glamorous' area of medicine (medic slang for rheumatology is 'rheumaholiday'). I haven't seen my consultant for over two years, back in the good old days I saw someone every three months. After twenty years I'm not unduly bothered but for those who are new to this malarkey it's not good enough.

    I hope splitting the dose proves to be effective, I've been on this forum for years and know it's helped others. Yes, the docs are there to guide and advise but they are not the ones taking these meds or living with the possible side-effects. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    Thanks DD the nausea still woke me but wasn't quite so bad.Yes OPD is outpatients they have no experience of rhumetology and are unable to give any advice at all. It isn't their fault and I can see they feel awkward when asked questions. I have seen the consultant for 10 mins when he dropped the bombshell on me then nothing. If it wasn't for the forums I would be going mental ( or as my other half would say more then usual). Thanks for all your advice it is priceless.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    You're more than welcome, I am sorry that you are not receiving more replies but increasingly the forum is about information, not support: to be honest I am increasingly feeling that there's little more I can offer as my experiences are no longer relevant to the new generation of arthritics who naturally expect much more of the meds than is going to happen; in all my years on here only one person has been able to stop the medication because their RA burned itself out (congratulations to williamlargs!)

    Arthritis is a complicated world, I've never bothered going to A&E because I know there is nothing they can do, I've never discussed the PsA with the GP or the osteo with my rheumatology unit; you wouldn't talk dentistry with your car mechanic or solving engine trouble with your dentist but for some reason people expect every area of the NHS to be able to get them better. Having lived with the NHS since childhood I know better, and am used to living a life limited by poor health, but those who have not had any dealings with it until arthritis arrives have no idea about the limitations of both the service and medications. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
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    I know what youmean I have had health problems since childhood and was diagnosed with crohns at 22 I was seriously ill when pregnant and have spinal degeneration and OA for many years . To me normality is so different to others peoples perception of good health. I feel lucky if I can manage to keep control of my contitions to allow me to do the things I can manage to do and enjoy. Distraction is very important and keeping active in any way possible.Once I have more experience to share I will try to help others, but at the moment I fell a little out of control and confused. I think I need to talk with GP and get to another unit as the hospital I attend at present will only have one instead of 3 and I don't think this early in my treatment it is good to have no consistency in care. RA is just another thing I am going to have to learn as much as I can about, find what works for me . I know there is no getting rid of it is now part of me but I don't want it to control my life as much as it is at present.