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Methotrexate well that didn't last long

PaleogirlPaleogirl Posts: 75
edited 30. Sep 2016, 11:35 in Living with Arthritis archive
Took my first 10mg dose with the idea to build up to 20mg on Monday. It is now Friday and I can barely move. Rotten flu like symptoms, severe sinus pain and a sore throat and cough.

Rang hospital and actually got through. I'm to take no more methotrexate and need to see a GP today. I have an appointment at 5:20pm

I'm at work but my legs don't want to work and I'm overwhelming tired not to mention utterly scared!

The hospital were also concerned I had started the methotrexate before I'd had a chest X-ray but then I was told to start it this week but couldn't get an X-ray appointment to the middle of next week

Comments

  • BruthaBrutha Posts: 51
    edited 30. Nov -1, 00:00
    Sounds to me like you need someone to explain all this to you fully, it may seem less scary then. I couldn't absorb what they told me at first. It was confusing. And I was worried. I took the other half along to see the rheumatologist and she took notes. That helped. What helped more was that she then knew that I wasn't exaggerating or anything like that. She may not have ever felt that way but I had any doubt removed from MY mind that she may think that.

    I am on 25mg per week of that MTX and I have noticed in the last month that it gives me a mild cold every time I take it. It's good that you got through to the nurse straight away. There is plenty of reliable advice out there, once you find what's reliable near you. My gp is good. My employer terrible (work for British gas and they don't even have an occupational health department now!). My rheum nurse doesn't remember me from one visit to the next, the consultant remembers everything. For you it will very likely be different, but non of them should rush you. You need to be given time to absorb all the info. You need to afford yourself that time as well. When I was where you are now, and I was which is how I feel like I can hopefully help you, i rang arthhritis care and they talked me through a lot. Helped me translate the doctor speak into my language. Please keep asking for the help you need until you find out what exactly you need to know.

    Tiredness is usual for me. I am in bed at 9pm every night at 40years old. It isn't my fault. And it isn't to be held against me (exceptions are when I just wilfully ignore the arthritis and and stay out late, drink beer and have fun- it's worth it someeimes). The same applies to you.When my legs are in a state of exhaustion and just too damn tired to want to move it indicates a flare is on the way. My flares are nearly always a direct result of tiredness or stress.

    Best of luck, you will find a way of making sense of it all. There are many nice people here, -"and out there in the real world as well.

    Good luck, I hope you keep looking until you find the people or persons to help you make sense of this.

    Mark
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    How did you get on at the GP's? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    Hi so sorry for not replying sooner I've just been totally whacked. Thanks Mark for all your kind words.

    Hi DD, doctor hoping I've just got a virus but has given me a prescription for antibiotics which I can cash if it gets a lot worse which it isn't, it's clearing up.

    Consensus seems to be a reaction to the methotrexate rather than anything else. Have to hold off the flu jab now for a couple of weeks.

    Can't go back on the methotrexate until the consultant has reviewed but she is away for two weeks. Xx
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I suspect that you were already hosting the virus when you began the meth, it chose that time to appear when it was needed the least. I hope you are feeling as better as you are able. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    Ta. Waiting to hear back whether I need to start again. Had a chest X-ray yesterday but suspect they won't put me back on it until I see the rheumatoid nurse on the 18th
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Paleogirl wrote:
    Consensus seems to be a reaction to the methotrexate rather than anything else. Have to hold off the flu jab now for a couple of weeks.


    Probably not exactly a reaction to the meth but, as DD says, I'd guess you were harbouring the virus when you took the meth so it just encouraged it..

    I have no problems at all with meth other than the occasional day of fatigue the day after taking it. But I've learned, over the years, to skip my weekly meth if something feels amiss because I can be fairly sure that, if I don't, whatever was amiss will soon be much more amiss :lol:

    I omitted it yesterday because, for a few days, I've had some virus or other. By yesterday I was feeling much better but I saw no point in offering it another go at me, especially with my flu jab coming up next week and our removal the week after. As long as we take sensible precautions with meth it's a safe drug.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I've been dealing with this malarkey for some years now and, despite much experience, it is occasionally difficult to decide on my best course of action. This week I have had a sore throat but I've been in the same house as workmen replacing ancient flooring (dating back 40 years plus). Bug? Dust? I decided dust so did my meth injection this morning. Later I rang my GPs about my 'flu jab and, for various reasons, I'm in for tomorrow morning. Talk about timing! :wink: They don't contact me because my meth and humira is prescribed by the hospital so my GPs have no idea that is the case. I prefer doing my admin, at least I know what's what.

    So, come tomorrow if I become poorly then I do (I don't regard the arthritis as an illness, it's a fact of life) and will recover. If I don't become poorly then that's fine.

    There's no doubt you are on a steep learning curve and I hope that your rheumatologist and nursing team will be able to offer more info and support, I worked in a specialised area of teaching and, in my early years, often forgot that my familiar 'language' was gobbledygook to my clients' parents. I'm sure the same applies to medicos, they just forget that we don't know what they know. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    I think my problem is being in the medico profession I know too much lol.

    I didn't realise you could stop and start it. I think I will probably be put back on it when I see the rheumatology nurse for a follow up as I've had my chest X-ray now.

    Was speaking to my own practice nurse and she said to try it again if offered but to not worry as I would be heavily supervised with blood tests every two weeks and they would act if they were concerned.

    Got flu and pneumonia jabs on Tuesday next week so rather glad I'm only on the hydroxychloroquinine at the moment!
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Paleogirl wrote:
    I didn't realise you could stop and start it.

    Done it many a time. Sometimes for weeks before and after ops but always take advice first. You're i n the early days. I've been stable on it for 16 years.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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