Side effects of Methotrexate. HELP

butterfly
butterfly Member Posts: 17
edited 14. May 2017, 08:59 in Say Hello Archive
Hello everyone. I have been diagnosed with psoriatic arthritis although there is very little of the skin condition, but the joints ect painful! I am on Methotrexate injections and I am really struggling with upset tummy, hair loss and sleep interruptions. It is also having an adverse effect on my kidneys. They sometimes feel bruised. I have left various messages for my nurse but they haven't got back to me yet. My next appointment with them isn't until end of June. I have made an appointment with my GP but that isn't for another few weeks!!! Luckily I had some 10Mg injections so put my self onto the lower dose hoping it will be better. The pain in the kidney doesn't feel too bad. I have regular blood tests and no one has got back to me so I assume their ok? My hair is falling out quite quickly and my consultant said to take folic acid for 6 days but the nurses changed it to 1 weekly.What can I do. By the way I love this forum, it is brilliant. Thank you. :?

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums, butterfly, from the moderation team.

    I am very sorry to hear you have PsA and that you are struggling with your injected dose of Methotrexate. It sounds as though your rheumatologist suggested one thing, folic acid 6 days a week to help the side effects, but the Nurse suggested it be lowered to once a week.

    If it would help you could telephone our helpline on: 0808 800 4050 and don’t forget your own local pharmacist is an excellent source for medical advice.

    I can promise you will get lots of support from the members on here, many of whom have similar problems to you. I agree with you this forum is brilliant!!

    As moderators we are here to help with any issues you may have using the message boards so feel free to send us a message if you need to.

    I look forward to seeing you posting on the boards.

    Best wishes

    Ellen
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello butterfly and welcome from me too. I've taken tablet meth for many years with no real problems.

    You ask what you can do. I'd say:

    1. Don't pre-suppose that your blood tests are OK just because no-one has contacted you. Where are you having them done- at the hospital or at your GP's surgery. Chase up the results. Ask either your rheumatologist or GP to check that all is well.

    2. The blood tests will tell if all is well with your kidneys. You can't tell just by how you feel in that area.

    3. I don't understand nurses countermanding the rheumatologist's decision, especially when you are having problems. Folic Acid helps to mitigate the side-effects of methotrexate. If the rheumatologist said 6 days I'd personally go with that unless the nurse has given a good reason why not.

    4. Don't prescribe your own dose of meth. Check with your rheumatology helpline if possible and your GP if not. 'Weeks' is far too long to wait for a GP appointment. Take anyone in the practice - it doesn't have to be your own GP - and make it clear it's urgent.

    I hope some of this will help. This needs to be sorted and long before the end of June. Good luck.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • butterfly
    butterfly Member Posts: 17
    edited 30. Nov -1, 00:00
    Hello and thank you so much for your comments, they are really helpful.

    Getting an appointment with any GP is hard work. Generally 3-4 weeks at a time, and that is at any of the several clinics throughout our city. But I will do as you suggest and chase up the results, I have them done at a local 'supermarket' and then the results sent to my consultant.

    The reason I went back to 10mg is because that is what my consultant and I discussed. He had wanted to go to 20 but I couldn't cope with the side effects. It was the nurses who raised it again


    I have left numerous messages on the rheumatology help line, the last one 2 weeks ago!!! You end up giving up as you feel as if you are 'bothering them'.

    I will ring the GP and ask whether they have any results from the blood tests, as I believe all results are on line now.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I too have PsA without much of the skin trouble and take injected meth (15mg). I know that nausea is a common side-effect with the tablets but the injections are meant to solve that as the medication is sub-cut rather than ingested. My hair has thinned over the years (I've been taking it for around eight, it supports my injected humira) and yes, my hair has thinned but I'm not bothered. My joints constantly hurt and have done since this nonsense began back in 1997, I now also have OA in some of them which contributes nicely to my pain levels.

    In all my years of blood tests I have had them done either at the hospital or at my GPs surgery, never in a supermarket (and quite frankly, I wouldn't even if I could): the results are sent to both parties. I used to get my results on a regular basis when the hospital did the injections but now I hear nothing unless something is wrong - then one or the other gets in touch. My GP ignores my Psa (and rightly so, it's not in her remit) and my rheumatologist the OA (ditto). Sadly I can't ignore either. :wink: I have to arrange my own 'flu jab because my meds are not prescribed by the GP surgery so I am missed when they trawl their records.

    I have never had my Consultants instructions counteracted by nurses, if yours stated FA six times per week then that is what you should be doing. I have the benefit of experienced behind me, I am now twenty years in and very familiar with the does and don'ts of this business. You sound as though you could be quite new to this, is that the case? Two further thoughts: are you taking only methotrexate and have you been advised to stop it if you contract an infection? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I'm starting to see why things are so fragmented for you. Do you live in one of the 'outer reaches' of the UK? Most people have a surgery and stick with that. I'm in a fairly rural area so my GPs have two surgeries in different towns but four in a city? No wonder there is little communication. And, whatever the set-up, 3-4 weeks is too long to wait for an appointment. Their only excuse would be if you were insisting on seeing a specific doc at a specific clinic.

    Were you given a little book in which to keep a record of your blood results? My first one was blue and my current one pink. Each surgery has its own methods of recording them but it's good to have them so that we, as well as the docs, can monitor changes. You can also ask to be copied in to any letters sent by your consultant to your GP. That would also help you to keep on top of what's happening.

    I wonder why the nurses raised the meth again? Had you rung to say you were struggling on 10mgs? Or, had the consultant instructed them to do so because your blood results suggested the higher level was necessary? Nurses don't usually countermand the consultant so for them to raise your meth and lower your F.A, seems bizarre. I think you need some clear advice from someone who knows your medical history.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • butterfly
    butterfly Member Posts: 17
    edited 30. Nov -1, 00:00
    Hello, thank you so much for replying and help
    Yes I know that sounded a bit weird re blood test at the Supermarket, but seriously they are great. They are from the local hospital and you go and wait with no appointment, a doctors appointment for a blood test can be a couple of weeks wait, and the hospital is such a trip! I did wonder about the nurses changing things but when I thought about it, the consultant did initially want me on 10mg, then 15mg then 20mg (yes I am new to it) but the side effects of the higher doses were really unpleasant, my last appointment with my consultant we decided that I would take 10mg for the foreseeable future. I wonder if that hadn't been forwarded to the nurses? But yes the nurses did change the FA. Having a book for the blood results sounds a brilliant idea, I will look into that. Stickywicket you certainly sound as though you have organised your care routine, I do hope I get to your position!
    dream daisy, you are right things are very fragmented and perhaps I need to be bit firmer. But no matter what doctors appointments take anywhere upto 4 weeks, particularly if you want to see one specific doctor.
    I think also that I am struggling to accept that I have Psa!!!
    I have now been transferred to the doctors for medication prescriptions only and they are already making that difficult. When I went on line to order some more, my injections were not even on repeat :x Then when they finally put them on it was 1 only. I contacted them asking if I really have to request my injections every week. They said they would speak to the doctor. I went to pick them up today and guess what there was only 2 injections, each on their own prescription and signed by a different doctor :?
    I am now getting a bit down in the dumps with it all. I thought once I was on the meds everything would be ok, how wrong can one be. Sorry, rant over. :(
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I haven't actually organised my care routine at all. It was organised for me by my hospital and GP. My rheumatologist prescribes the dosage of my tablet meth and the GP provides the booklet and his phlebotamist does my bloods.

    I think the more people / organisations involved the more the likelihood that communications will encounter problems. It sounds as if your consultant and GP aren't communicating too well re the meds. Personally, if things are difficult, I try to speak to someone rather than rely on online communication. It's easier for me as I'm retired but I think your best plan is to make a GP appointment to sort out your prescription problems. However, don't expect miracles from the meds. They dampen things down. They don't get rid of everything.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • butterfly
    butterfly Member Posts: 17
    edited 30. Nov -1, 00:00
    Stickywicket, you are right, I agree, my GP and consultant are not communicating very well, they and me need to be more organised of which I usually am! It all started really well or so I thought. I have made an appointment with my GP and I will start going to him for bloods, that way I may get to know what the results are. I have had 4 blood tests over recent months and no one has ever got back to me with the results positive or negative.
    I do know that the GP cannot change my meds without the consultants say so and I think perhaps the nurses have possibly over stepped their role, but also perhaps I haven't been knowledgeable enough to make requests and take control of my care. The nurses say to ring them and they will contact you back but that doesn't happen, in future I will not ring them but make appointment with GP.
    Funnily enough today is one of the best days, I certainly feel more positive and want to be proactive in dealing with these issues.
    Thank you for your comments I really appreciate it. I think it is you that has made me feel more positive, thank you.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    If you are feeling more positive that is a very good thing as a positive frame of mind does somehow give us the impetus to tackle things. I know when things are bad for me because I go very indecisive. Things seem too hard and complicated to deal with and I can't decide where to start. The people on these forums are great at just encouraging and suggesting and giving us a bit of a nudge and making us feel not so alone.

    I now, after about 17 years of methotrexate, only have blood tests every three months but it's much more frequent at first. I've always had them done either by a nurse or phlebotamist at my GP's surgery. My GP always let me know immediately if there was a problem and asked me to make an appointment. It's only ever been low iron levels for me.

    I think, if there is currently no rheumatologist at your hospital, most of your problems probably stem from there. Indeed, the nurses must be run off their feet which might explain – though not excuse – why no-one has returned your calls. But you shouldn't have to deal with this on your own. Your GP should be fighting your corner for you and not making things worse. On the other hand, they might be only prescribing weekly because it is known that you are having some difficulties with the meth and they don't know how long you'll be on any one dose. In such a situation I'd go to the GP and explain and ask what can be done. Without a rheumatologist possibly, sadly, not a lot.

    I think it's a good plan to ask about being given your blood results. It's good to know them but actually the main thing is that you will know that someone has read them. Having them done in neither the surgery nor hospital does raise the question of who does get them. It might be that your GP hasn't seen them either. For the record I think it was my GP who first provided me with the record booklet. I'd hand it in with every request for a meth prescription and get it back, updated, with the prescription. We recently moved house and my new GP simply asks me to bring it in when I have a blood test and the phlebotamist updates it then.

    I think your path is nowhere near as smooth as it could be due to no fault of your own. However, we all learn sooner or later that we must do our own admin and never presume things are OK / will happen. Sometimes they have to be chased up. I hope it goes well for you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran