Update on Injected MTX..

rebecca1
rebecca1 Member Posts: 30
edited 5. Jun 2010, 17:01 in Living with Arthritis archive
Hi
I asked your advice about injecting MTX instead of the tablets. Well I have tried it (albeit for only about a three weeks) but have found I have to say the the side effects are even worse. I have had to buy a bin because I sometimes cant even make it to the bathroom (sorry too early I know) :oops: It lasts for around 4 days and now i'm even feeling sick before the jab because I know how i'm going to be.
I had to increase the dose last week and of course it made me feel worse, so much so that I didn't take this weeks. I just couldn't face it...
I have made an appointment with the doc next week but I know they are going to give me that exasperated sigh :roll:
I know they are trying to help me but I have to take control of my life as i'm sure you all know it ceases to exisist as normal. I don't have an appointment with the hospital till November and am terrified i'm going to be in pain till then. I am on Sulfasalazine and when I told the consultant about the concerns I had with MTX he more or less switched off. Told me that I needed to be on it as it would delay the destruction of the joints. He also told me all the other meds are just as toxic and would probably make me feel the same.
I do understand what he is saying but the thought of years of vomiting, even months of it fills me with horror! I was offered another anti-inflamitory to add to the sulphasalizine though it would only help the pain and not the progression and was told that my levels showed there was a high chance it would happen sooner rather than later but have to say right now it seems like the ideal option. At least hopefully I woudn't have the horrendous pain.
I know it's my life but I would like to know your thoughts please. Am I being stupid or childish? I would appreciate your honest opinions. :)

Comments

  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hi Rebecca

    So sorry to hear your struggle just now. You are not being childish so don't say that!

    I too take Methotrexate but in tablet form building it up. At 17.5mg at mo. I haven't had any bad side effects aside from being a bit spaced out the first time and severe fatigue. The times I have been sick has been when I have taken Omeprazole tablets which were supposed to protect my tummy from all the Methotrexate, Diclofenac etc! Maybe ask your doc about such tablets?

    I can't tell you what to do however my main thought would be that Methotrexate is designed to halt or at least slow down the progressiveness of Arthritis - having extensive damage to our bodies will result in complications later on therefore we need to do all we can to stop it or hinder it at least.

    Sorry I am not any use to you with advice, you must feel stuck between a rock and a hard place just now. :shock:
    Keep positive and keep smiling :lol: Carol
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    Oh Rebecca Chick :(

    Being sick is diabolical..

    Some people just cannot tolerate MTX and that is that.

    Doesnt make you a baby or anything at all. Just you! Human and YOU!

    I take it you have tried the folic acid and the anti-emettics??

    If you ahve then - something else may be needed instead of the mtx for you.

    Do let us know how you get on.

    You ahve all my sympathy and i hope your bin will be obsolete soon.

    lOve and hugs

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    This is a lousy disease and they only have lousy drugs to treat it. Well, treat is obviously a totally inappropriate word because it implies cure.

    This is what meth can do. I have read posts from some people who have battled through it, the effects have subsided and thay have had great benefit from it. One of my practice nurses at the docs surgery loses entire weekends due to meth. She takes it last thing on Friday, spends Saturday and Sunday prone, with severe vomiting and blinding headache, then by Monday all is fine, her RA is much improved and she can work. She tolerates it for that reason. Others wouldn't tolerate it. It's personal choice.

    Everyone is different, everyone reacts differently. I have no side effects from injected meth, but then again I notice no difference when I don't have it for any reason. It has done nothing, at any time, to help improve my PA, either on its own or supporting other meds. Try it with anti-emetics, perhaps you need more folic acid. You, and only you, can determine your limits. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    Ring you rheumatologist and say that you can't continue with it. If the side-effects are that bad is is unreasonable to expect you to. There are other drugs they can try.
  • frogmorton
    frogmorton Member Posts: 29,884
    edited 30. Nov -1, 00:00
    It must be bad for you to be sick too much anyway

    dehydrate or something - throw that in as well :wink:

    Good luck

    Toni xx
  • rebecca1
    rebecca1 Member Posts: 30
    edited 30. Nov -1, 00:00
    Thank you for all the replies...it's much appreciated.
    I use Omeprazole because I take aspirin due to a heart attack but can't take Diclofenic cause the docs think that's what contributed to my heart attack.
    I also take anti-emetics Ondansetron but at £80 per pill and because they didn't help I didn't see the point , it was a waste.
    I do understand that meds like MTX really helps with the joint destruction but being sick and spaced out makes my life suck just now!
    Anyway I shall see what the doc say's..
    Thank you for all your thoughts.xx


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  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Rebecca – sorry you’re having such a miserable time and I hope that, by sharing my, not dissimilar, experience with you, you will see that there are perhaps other drug options for you.
    I tried mtx in both tab and injected form and, like you, I found that the injected form made me feel even worse (even though the docs said that wasn’t possible, given that the injection bypasses the stomach). The anti-sickness drugs didn’t help with the sickness and just made me feel too drugged to function. I wasn’t as badly affected by it as you are but, eventually, after a year and a half or so of doing as DD mentions earlier, losing every weekend to mtx side effects I decided enough was enough and told my rheumatologist so. He clearly thought it was, to a large extent psychological but he was supportive of my decision and I haven’t taken it since.
    Anti-tnfs were not available then so the next few years were a minefield of trying out different combinations of other disease modifying drugs – but there are lots of them out there. Ok, none of them worked as well as the mtx, but most of them – other than Leflunomide which made me feel sicker than the mtx - gave me no side-effects at all, apart from a nasty bout of shingles because I was over-immunosuppressed. Overall, for me, it was fair trade off of mobility against side effects and I never once regretted my decision to stop the mtx. Eventually the RA started to win again – but, by then anti-tnfs were available and I was lucky enough to be able to move to those – still without taking mtx alongside. I am now a number of years further down the line and having now been allergic to 2 of the anti-tnf drugs, I have now come full circle and am thinking very hard about whether I want to try another anti-tnf if it’s offered – or whether I would prefer to go back to the
    mtx and/or other drugs instead.
    I don’t know for how long you have had RA (assume it’s RA) but, given that us RA’ers are in it for the long haul you really do need to be able to have some say in what works for you – not just in terms of your joints, but from a quality of life perspective – something I think docs are inclined to forget. Your November appt is obviously a long way off, so I really hope that you will be able to get an earlier appointment to discuss your options so that you can begin to see a way forward.
    Really good luck with your docs appt next week – and please post with an update to let us know how you get on.
    Love Tilly x
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Rebecca I'm sorry to hear you're having such problems even with the injections. Have you tried taking a different anti sickness tablet? I take anti sickness tablets the day before and for 3-4 days after injecting the methotrexate and find they help much better. I'm currently taking metoclopramide as I did'nt think ondansetron helped me either. It would definately be worth trying.
    I wish you luck, rita