HI All. As some of you will know I've been having some trouble with taking MTX lately re nausea etc. You may also recall that my GPs seem opposed to the idea of my taking it by injection - not sure why but they just are - they seem not to have heard of this option and certainly have no other patients who take it this way I was told.
My GP did suggest that I ask the rheumy about splitting the dose when I see him next week. He said he hadn't heard of this being done before but was unclear about why it shouldn't be done since it works cumulatively and is in our systems all the time - so why do we have to take the whole dose on one day he wondered?
So before I ask my rheumy a week today - and being honest I really don't fancy having to keep thinking about MTX over the week as the nausea also gets worse when I've taken my daily dose of Hydroxy - I thought I'd ask here if anyone knows why we take MTX once a week always unlike other meds such as Sulpha or Hydroxy? Tilda
For many years, I took my MTX at 12 hour intervals. It was the way my rheumy told me to take it in the beginning and no-one told me to do it any other way until I changed consultants some years later who looked at me as though I was mad when I told him that's how I took it. Perhaps they changed to guidelines.
My understanding is that methotrexate works by interfering in some of the basic processes of your cells, so damps the immune system by damping down cell activity. But you need cell activity to stay alive, so if you take MTX every day basically you're stopping too many of he normal renewal process you need. So I think it has been established for us that taking it within a 24 hour period once a week is the right balance. Enough to control the mad immune system, but allows the other 6 days a week to get back to some normal activity. Yes cancer patients take higher doses in bursts, but they face an even worse choice so risks are worth it I guess, and don't take it for years and years like we do. Remember I'm no doctor, so just my view..... Pollyx
As long as you were splitting within a 24 hour period, ie half at 8am and half at 8pm, you'll have been fine....
It's going over the 24 hours that is a bad, bad idea. You need cell activity for useful things like making new blood cells and bone marrow.
What baffles me is why docs don't explain things better as many of the 'accidents' could have been avoided if patients were more aware. One of the accidents was someone who went into hospital and they mistook the prescription so gave it daily not weekly. If someone came at me with a daily dose of MTX I'd clamp my teeth firmly....
There has been an incidence in the last year or so of a woman who died because she took 7 pills (17.5mg) and her GP thought this must mean one a day. Unfortunately some GPs seem to know a little about most things, but not enough about really serious things like MTX. My GP refuses to have anything to do with MTX prescribing. It all has to be done through Rheumatology.
Polly is right. You need 6 days to recover from the weekly dose.
I wish I knew why it has to be as often as weekly. I am fine when I cheat and take it once a fortnight, which I have done in the past because it has made me feel so ill.
wow, this is interesting, bit scary but good to have the knowledge!
Hope you get on okay Tilda x
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I agree Williby - glad I asked here now! TTx
That is so interesting and helpful thanks. It never occurred to me that spreading it out could further compromise our immune systems to the point of being dangerous? I was actually thinking of trying this one a day (as I'm on 7 tablets currently) but was going to ask the rheumy first about this when I see him a week today. All thoughts of this now out of the window of course!
It is odd that my GP doesn't know this as he's pretty hot on most things relating to rheumatology and the drugs or so I thought. He knew that when I was sick (vomiting) a week ago I could postpone my dose by 12 hours and still stick to the same day in future without overdosing. He just suggested I ask the rheumy if this split dose thing was possible because he would know if not why not. I've never dared to skip doses yet because it's taken me so long to get to the point where I'm on 17.5 that I feel grit determination to stick at it - especially as I'm not hobbling anymore and can move my wrists and fingers again. Maybe when I'm further down the line and confident that it's in my system properly I won't feel so loyal to the wretched stuff!?
I don't think my GPs like prescribing MTX too much either and stick to the rheumy's say so but up here there is no choice but to share the care for rheumatology patients between the rheumy and GPs. I personally think it's hard for them here because they become like lackies for consultants sometimes and can't monitor the disease activity because they aren't trained but are expected to listen and support patients who have no further access to rheumatology. I think they should get better funding and more specialist training if they are expected to prescribe such potentially toxic drugs. TTx
This makes interesting reading - I take 6 tablets of mxt, for over 3 yrs now, but over the last 3 months have been getting loads of nausea and very bad diarrorea (sorry about spelling) on Tue and Wed afterwards - the sort that you can't move with!
When I spoke to rhuemy he said to take half the dose on Mon and half on Fri - for me this has helped so much for the last 6 weeks - all the yucky symptom have gone - might be worth asking the question!!
I guess as long as you have a few days clear then it's ok, and the rheumy should know best anyway! Usually there's a huge safety margin, so when they say 24 hours they probably mean 72.....
I always took mine every thursday morning after a good breakfast after the firse 4 months the R,A agony reduced to a more bearable level of pain controlled with painkillers plus the other meds.I did feel a bit squeemish for a couple of days then I heard you can take it over 24 hrs so I took mine over 12hrs and the effect on the R.A was greatly reduced so im back to 6 at once on a thursday and only eat healthily and not too much for a couple of days>Im lucky it works for me everyones different.x
Yes until six weeks ago I was just a bit squeamish afterwards too - very tired and low for a few days but nothing that I couldn't hack or find ways around. But now it's in a different league where I feel as if I've been on a terrible boat journey and have had to drink a lot of whisky to recover and feel terribly hungover, tired, depressed and really barely able to function for at least a day after taking it. The red itchy spots I was getting on my face have gone away though - but it's made me realise how well I was doing on them before because even in pain I felt basically pretty well. Now I'm in no pain but feel too ill to enjoy it! Ho hum I'm really going to angle for injections I think even though my GPs both seem pretty horrified at that suggestion. TTx
I was told to take mtxate at night. Initially I did it first thing with breakfast, then got the runs, so that wasn't good. I think resting on it probably helps with the nausea.
And I've tried reducing the dose and paid heavily for it with aches and pains. It nearly disrupted my meds regime because the doctors thought the biological treatment wasn't working. I've always kept rigidly to the all at the same time instruction though. Hate having to take all those nasty yellow pills! But if it makes me feel better.
I really don't understand, Tilda why your medics are resisting you getting it by injection. I know several people who do inject and it has really helped them tolerate it. There is a special system for you to collect the medicine, but it might be worth trying that to see if it helps the nausea. Its just that some of the biological treatments are done by self-injection so if you could get through this hurdle it might help you and others in the future. As you know I inject byetta for diabetes and although I was horrified initially, I got used to it quite quickly. And that's twice a day. The mtxate would be just once a week.
Cathie XX
I know Cathie I don't need convincing re injectable MTX. It's so annoying because the woman doctor got all squeamish and said "oh no surely not - I wouldn't want that for you - it can cause problems if the needle doesn't go in fully and I think we should try and find other solutions for you before considering this option - no other patients here take their MTX this way?" and so on. She's great but maybe a tad too much empathy?!
So then I asked my main GP on the phone when I'd been very sick the day before (the night you were round!) and he said he thought that injecting was a step too far and shouldn't be necessary and he was sure it would settle down. I take an enti-emetic every night and it does help a bit but I can't take them in the morning because I get totally bombed out by them so it is becoming quite an issue for me. I am really hoping the rheumy takes my side on this business of injecting it actually because it just seems nuts - I know lots of people who have to inject insulin daily as you do so can't see why they have an issue with it myself - and apparently it's cheaper too! Tilda x
PS The only bad thing would be having to look at my horrible saggy tummy once a week - and having to show the nurse when I'm being trained - yiuck!!
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This could be an advantage Tilda. I find a big squeeze of tummy flesh helps the injection along.
Seriously though Tilda I agree with Cathie in being a little confused as to why your GP's are so against it. Perhaps they think that they will have to administer it to you which will impact on their resources. I believe that with it being cytotoxic they have to put safety measures in place. I remember that when I was in hospital and due to take my mtx they had to take me to oncology as it couldn't be administered in general ward (maybe something to do with licensing also). Perhaps your GP is concerned about the amount of hassle it will create - this may be judging them too harshly though.
I this is a concern then it may not be necessary as I get my injections delivered to my door by special courier who will also collect and dispose of my sharps bin when required.
It all seems terribly scary that they are all masked and robed against the stuff you are putting in your body but the nurse explained it was because of the quantity they handle daily and the amount I take at home doesn't constitute the same risk (nice).
I hope your consultant supports you in this Tilda. xx
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Well I think you are spot on Creaky - but I don't think it reflects too badly on my surgery if it's the hassle and additional expense of cover that puts them off as I do live in a small community with the smallest health board in the UK and the GP surgery is independent so anything new that potentially involves additional staff and training and insurance cover etc will be an issue for them.
I think they do benefit indirectly from me being a proactive patient and I plug them a lot to the rheumatology service who I know are very grateful to them and hold my doctor in high regard. I was told by a friend who is a former consultant that my GPs have a reputation for excellence which I support fully so I don't want to upset them if I can avoid doing so.
I did email the physio who acts as rheumy contact up here when the nausea first started and she asked my consultant. He replied with the message that I could try increasing my folic acid to 10mg from 5 - or try anti-emetics - or taking the same dose by injection - which would be tricky re sharps and training but this didn't mean it wasn't possible.
So I think the issue is the hassle for my GP surgery and the fact that it's cytotoxic so unlike injected insulin there isn't a system in place as there is where you are probably. I don't know how people who take anti-tnfs get their material though - I can't imagine that people on Enbrel or Humira would have to go all the way to Aberdeen for it for example (obviously those who have biologics by infusion do). But I think perhaps it bypasses the GP surgery for those patients and they probably get their medicines, sharps etc delivered by the hospital rather than by their local surgery. It must be a more complex business than I'm aware of but maybe if the rheumy instructs it then things will be different - here's hoping because I don't think I can put up with a drug that makes me feel sick for 2 days a week and sometimes more, otherwise.
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Yes, being in such a remote community must bring it's own problems and although it is fairly rural where I live, we are within an hour of both Plymouth and Exeter which makes it a lot easier.
For some reason my mtx injections get delivered by one company and the Enbrel injections are delivered by another. I assume it's down to cost in the end.
It must be miserable to feel so unwell after taking your meds.
Thanks Creaky. It is making me a bit fed up I admit. I have been walking the dog over the hill and having a little argument with my GP in my head that goes "you know I look after myself very well - exercise daily and eat really healthily - don't smoke or drink - and I didn't ask for RA. Lots of people here cost the health authority a lot more than I do and some through their own bad habits or lack of effort - so if it's a choice between dropping a dose and letting RA get worse again or letting me take MTX by injection is that really such a big additional cost and hassle for you that you aren't prepared to let me try it?" - of course I won't say all that but it's how I'm starting to think! TTx
Good or bad I was told some years ago to take the MTX (15mg) over two nights. It certainly helped to take it just as I went to bed, and now only rarely get the runs (can't spell diahorea). After reading all the comments i am now a bit concerned whether I'm doing the right thing.......
Well me too if the rheumy says I can split the dose when I ask him on Thursday Ethan? I would so much rather be allowed to inject than have to take two lots of pills - at least with taking them once a week it's all over and done with in one go? TTx
Like the others say MTX can only be taken once a week. Seeing as your GP was unsure about this it might be worth your while to keep plugging for MTX by injection with your consultant especially when he finds out about all the gastric problems that you have been experiencing. I will keep my fingers crossed that he will say yes. Wendy xx
My rheumy told me I could take it all at once or split the dose breakfast & evening meal time. I found splitting the dose worked best for me. If you take it all at once the best time is to take it before you go to bed but after a big meal. I always took the tablets after a big meal.
What I've read you should take all the dose within a 24 hr period.
I do this already Sci - take the whole lot after dinner or later at night. I now take an anti emetic too so don't feel so instantly dreadful but in the morning I start to feel sick and by afternoon just go to bed and lie there feeling like I'm going to die - its horrible and lasts most of the next day too. I suspect splitting the dose within 24 hours won't make a lot of difference and will simply write off more of the day and I take Hydroxy earlier which always makes me a little squeamish for a few hours after too.
Tilda xxx
No he meant splitting it over the week -I double checked. He said he had never seen this done so there was probably a reason so he suggested ask my rheumy as he would know whether this was a good idea as a way to get around the nausea. I think I should ask him just so he knows that a GP he is doing shared care with doesn't know - because the consultants should be making GPs aware of this if it's potentially dangerous? I really hope he will agree to instructing the gps to let me take it by injection but because it's shared care he might be anxious to keep to the status quo and not rock the boat - that's my worry. Tilda x
Hi again tilda......I had same problem with sicky feeling. Was advised to take a folic acid day before and day after dose of MTX. Definately worked hope does for you. Take care x
Okay I might try that although I was taking a lot more folic and then I got paranoid it was causing the sickness so now just take 10mg 3 days after as my rheumy suggested re nausea.
I have a friend who works as a hospital doctor but was a GP here until a few months ago staying with us and she says she didn't know about splitting dose of MTX either. She says really it's the rheumatology who is prescribing although she and her colleagues carry out their orders so, while they shouldn't be breached nor is it the duty of the GP to have studied this drug because they are just carrying out orders.
She says that she hadn't thought about MTX much since med school but she was aware of one patient in the neighbouring health area to mine who takes MTX by injection. Apparently it caused quite a hoo ha for the GPs and is still quite a big deal for this surgery because it's cytotoxic and has to come up form the rheumy dept in Aberdeen in special red sacks and the patient collects it directly from the surgery I think. But it does show it's possible at least! TTx
Much sympathy with all the MTX sufferers. I don't feel sick but just generally washed out the next two days. This is two sevenths of my life I am losing and as I am in my sixties, there's not much of it left anyway.
I also cheat and take it every 10 days or so - just so I can get some quality of life .......although I don't suggest anyone else should do this!!!!
This is a very interesting debate, and I will be talking to my rheumy about it to see what he thinks next month.
X jan
Hi Jan -Just to say I am about to blog on here and say how things went with my rheumy a few hours ago which has relevance to this earlier question re splitting the dose too. TTx
mtx wipes me out. my consulant okayed me to tahe my dose - 12.5 over 2 consec nights 7.5 on sat and 5 on sun.
rgards, sandra
Does taking it this way help you Sandra? My consultant said I could split the dose if I kept the 2nd dose within 12 hours of the first but he did also say his colleague had a different approach. He feels splitting it makes it less effective.
Does taking it this way help you Sandra? My consultant said I could split the dose if I kept the 2nd dose within 12 hours of the first but he did also say his colleague had a different approach. He feels splitting it makes it less effective.
Hi Tilda, I have been taking 4 - 2.5mg tablets once a week. 2 with breakfast of 2% Greek yogurt, tart cherries, honey and chia seeds. I take 2 with dinner. I get tired and have had some acid reflux but no other symptoms. I also take 5mg prednisone twice a day, planning to taper off soon. MTX is a very strong drug and should only be taken once a week for RA. Wishing you good health, Penny
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First dose of mtx inj 25 mg
2nd dose of MTX
Late post MTX 3rd injections and increased dose
Tonight is the night that I take my first dose of MTX
