Date: 21.02.2012
From: Paula
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Subject: Mtx what the hell
Hi everyone,
Hope you are hanging in there and keeping warm.
I really do not know what to do here. I started on mtx 15mg three weeks ago, and what a three weeks it has been. I have had the feeling sick, but it is the stomach cramps and the diaohhrea. Three hour attack last week, and the last two days, yuk. The pain has been the worst it has been, I had my first blood test last week and the 20 questions from the blood test dept why was i on mtx? Which i did not want to explain, and feel i will have to go over it again next week after week 4 dose. I feel drained, knackered and the sleep is worse, and the depression has been a nightmare as i am battling to stay out of hospital at the mo, sorry to offload, know you all have your problems too, and far worse than this. Do these side effects get better over time, or is this it. No fun running to the toilet, and i can't eat. I am now dreading the day i take mtx as the following few days are crap! I cannot beleive the rhumy dr started me on 15mg on mtx, and she said the dose can go up again. Eh what? Is 15mg high as a starting dose or is it normal. Still trying to get my head around the illness, the meds, and the impact on life. Thinking of you all x
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Date: 21.02.2012
From: peter
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Subject: Re: Mtx what the hell
hi there paula, sorry your not doing so good, i was on mtx about 15 years ago and i was ok on it for 3 years but was taken off it for the same symptoms you are having, i was also getting mouth ulcers, i was on 25mg at the time, i have a friend who has been on mtx for over 15 years and it has been brilliant for him, there are a number of different 2nd line drugs its just getting you on one that suits you, unfotunately nothing is quick, try not to get to down, all the best pete
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Date: 21.02.2012
From: Colin
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Subject: Re: Mtx what the hell
Paula , thought 15mg was way to high to start with , know some people has but prefer if you were taking 7.5mg & increasing it every 3months as long as blood test are ok MTX can realy work well , main side effects I had on it is mouth ulcers & raised liver blood count , taking folic acid helps with both of these realy think you should speak to doctor & hope they help you
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Date: 21.02.2012
From: Jeanette
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Subject: Re: Mtx what the hell
Hi Paula Sorry to hear you are so rough. I am due to start mine next week so maybe I might say to Nurse would it be better to start on low dose so get it used to my system. I know they say it is better to treat RA aggresively sraightaway x
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Date: 21.02.2012
From: Paula
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Subject: Re: Mtx what the hell
Hi Guys
Thanks for comments,
Hi Pete, read an earlier post of yours and you are going through it, sending you a hug, and thinking of you,
Hi Colin, i must admit i tought the dose was high too, it is the upset stomach that is getting to me at the mo, but at least i am gettig treatment, be grateful for that at least.
Hi Jeanette, don't be put off by what is happening to me, i am only at week three, and my brother is on mtx and had no problems at all, it is down to the rhumy doctor what they decide, but be included in all the decisions, it is your decision. For all of you, it is the depressive cycle that gets me on top of the RA as I am rapid cycling bipolar to the two illnesses collide. A pain in the arse! Febraury is always a time I go down, am trying to stay postitive. Hang in there all of you and hugs to you all. Lots of luck with your ESA stuff Peter!xx
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Date: 22.02.2012
From: pete
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Subject: Re: Mtx what the hell
hi there paula, thanks for the hug and thoughts, here i am saying try not to get down and i am not exactly mr happy at the mo, can i ask if you are taking lansoprazole or something like that, they reduse stomach acid and reflux, they have helped me a lot,did your consultant offer you the injection form of mtx as i have a friend on it and he has no stomach issues on it, the dose is lower also as it goes straight into your system without your stomach absorbing about a third, i might have had a bit of a whinge on here the past 2 days but it is a great forum and you are all very nice and kind people, thanks pete
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Date: 22.02.2012
From: Lorraine
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Subject: Re: Mtx what the hell
Hi I have been on MTX since last october but only started on 7.5 mg when i went to my last appointment i saw a locum doctor well he was a professor , he said to up my tablets even though i feel ok i told him i had reservations about this with side affects he said people with cancer take 30mg and you only have 7.5 mg ! so i said yes maybe but i am not taking this for cancer am i so will agree to take 10mg and see how it goes but will come off the tabs if i am not happy he said it is my choice if i am not happy. i would take to your nurse and say you are not happy with the side affects
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Date: 22.02.2012
From: Paula
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Subject: Re: Mtx what the hell
Hi Lorraine,
Thanks for your reply, i did say to the consultant at the time that i was not happy with the dose, to be told she knew what she was doing and that she is a doctor, at my rhumatology centre I have never met the nurse, I have only had two appointments, I have seen the GP today and she is faxing some concerns to the rhumy doctor today, so see what happens hope you hanging in there, take it easy x
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Date: 22.02.2012
From: Sciqueen
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Subject: Re: Mtx what the hell
Hi I had the same symptoms on 15mg, plus loose stools as well as diarrhoea, nausea for 4 days. In January I was put on injection and almost all the above symtoms disappeared. I only get loose stools once a wk now and I am on 20mg. Ask to be lowered to 10 or 12.5mg, for a while then build back up to 15, give the drug time to see if it works, and if you still experience those negative symptooms ask to move to injectable mtx. Sciqueen x
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Date: 23.02.2012
From: Val
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Subject: Re: Mtx what the hell
Hi Paula, I started at 7.5 mg of mtx nearly a year ago and it has gradually increased. Last month consultant put it up to 25 mg, I was quite surprised as I felt quite well but blood tests and x-ray showed differently. I know 2 people who were on mtx and could not tolerate it. They both went to injection and are fine on that, no problems at all. If it continues do phone your consultant as when I had a side affect it is so draining and depressing. It's hard enough sometimes coping with RA but having things on top make it unbearable. I was told after 3 weeks things should settle down! Hope things work out for you and that you get something that will work for you without the side affects.Take care
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Date: 23.02.2012
From: Paula
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Subject: Re: Mtx what the hell
Hi siqueen, and val, thanks for your comments really appreciate it, the last three days problems with the shoulders and neck, and the pain was prescribed tramadol yesterday, along with paracetamol. Due to take week 4 on Saturday, so see what happens. I asked the consultant when i saw her if i could lower the dose because of side effects and she said NO! I had a chat with the GP yesterday and she is faxing the consultant, and waiting for one of them to get back to me, thanks for your comments, and hope you both are not in too much pain. Take care both of you x
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