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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Just felt the need to let some of this out to some people who know. Just taken my 4th dose of MTX, 2 weeks at 7.5mg, 2 weeks at 10mg, more to come next week, hurrah! Bloods OK so haven't got any of the terrible side effects. Feel absolutely dreadful after taking it and for the rest of the day, then totally good for nothing the next day, feel a bit better a couple of days after but still only about 3 hours of anything like energy each day. I suppose this is par for the course. Is it better to take it in the evening I wonder? Pain in my jaw last week was unbearable, better now but still painful to eat sometimes, oh yes it likes to travel doesn't it?!
GP has just prescribed 150mg of Diclofex which has brought down the swelling in my hands, feet are not as bad as they have been but I still feel like the little mermaid where every step is like walking on daggers. Also got a box of Omeprazol for the nausea, indegestion and stomach ache, this is brilliant stuff, I like this drug!
GP looked at me like a I was mad when I said I was planning to go to Venezuela in February and was there any way I could have the jabs, he said he'd get back to me, nothing yet but I suppose that's out as well now.
Tried to carry on as usual with my business at the weekend and paid for it big time. I now know that with the best will in the world I can't do what I planned to do this weekend coming which puts a hell of a lot of pressure on my poor husband but he's up for it so gold stars for him. For a moment on Saturday I felt, yes I can do this everything will be fine, then 2 hours later nearly in tears with the cold and pain and right down there with I'm going to have to pack this in I can't do it any more, lots of pitying looks from colleagues and offers of help. I DON'T WANT HELP I WANT TO DO IT MYSELF!!! So frustrating! I've told my neighbour, who has been so lovely, that I can't eat any more soup, I've got RA, I'm not an invalid!!!! Can you all hear me screaming??!!
I've got an OT appointment on Friday when I hope I can have a good chat about the future workwise and get some idea as to whether or not I can carry on with my business. I think the future is the most difficult thing to get my head round with this diagnosis, the uncertainty of it all is really getting me down, it doesn't help being a natural planner, organiser and control freak! Any advice on getting the most out of the OT? I've started a list but I'm sure you out there will have some pearls of wisdom!
Thanks all for reading my moans and groans, I enjoy reading yours, it makes me feel better!
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Sara
First of all, I think most of us take our mtx in the evening. It's best to take it after your meal and with a full glass of water (not juice, or milk or anything else - just water.) If you can avoid lying down for an hour or so after taking it, this is also supposed to help with tum probs. I've never been told why, but as it's horrid stuff, I wonder if it could damage the oesophagus if it "stuck" en route to the tum. As I am not a doctor, this is purely a guess on my part.
I've been on mtx for about 8 years now and apart from a few minor probs with liver levels, have done extremely well on it. I remember very well the tiredness and general feeling of yuk for the couple of days following the initial few weeks "dose!" I think things should start to improve once your body starts gets used to it and RA wise, things should start to improve in 12 weeks or so - so do hang on in there.
You MUST rest, at least until you are starting to benefit from the drugs. We've all felt that we really should carry on regardless, but it's important to space your days out - work, rest and play with more rest than the others.
I have only my own experiences to go on, but having been in wheelchair for 8 years, I am now walking, albeit for very short distances, without my crutches and this is down to MTX and plaquenil.
This will sound very trite - but just take each day as it comes. Don't worry about getting your head round it all - I have never quite got there, despite 8 years of RA
I'm sure those members who have had recent OT assessments will be able to help you with this one.
Take care
Love Jeanxxx
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Sara How much folic acid do you take? I take my mtx on Saturday morning and to start with took my folic acid on Monday. When my mtx dose went up and I started feeling sick my consultant upped the folic acid to everyday except mtx day and that made a huge difference. I have found that over time the fatigue has improved so really you do need to listen to your body and rest when you need to - at least until you adjust to the meds. Good luck and take care Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Sara Sorry to hear you're having such a rough time. It takes me back to my early days of RA when I felt as if nothing was ever going to improve.... but it did, so hang in there!!!!There were times when I felt desperate, but once things started to improve, I felt much better. I had 18 good months on sulfasalazine, when the pain etc was minimal, but after a while it stopped workng so they added methotrexate. I've been on it since May, started on 10mg then it was increased to 12.5. I always take mine in the evening after dinner. I felt rough at first but now I have no after effects. It took a good 3 months before there were any significant improvements. Most of the time I'm virtually pain free, although I did overdo it one week and suffered afterwards! I've been a bit up and down recently, but am putting that down to some recent stress at work and family issues. Like you, I'm a 'natural planner, organiser and control freak' and I often struggle to cope with the uncertainty of it. I was diagnosed nearly 3 yrs ago, and I still can't accept that I have to do things differently. I try to take one day at a time- but it's hard. I was working full time as a teacher up to July this year. I now do 4 days a week with Weds off and it has made a difference. I am still Head of Department and have resisted suggestions from the headmaster that it migh be a good idea to step down - I still want to believe that I can cope but I'm seriously beginning to have doubts. also- having done the job for so long I hate the thought of someone being in charge of me, and running the dept I worked so hard to build up. Stupid really- I keep telling myself that my health is more important! Please do accept the offers of help though- it makes such a difference, and it's great to have people who want to help you (sorry- don't mean to sound bossy) I haven't been for OT as such, so can't advise you on that. As my circumstances are different, I was referred to the occupational health dept of my local authority, who were brilliant, but that was more about what the school needed to do to support me. As Jean says- there wil be others who can help. To be honest- I feel I'll never get my head around it completely. Maybe I will. One day? Can I make a suggestion that you post under the'work' section about OT ,maybe it will be seen more quickly there? ( I really must stop telling you what do do  ) Take care- I hope things start to improve soon. Let us know how you get on at OT Thinking of you Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Sara Sorry to hear you're having such a rough time. It takes me back to my early days of RA when I felt as if nothing was ever going to improve.... but it did, so hang in there!!!!There were times when I felt desperate, but once things started to improve, I felt much better. I had 18 good months on sulfasalazine, when the pain etc was minimal, but after a while it stopped workng so they added methotrexate. I've been on it since May, started on 10mg then it was increased to 12.5. I always take mine in the evening after dinner. I felt rough at first but now I have no after effects. It took a good 3 months before there were any significant improvements. Most of the time I'm virtually pain free, although I did overdo it one week and suffered afterwards! I've been a bit up and down recently, but am putting that down to some recent stress at work and family issues. Like you, I'm a 'natural planner, organiser and control freak' and I often struggle to cope with the uncertainty of it. I was diagnosed nearly 3 yrs ago, and I still can't accept that I have to do things differently. I try to take one day at a time- but it's hard. I was working full time as a teacher up to July this year. I now do 4 days a week with Weds off and it has made a difference. I am still Head of Department and have resisted suggestions from the headmaster that it migh be a good idea to step down - I still want to believe that I can cope but I'm seriously beginning to have doubts. also- having done the job for so long I hate the thought of someone being in charge of me, and running the dept I worked so hard to build up. Stupid really- I keep telling myself that my health is more important! Please do accept the offers of help though- it makes such a difference, and it's great to have people who want to help you (sorry- don't mean to sound bossy) I haven't been for OT as such, so can't advise you on that. As my circumstances are different, I was referred to the occupational health dept of my local authority, who were brilliant, but that was more about what the school needed to do to support me. As Jean says- there wil be others who can help. To be honest- I feel I'll never get my head around it completely. Maybe I will. One day? Can I make a suggestion that you post under the'work' section about OT ,maybe it will be seen more quickly there? ( I really must stop telling you what do do ) Take care- I hope things start to improve soon. Let us know how you get on at OT Thinking of you Maria x
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Yes taking the MTX in the evening seems so obvious now! An idiot's guide to RA would be great, maybe the next career! I'm taking 5mg of folic acid which I've been told to take it 2 days after the MTX maybe more will do the trick, I'll ask next week at my review. Tried to get up this morning but felt like I'd drank a bottle of vodka last night, fat chance! But now 3 hours later managing to get it together a bit and do some work. Maria, telling me what to do is fine, sometimes I just need somebody else to confirm what I know already but won't give in to it! Stubborness to the extreme as well as all the other personality defects. I know what you mean about other people telling you what to do, I reckon I'm just about unemployable now after several years of being self employed so hold on in there, you've worked hard to get where you are and I'm sure it would be difficult to let go, so that's me being bossy now! You also deserve your pension for being a teacher, I know I couldn't do it. Thanks for the advice about OT post, I'm on to it.
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sara, Sorry to hear you are having such a hard time at the moment. Taking MTX at night is great I have done this for years, if you have any unpleasant feelings you will be asleep and will not know about it. It will settle down, I remember I used to have problems in the sun, feeling sick and tired but now it's minimal. Keep in there it does improve given time. The cold is probably a lot to do with the way you feel too. Don't give in, find ways to do things with ease if you can. Thinking about you take care, Lorna x 
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Sara
Yes I can hear you screaming, I've been there with you many times. I am also someone who doesn't like to ask for help. seeing even the ironing building up can stress me out. The bath needs a good clean but I know if I do that today then I will suffer tonight. We have to remember that tomorrow is another day and it can wait, maybe I'll have a good day.
I really hope MTX kicks in soon for you. I started on 20mg in May and it took about 7 weeks to kick in and I felt free again. Unfortunately I had to stop for 2 weeks in Oct and waiting for it to kick in again.
Oh to be free of pain what a lovely thought.
Take care
Anne x
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