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Methotrexate Options
LouiseMc
#1 Posted : Wednesday, December 15, 2010 9:02:42 AM Quote
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Hi

I've been taking Methotrexate 7.5mg since the 16th of November, but I just wondered if anyone else has found that they have a bit of a upset tummy a few days after taking it? I felt really rough yesterday & ended up coming home from work and staying off today as well. Yesterday, I felt sick, upset tummy and off food which is really unlike me! It was my husbands birthday on monday and we went for a meal with his mum and dad, and I started to feel a bit odd and couldn't it anything and had to keep popping to the loo, how embarrassing! Blushing

The only thing I've changed is when i take my folic acid, I was taking 5mg two days before MTX and two days after but when i saw my consultant last Tuesday he told me to take 10mg in one go two days after taking my MTX, as I take this on a Tuesday I was taking folic acid Sunday and Thursday night, so following my appt last week I didn't take folic acid on sunday and was going to take 10mg on Thursday instead.

I was meant to be increasing my dose of MTX last night to 15mg but my GP advised to leave it this week as Im not feeling well but he seemed to think that I could have a bug? He said that upset tummy was not a side effect but on the drug info given to me from the hospital it does say can cause sickness and diarrhoea but my GP said that as my last few blood tests have all been normal he doesn't think this would be causing it? Confused

I did call my rheumy nurse yesterday but she has not come back to me yet so i will call her again today, but just wondered if anyone else has had the same problem?

I have had so much time of work this year with RA, does worry me but my team leader was ok with me yesterday and it was him that said if you get to a point where you feel you need to go home then go, but I really worry about whether they can stop my pay at some point. But they have been really good so far and have changed my chair and keyboard which does help, He seemed Ok just now when i called, we have our works do on friday, really don't wont to be feeling like this, i can see me not going because i will be worrying about it! Sad

Would love to hear from you

love
Lou xx

I love people who can make you smile even when you do not feel like smiling. x
Sara-R
#2 Posted : Wednesday, December 15, 2010 9:31:15 AM Quote
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Hello Lou,

I've been taking MTX since 8 November, 2 weeks at 7.5, 2 weeks at 10 and the last 2 weeks at 15. The day after taking it I feel like I've got the hangover from hell and this week has been the worst. I take 5mg folic acid 2 days afterwards. Also couldn't really face any food yesterday either, I've just forced down some breakfast so I can take my diclofenac but it was a real struggle. If I wasn't self employed I would have rung in sick yesterday as well. The GP gave me some omeparzol to help with the nausea and stomach 'issues' which has helped. I think I've got a bit of a cold which may explain why I've been feeling so rubbish but I'm going to see my GP again to make sure that's all it is. I've also been very thristy and lots of headaches.

I struggled to get to my dance class last night, ending up doing a tap class in jazz shoes because I couldn't face the pain in my feet and its the first time I've been there when I've wished it would finish and I could go home to my hot water bottle and blanket on the sofa! It seems to be par for the course and I gather that as your body gets more used to it the yuk feelings subside. I'm very much hoping so because feeling so bad as well as the RA pain etc is not pleasant in the slightest and pretty depressing! I'm trying to hold on to the fact that I'm 6 weeks in now and that's half way to the flaming stuff doing its job!

Hope you get to your works do but if you have to go home early so be it. I always hated them so had a plan B to get away early anyway! Hold on in there Lou, it can only get better!

Sara
LouiseMc
#3 Posted : Wednesday, December 15, 2010 10:12:53 AM Quote
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Thanks Sara, but sorry to hear you are feeling poorly too. Hope you soon feel better. I must admit I don't really feel like my works do, not like me but really don't have much interest in things at the mo!


Well i finally got hold of my Rheumy nurse and she advised that i should really increase MTX by 2.5 each week rather than double the dose in one go, so will try that from next week. But she did say that mtx can cause sickness and diarrhoea sometimes but is a bit odd that i feel like this a good week after taking it so it could be a bug but hard to say. All i can do is see how the rest of the week goes I guess.




Lou xx
I love people who can make you smile even when you do not feel like smiling. x
SueB
#4 Posted : Wednesday, December 15, 2010 10:49:58 AM Quote
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I take mtx (on Saturdays) I felt really sick on Thursday and had to stay home on Friday. I was sure it was mtx linked - even rang my GP for advice, but when I came back to school on Monday it was like a plague pit!! 70 children (out of 350) off sick and numerous staff. I seem to have got off lightly and there have been suggestions we have swine flu - one definite diagnosis. I can only assume that as I had the vaccinelast year and the combined flu/swine flu one this year I have been protected. Thank God for vaccinationThumpUp

Hope you soon feel better
Sue x
suzanne_p
#5 Posted : Wednesday, December 15, 2010 11:10:18 AM Quote
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hi Louise,

i didn't suffer with any tummy problems taking Methotrexate,

but i did increase it gradually ... i started off at 10mg then for 2 weeks went to 12.5mg and then another fortnight to 15mg.

i'm now on 20mg and again increased it by 2.5mg for a fortnight i.e. 17.5mg to get to the 20mg.

i have always taken 10mg Folic Acid 2 days after taking the Methotrexate.

so would definately recommend you edge up slowly.

hope you're feeling well enough to go to your work do on Friday.

Suzanne x
AnnieB
#6 Posted : Wednesday, December 15, 2010 11:39:04 AM Quote
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Hi Louise,

When diagnosed in May this year I was started on 20mg weekly and no folic acid and it took approx 7 weeks to get into my system. I don't get an upset stomach but have no appetite for 2 days after taking it.

Hope you can go Friday and enjoy yourself but as Sara says have a Plan B ready.

Anne x
gempud
#7 Posted : Wednesday, December 15, 2010 12:58:40 PM Quote
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Hi Lou

I take 15mg Methotrexate on a Thursday and I notice I always feel like I have a slight hangover or like I'm starting with a cold on the Friday. I take it about an hour before I go to bed on the Thursday because otherwise I tend to feel a little bit nauseous. I have noticed I have a lot more stomach pains than before but I suppose that could be down to a number of the drugs I'm on. I take Folic Acid every day apart from Thursdays.

Gem
x
Pain is inevitable. Suffering is optional.
Lorna-A
#8 Posted : Wednesday, December 15, 2010 2:19:41 PM Quote
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Hi Lou,

Yes I am the same as you I take MTX on Saturday and I had a nasty tummy the last few times I have taken it. Also felt off my food for a few days. Must be this time of year. I will mention to my Rheumatologist when I see her on Thursday. I take Folic acid just 1 24 hours the day later, I notice Gem is still taking hers daily, You should query this as it has all been changed. I used to take it daily too but I was changed some months ago. Just thought I'd mention my bloods were all good too.

Hope this a help to you.

Lorna Smile
Sara-R
#9 Posted : Wednesday, December 15, 2010 2:36:51 PM Quote
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Hello Lou,
Quick update, my lovely GP managed to fit me in this morning and confirmed I have a bit of a temperature and the sore throat and cough is just a slight upper respiratory tract infection, not the dreaded MTX lung! I apologised for being a bit of a paranoid mad woman but he said not to worry and it was always best to get these things checked out. He said that I probably felt so dreadful yesterday as a result of the combination of having a bit of an infection and the MTX 'hangover'. So maybe you're feeling so bad because you've got the bug/MTX combination? I must say that I'm already feeling a bit better, getting my afternoon's worth of being full of beans (well about half full to what I used to be), I know it won't last but I thank my feet for behaving themselves and enjoy it when it happens! Also being reassured by my GP has helped a lot with what's going on in my head. Hope you're feeling better soon as well.
Sara
x
jeanb
#10 Posted : Wednesday, December 15, 2010 3:18:30 PM Quote
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One of the know side effects of MTX is an upset stomach. Maybe your GP would prescribe a stomach protector for you? If you continue to feel ill, then injectable MTX is aways an option. I was sick for a couple of months when I commenced taking mtx and then everything was fine until the dose was increased and the sickness returned. Now on injectable which has sorted me out!
Love Jeanxxxx
Maria_R
#11 Posted : Thursday, December 16, 2010 8:31:29 AM Quote
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Hi Lou

I started on 10mg mtx in May , increased to 12.5 in July. and apart from a bit of queasiness for the first few weeks, I have had no problems- although I appreciate that everyone is different and I have always understod that it can affect the stomach. It is early days for you, and it's great that your bloods are normal. Since having RA I often feel off my food- when it first started, I had very little appetite, and lost quite a bit of weight (which I needed to -can there really be a positive to RARazz )I take folic acid 5 days a week- not the day of and after the mtx.

Could it be a bug though? There are some nasty ones around at the moment. I got one at the weekend- so bad that I still wasn't well yesterday, and had been having bad abdominal/ back pains so I saw my gp. For some reason, my RA levels shot up suddenly last month so he sent me for blood tests as well. Having a compromised immune system means that these things can hit us hard and hang around for longer. I hardly ever got any bugs before I started mtx -any I did get were mild and short lived and I used to shake any colds off very quickly.

I've had quite a lot of time off work too, although it tends to be a few days at a time rather than long spells.Re pay- as a teacher, I do get paid. When I was first diagnosed I had an occupational health assessment but this was basically about practical adjustments as initially I had mobility and pain issues. Employers should have policies in place regarding health, sickness etc- it would be worth getting copies of these. The NRAS will be able to advise on work - yours and employers' rights. Sorry to wear my teacher's hat, but please check it all out so you know where you stand on everything, to protect yourself. I don't want to worry you, but my head was always seemingly helpful and nice to me so I though everything was fine. I always took his word on everything, and then, out of the blue I was told he was starting capability procedures against me! I have to add that he is a particularly nasty piece of work who has other agendas -so please don't think I'm suggesting the same thing will happen to you. I got through it all ok- but one thing I have learned is to look after no 1 and make sure I'm clued up on everything. I'm a member of a union who are very helpful. I have also cut my hours- I only do 4 days a week which has helped a lot with the RA .


I hope you are able to go out and enjoy yourself on Friday- I should have gone to a gig last night which was part of my Christmas present from hubby, but I just wasn't well enough. I was so upset as I'd been looking forward to it for months. Oh well- another time maybe.

Take care- rest up, and I hope things settle down for you

Maria x
LouiseMc
#12 Posted : Thursday, December 16, 2010 9:36:06 AM Quote
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Thank you for all your replies and advice Smile

Well I'm starting to think it could be a bit of both mtx and a bug. I did eat yesterday but not a lot but last night i had an upset tummy again. (sorry too much info) This morning again i just feel a bit yuck, I have called in sick again, work did seem ok when i called in, they have now said a couple of times to me that they know I've been through a lot over the last few years what with the failed ivf cycles and now RA so hopefully i wont have any problems but you never know do you once HR have to get involved.

Well I've made the decision not to go to my works do tomorrow, because even if i go back to work tomorrow I dont think i should then really go to a party, guess that wont look good either! Plus i would hate to go then have to rush off! Blushing So at least now I have given them time to see if someone else would like to take my place.

I'm sure many of you would agree but it would be so nice to just be our old selfs again, I really don't feel like the same person anymore sometimes when i look at our wedding pictures i get upset because i just feel that Im not the same person, I really thought back then that we would have a family and everything would be Ok. Plus i think i was a little more confident then, I've never been full of confidence but now i worry about everything which doesn't help. I'm so sorry I really need to stop feeling sorry for myself things could be a lot worse! I think all these feelings up come up again to the surface again as my sister-in-law's, one had just had her second child and the other has just announced she is pregnant, its really hard as they are so close with being sisters. Thats all our family and friends now with children, so its just us without and I know we both wonder what life will be like when we are older. I guess it may happen for us one day but think we both realize thats its very unlikely, plus what good would i be when lifting a cup can be difficult let alone a baby!


Right Lou, snap out of it!!! Mad


Sorry ladies

Lou
xxx
I love people who can make you smile even when you do not feel like smiling. x
Sara-R
#13 Posted : Thursday, December 16, 2010 11:19:25 AM Quote
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Hello Lou,

It's really tricky trying to work out what's going on with your body isn't it? I've never been very good anyway, just ignore it, it will go away sort of attitude, so its a whole new learning thing. This forum is great for advice and moaning, so don't apologise for a few moans, you've got every right to be upset. I get frustrated, angry, upset and downright nasty at times! When you feel so unwell and you think its not going to get any better its difficult to focus on what life could be like.

I've always been a firm believer in if I want something badly enough I can make it happen, this is no longer the case, I'm never going to do Strictly when I'm 61 like Pamela Stephenson, I'm never going to get my garden the way I want it under my own steam and I'm not going to be able to carry on with my job long term either. This is tricky stuff and although nothing like wanting to be pregnant and not being so, is the same sort of coming to terms with what RA could mean. I looked at my husband's face the other day and asked him what was wrong, oh I just want you to be well, my snappy reply? Get over that one then, its like you not wanting to be 49 soon! So yes, we can tell ourselves to snap out of it but also are entitled to our emotional moments. In the positive times I can tell myself that the MTX is going to work and things will improve and when it does I've got a list of stuff I want to do whilst I can. I just want some control back and I'm sure you do too.

Giving the works do the elbow seems like a good idea, its a pressure you don't have to deal with now. Good luck Lou, hope you feel better soon. Oh, my little tickly upper respiratory tract infection which I have now shared with my husband means that he's still in bed obviously with man flu whilst I'm managing to get some work done!

Sara
x
AnnieB
#14 Posted : Thursday, December 16, 2010 2:33:39 PM Quote
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Hi Lou

You snap out of it in your own time, crikey I was down all last week and know exactly how you are feeling. I've had to take things easy this week and its hitting me quite hard.

Sounds sensible to me that you called quits on the works do, thats another bit of pressure that you don't need at the moment.

You will feel better soon hopefully and your outlook on things will change, just takes time.

Keep posting and sharing your thoughts, it does help.

Anne x
Lorna-A
#15 Posted : Thursday, December 16, 2010 7:56:56 PM Quote
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HI Lou,

I saw my Rheummy today and I asked about the tummy upset and MTX. She said it can affect you at the start but should settle down. In my case I have been on it for 3 years and I have been taking it far to late, long after tea, she said taking it nearer to teatime may help. Also I hate taking it and the stress could be affecting me too. So as from Saturday I am going to take it early and not fuss about it. Without it I would be in a sorry state. I am going to try to be positive about it again, as I never had any problems before.

You said about having a baby, who told you ,you can't. You are just getting to grips with things give yourself a chance. You will not always be as bad as you are now. You will have a little one too just give yourself time and be positive about the drugs helping you. It does work, I have been as bad as one could be, in fact I actually thought I was dying. I went from being a tough cookie that stopped at nothing to an invalid dependant on anyone to open the multiple tablets I was taking for the pain. I was unable to do this myself, in fact I could do precious little, I needed helped onto my feet to walk, I had lost the use of my right arm and could not turn my head or stand up straight. My hands were decoration they did not bend at all. You can imagine the difficulties I had. But once I was told it was RA apart from being devastated at the start, I made up my mind I could not get any worse. It was a long hard road but 3 years down the line, In fact I have been well for most of it. I CAN do EVERYTHING I did BEFORE only with more care.

I am telling you this to prove to you, it will get easier and YOU WILL be the same person in time again. With a little bundle, of your own, then you will wonder where your time went Smile All good things come to those who wait. Chin up and look forward, don't worry about the future it belongs no no one. We do not know what it holds so be positive about NOW. Take care and Have a Lovely Christmas. Thinking about you Lorna x Smile
Maddie-W
#16 Posted : Tuesday, December 21, 2010 7:39:32 PM Quote
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Hi Lou.
Like the other posters, I get horrible nausea with MTX. So much so that they had to drop me back down from 20mg as I just couldn't eat. I am now on 15mg but take Cyclazine anti emetic half an hour before I take the MTX which has definitely helped. Have been on MTX for about a year now, but the nausea doesn't seem to be abating, hence the Cyclazine.

So sorry you are having trouble. Hang in there. And keep talking to your GP as well as your Rheumy. My GP has been brilliant - really supportive and understanding of the fact that it's so important to me to keep working. It was her who suggested adding in the Cyclazine.

Take care of yourself.
Love Maddie
Eve_V
#17 Posted : Tuesday, December 21, 2010 8:34:26 PM Quote
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