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Date: 03.09.2009
From: ruthie

Subject: Week 3 of Methotrexate

Hi - new here.

I'm 39 and have had "non specific" inflamatory disease now since 2000 - basically my blood markers are split pretty evenly between RA, PA and Lupus.

After lots of different treatments I'm now at the Metho injection stage.

Week 1 and 2 I had 7.5mg. Yesterday I had 10mg and today I do not feel well.

I don't feel sick - I've just no appetite (and I like my food!), I feel shattered, my glands on both sides of my neck are swollen like eggs and I've had the runs all day (which although is probably more than you need to know smell like chemicals or glue and are a sunny yellow colour!). Oh and I've been on the edge of tears or in tears most of the day and I don't really know why.

Despite the pain I get from my joints I'm not really a poorly person but I feel rough today.

I know there may be side effects but the ones I seem to be having don't seem to be mentioned on the stuff I got from the hospital. I forgot to take my folic acid this morning too so don't know whether that could have helped or not.

All your views welcome :-)
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Date: 03.09.2009
From: val h :-)

Subject: Re: Week 3 of Methotrexate

hi welcome can not help u but want to get this to top so some one who can help will see it good luck hope u feel better soon
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Date: 04.09.2009
From: jill

Subject: Re: Week 3 of Methotrexate

Welcome Ruthie....im on Methtrexate, tablet form tho... on 17.5....I think u r right there, the increase has made u feel rotten....it will settle down in time...However, those glands do need checking out, I kn ow they r trying to fight off infection, that is y the glands swell, but they make u feel poo dont they.....lol regards Poo....I think the amount ya bod has taken in, has upset ya tum...... I get constipated and blimey, that is terrrible too..... if u carry on with the runs, U must ring even if its sat and speak to someone ok.....as u will get dehydrated, so make sure u drink lots of waterŠ!....they can also offer u a medication that protects your tum.....I wld also advise u take that Injection last thing at night..... that way your sleeping and its gettting into ya ssytem, by the morning its done its work, u may still feel yuk....but far less than taking that first thing in the day!...my experience is take it at night.....also, this med takes between 2 months and 3 months to get into your system properly..... speak with your nurse mb today with regards the runs..... best do that Now, rather than wait any longer, as I think about it, mention your glands too..... if u feel qweasy, try eating ginger nuts...or dry toast.... does help soak up the acid.....

hope this has helped a little....there r so many of us in here that can give u advice..so come bk, plus we need ppl like u, it does help others also

take care

Love Jill
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Date: 04.09.2009
From: Lynne

Subject: Re: Week 3 of Methotrexate

Hi Ruthie first of all welcome to the forum, nice to here from new people. been on MTX some years ago.. not on it now it stopped worKing for me. Thats good advice from jill dont think i can add to that.. there are quite a few people on here taking MTX and there have been a few posts on here about MTX if you scroll down through them.
Hope you feel better soon xx
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Date: 05.09.2009
From: ruthie

Subject: Re: Week 3 of Methotrexate

Thanks for the advice guys. By Friday I felt quite a bit better. I think I just scared myself a bit by how rotten I felt all of a sudden.

At the moment I am having the injections at the hospital so the time is dictated by that. However if I get onto having the home delivery I plan to do them on a Friday night so I take the hit through the night and the weekend rather than having to try and work through it as I will have to do at the mo. The hospital plan is for 8 onsite injections until I get up to the full dosage of 15ml.

My stomach has settled down but I rang the helpline about my glands and left a message for the nurse. Going to talk through it before I do the injection next week.
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Date: 05.09.2009
From: jill

Subject: Re: Week 3 of Methotrexate

Hi Ruthie

I have the home delivery plan....and your right at the mo u r dictated by when u hav your injections.... when u finally get your own, u can take them last thing at night on a fri(fab idea) deffo helps.... glad ya tum has settled down, mb its coincidence, ive been feeling unwell, sicky, and cant face taking my meds at mo....cant take the morning ones...... anyway...keeep in touch, the more people we have in our Little Forum the better!
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Date: 05.09.2009
From: val h :-)

Subject: Re: Week 3 of Methotrexate

jill morning ones. is there something u not telling us lol
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Date: 05.09.2009
From: jill

Subject: Re: Week 3 of Methotrexate

lol @ U!! I take 100mg Zomorph in morning and then 100mg Zomorph at bedtime....with lots of other meds in between....its a very high dose of morphine based pill..... enuffff to kill a horse, so ive been told by my doc lol
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Date: 08.09.2009
From: ruthie

Subject: Re: Week 3 of Methotrexate

Well I've not had a call yet. I'm loathe to have another 10mg this week if I feel so rough again. Sat/Sun I wasn't too bad but think because at home so resting. Monday felt rough - my glands in my neck are massive and sore and my throat is scratchy and coughing. Last night still awake at 3.30am (but on the plus side made great inroads into the new Adelle Parks chick lit!). I don't do feeling ill very well - I had cancer when I was a teenager and I'm just so hypersensitive to feeling unwell that I think I then feel worse than I probably am if that makes sense!

Thanks for listening.
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Date: 08.09.2009
From: jill

Subject: Re: Week 3 of Methotrexate

Hi Ruthie, im so sorry to hear that u had cancer as a teen, that must have been so scary, at any age it is.... i can understand y u feel nervous about al this happening to u now.... all i can do as support is to let u alos know that for us with this rotten disease is that there r many times we feel as u do....it does get us down, and i dont do being ill good either..makes me feel a failure all round.... I want u to know we r here for u and that mb u shld give them yet another call.... u ned to tell them about your throat.... I do know that we shld stop taking MTX if we have a throat infection....yu msut c your GP...he can also override the decision about your MTX... I personally wld take the lower dose that u had last week, rather than go up at the mo....mb not sound advise and I do urge u to ring and talk to your GP first... I dread taking my MTX im on 17.5 along with Enbrel...know how yur feeling...we do understand how u r feeling honest.... come bk and let out your feelings ok...hopefully others here can help u.... but I personally think U need to talk to the GP..if u cant get an appt, book a phone call, usually after surgery,thats when mine allow us to call...... let us kn ow how u get on ok

best wishes

Love Jill x
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Date: 09.09.2009
From: ruthie

Subject: Re: Week 3 of Methotrexate

Well I've spoken to the nurse and am going to see them Thurs. I've decided to have another 10mg dose as it should either prove that last week was a one off or that I can't tolerate the dosage. She did say though that a doe of 7.5 was not really worth taking so then it would be back to what to try next - anti TNF perhaps....I'll keep you updated.
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Date: 14.09.2009
From: Crusher

Subject: Re: Week 3 of Methotrexate

Hi Ruthie
I'm sending this from New Zealand (I pop in from time to time just to get a feel for what others are going through...). It is never easy to suggest to others what to do as we all react differently to these drugs. And Methotrexate can be pretty harsh. I suppose I can only give you some insight into my experience so that you can gain as much knowledge as you can.

I'm on 20mg of Methotrexate a week. Initially it did cause problems (nausia, pain, lathargy, headaches, etc) but after a few weeks to a month my body started to cope. However with each dose increase my body rebels again and I go through a few weeks of re-adjustment. You do have a few options to cope with the reaction which your health provider should be able to help you with. One option my specialist suggested was to split my dose over two nights (Friday and Saturday nights are best) which worked very well for me - maybe they can somehow split your dose?

Good luck
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Date: 14.09.2009
From: jill

Subject: Re: Week 3 of Methotrexate

fab advice Crusher.... wld love to go to new zealand...have family there... nera rotarua(forgive my spelling , cant remember how to spell it) come bk soon....
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Date: 14.09.2009
From: ruthie

Subject: Re: Week 3 of Methotrexate

Next update (sorry I don't get to the internet that much). Spoke to them last week and decided that I would have one more dose to decide if it was a one off or whether I really couldn't tolerate it.

And.....I've been OK - but I've just realised now as I type that I forgot the Folic acid again! Only issues this week were gritty eyes and again my glands swelled back up and are only subsiding a bit. They still are swollen though and that does concern me.

Had my bloods done again last week so will see what they show.

Also got a sore throat - not sore as in itchy - just like its a bit swollen and difficult to swallow.

I'm now in a difficult situation though that I can get there for this weeks dose and am then away for 4 weeks (due to work and holidays) so I won't have reached my max dose and I am assuming cannot have home delivery yet (the holy grail I think as then I can have the dose late at night on a Friday). So not sure what will happen there...
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