A whole new journey

Hi all,

I decided that Wednesday would be a better day to take my MTX as I had been warned that it could make me very tired so didn't want to mess up days that I normally have plans for :wink: .

Anyway, I took the first dose two days ago at 9am with my other meds, and all was well until about 6pm, when I started to feel really cold and just could not get warmed up, so I took myself off to bed with my hot beanies :roll: .....I still felt OK, just cold.

Thursday morning, I woke up feeling like a truck had run over me, with barely enough energy to get downstairs to take my meds...so I basically spent the day in bed watching TV :oops: .The dreadful fatigue wore off at about 5pm and I feel much better today, so hopefully that will be the only side effect I get.

I took the folic acid today and now have a wonderful file with all my medical history, blood results and a chart of all my meds and when they are to be taken :lol: . The family all know that in the event of me needing to go to hospital that the \"Blue\" file is to go with me :roll: :!:

Lizzie-Ellen....sounds like you had a wonderful time at the Eden Project and hope you are not too tired after all that walking.

My darling hubby is still busy investigating buying an apartment in southern Spain so that I have somewhere warm to de-camp to during our colder months. I took delivery of 4 books from Amazon on weds all about buying overseas and am busy plodding my way through them :lol: .

There is a huge ammount to be considered and a lot of legalities involved, so we won't be rushing into buying....but there are some fantastic bargains to be had at present, and we have friends with places there already who can recommend lawyers, notaries etc.

Hope everyone is doing well and have a good week-end.

Love, Pauline

Hello Pauline

I'm so glad to hear you have \"taken the plunge\" with the MTX and that, hopefully, you have got over the worst of the initial side effects.

The Spanish venture sounds great for taking your mind of the last few days - tell hubby to buy a very big one so we can all come! :wink:

Anyway, you having something to really look forward to now, Pauline - in fact, it's so cold here today I wouldn't mind being in Spain myself at the moment!

Hope the fatigue improves and soon.

MrsOxx

Hi Pauline. Sat in a traffic jam near Bodmin so thought I would check our blog! I'd like to PM you when I get home about buying in Spain. I have bought, sold and run a business in Spain so may be able to give you some (unasked for :lol advice!! I still have a house there so you can tell I love it! I do hope you're having a good day. Oooh, we're moving again :D

Love from Lizzie xx

Lizzie_Ellen,

That would be great....its a big venture so all advice from those with experience is most welcome 8) .

love, Pauline.

Hi Pauline,

I've sent you a PM with some bossy 'been there, done that' stuff about Spain! What I did forget to mention (and thought it appropriate to put it in the public domain) PMR is not uncommon in Spain and is well catered for. My next door neighbour Jesus (don't you just love the name ) has PMR and his treatment is very similar to mine. I'm now fluent in steroids and there side effects.

Hope you're having a good weekend.

Love from Lizzie xxx

Pauline - the coldness was the side-effect David remembers from when he was on MTX as part of his chemotherapy.

My bit of advice for buying abroad is definitely to go to the area you are thinking of a couple of times and explore out of season - and also try to think as if you were looking for somewhere at home to live rather than the way you think when on holiday. Make a list of criteria that are important - our list had the essentials in terms of shopping within easy walking distance on the flat plus an affordable restaurant for the nights you REALLY can't be bothered to cook! :lol: We live on the edge of a village with absolutely everything in little shops plus a middle-sized supermarket all less than 10mins away and a BIG supermarket 20mins walk in the other direction. Don't forget the GP practice and pharmacy!

And this is not meant to sound pessimistic - but do think about there being a decent hospital reasonably close. Our younger daughter is a paramedic in Whitby in North Yorkshire - she has forbidden us to live permanently in the flat we bought for her there as the nearest hospitals are 20+ miles away along twisting roads with lots of tourist traffic whichever way you go and the better one is the further away. :roll: :wink: She sees holidaymakers of all ages having to go - and the more of the year you spend there the more likely a visit becomes.

I know everyone wants a rural retreat to retire to - but it isn't entirely practical as you get to middle age :wink: :lol:

Eileen

Thanks Eileen,

Very solid advice and much appreciated.

I have been \"out of the loop\" the last few days as the MTX is totally flooring me for a 36 hour period :cry: .

I went to meet a couple of friends for coffee yesterday and was only there for about half an hour when I suddenly felt really sick. My friend Barbara is a doctor, & she said I just became very pale and weak, so they brought me home & put me back to bed....had only spent the previous 24 hous there :oops: !!. Thankfully I was not the designated driver !!

I started to feel OK again about lunchtime...hubby was working at home & checking on me regularly, but this MTX is hard work :roll: .

I had a chat with my daughters riding instructor today,who also takes MTX, and she said that, although sorry for me , she was delighted that she finally had some-one to talk to who understood just how debilitated it makes you feel. She is only late 20's/ early 30's and she told me that she often feels that other people just think that she is being lazy when she says that she can't do something & have no idea of the level of fatigue experienced after taking it .

On the up side....apart from the tiredness and nausea, I am in slightly less pain than before, so maybe a four day week is the price I will have to pay to get back to a bit of normality :roll: :?:

Hope everyone is having a good week-end.

Love to all,Pauline

Dear Pauline

I'm so sorry to hear how poorly you are feeling - it's horrid feeling physically sick. Hopefully, the \"4 day week\" will be short-lived as your body adjusts to the MTX. It must be a bit reassuring at least to be feeling a bit more comfortable alread,y proving that the MTXmust be doing its job. Sending you lot of love and virtual hugs.

MrsOxx

Pauline - you're a better woman than I am, feeling nauseated absolutely finishes me. Do hope it improves soon.

There are other RA drugs and the idea is to find one that works without halving your available life.

Hugs, Eileen

Pauline, I found it wiped me out to begin with but it does seem that your body adjusts to it in time.

I find now that I occasionally get a 'tired' session the day after I've taken the dose but most weeks I am fine. Blame the steroid brain, but I can't remember if you have been given the folic acid too? If not, you should have been and you can put the dose up without any harm. Doing so may give you the edge over it, it definitely helped me.

Nefret

Hi Nefret & all,

Eileen...I'm not being at all brave...just want to give the MTX a chance as apparently it does take up to 6 weeks before any major impact is experienced, so want to give it a fair go before I quit on it :wink:

Nefret...I am taking 5mgs of folic acid 2 days after the MTX as it is supposed to help prevent mouth ulcers and other side effects.

I don't know if any of you have heard of \"Ketosis\", a condition that diabetics can get when hyperglycaemic and the body starts using up fat stores as energy. It causes a sickly sweet and quite distinct smell from your breath and urine.I suffered from it on thursday after taking my MTX on Weds, and I know it was probably due to the fact that I really could not face food :roll: .Because of my nursing background I knew that I just needed to eat more...but it is very hard to eat when you feel nauseated

On a positive note...it is nearly 1am and I am just back from a lovely night out with friends...the latest I have been up in a long time, and i feel grand 8) :lol: .....hope i still feel OK in the mornig !!!!

Love to all, Pauline.

My RA neighbour is on methotrexate ( fairly newly diagnosed ) and last week walked over a quarter of a mile with the help of elbow crutches along our rough lane and sat and watched another neighbour helping us with some drastic pruning. Then she wanted to walk round our very large garden then we all had tea and toast. We worried about how it might affect her but, although she went home and had a sleep, was feeling very pleased with herself. Hope that is encouraging, Pauline.

Do hope the nausea abates very soon. Like Eileen, I find that worse to deal with than bog satndard pain.

Good morning Pauline

Do hope it is a good one after that lovely night out. :D

Have you ever tried eating plenty of arrowroot biscuits on the days when you are feeling nauseous? Arrowroot is very helpful for anyone suffering with sickness although I've only ever tried it in the biscuit form. In the past I've recommended it for friends whose children have been sick and it's worked......although they wont eat anything else they seem to eat the biscuits! :wink:

Love and all good wishes :love:

MrsOxx

Hi Pauline, yes, ketosis = smell like peardrops? As a diabetic it is one of the things I have been told to look out for, but to my knowledge I've never had it.

Sorry it is hitting you so hard, have you thought about asking for some anti-emetics? My doc gave them to me without being asked but I have not often needed them; when I did they worked well.

Folic - I'm taking 5mg x 6 days a week, so I'm sure you have some leeway with this, it might be worth trying an increased dose.

Nefret

Hi all,

Glad to report that I am finally beginning to feel a bit better.....I don't know if it is the MTX or the fact that I decided off my own bat to up my steroids to 12 mgs, but definately less pain in the last few days .

Last weds, I could do nothing at all as I was so sore. My eldest son and daughter went to do the shopping for me.....came back with loads of sweets and NO meat for dinner :roll: , even though I had given them a list !!

Am off to Spain on 26th for 8 days with hubby & my daughter to have a look at a few properties out there and get a bit of sun as weather has been bleak here the last week...had to turn the heating back on

Lizzie-Ellen...we are staying in a hotel in Mazarron if you know that area??

Love to all, Pauline