Treatment about to start at last!

Finally after about 18 months I recieved my first prescription for MTX and folic acid. Unfortunately I can't pick it up until tomorrow. Now I have to decide the best day for me to take it! Anyone have any suggestions? I know we are all different but any idea what I can expect, if anything? I have 7.5 mg to take plus folic acid the day after.

It's strange that I have been coping well with the diagnosis and it is only now the treatment is due to start that I am starting to worry about whats next!

I visited another specialist last week about the lump on my foot, surprise, surprise he had a different view to everyone else so far, he thinks it is capsulitis rather than a nodule (I know I was none the wiser for that either). However the Rheumy at Hillingdon has suggested a guided ultrasound injection of steroids. Just have to wait and wait for an appointment, some things never change.

Does anyone know if there is a Hillingdon group for us long suffering RA'ers?

I have also started to like the lump in my foot (not the pain it causes but the fact it is there) as, without it, I would never have been diagnosed so early with RA as I thought all the aches and pains I had were just a part of getting old. Now looking forward to being my cheeky, frisky, attitude of 20 year old (and the brain my OH suggests!) happy go lucky, retired and ever improving golfer. The last one is a bit of wishful thinking but we will see.

Have the best day you possibly can everyone. Catch up soon.

16 Replies

oldestnewest
  • Hi Richard

    glad to hear your treatment is about to start. It took me about 18 months before I started on MTX. They had to exclude other things first and the rheumatologist didn't want the treatment to mask other symptoms. Personally I take my MTX on a sunday as when I was working that tended to be a day that I relaxed. It seems to have worked OK for me, although that may change shortly as it has been suggested I now have MTX injections instead. Just waiting for an appointment.

    Enjoy your golf.

  • Hi Richard, glad you are on treatment at last. Hope you find the MTX works as well for you as it has for me. I walk everywhere now and do a lot of exercise with the dog including using one of those ball throwers so I can't see why you wouldn't be able to play golf again in the long run. You may need one of those electric caddies or even a ride on buggy though as hauling the clubs around is pretty tiring and the fatigue of RA and of the drugs can be one of the worst long term hurdles. My son plays golf so I know what I'm talking about having sent him off on many a competition over the years. If you like playing mostly at the weekend then I suggest Tuesdays might be good because then you should feel pretty good by the weekend as side effects tend to be in the immediate aftermath of taking the weekly dose? I take my 7 tablets tonight and find Saturdays and Sundays are usually the most manageable days for me which is good. Many people who work (I'm self employed) 9 to 5 take them on Friday nights because otherwise they struggle to get to work. Tilda x

  • Hello there, I started on 7.5 mg of MTX and the folic acid too just 4 weeks ago. I found myself crying with apprehension when the time came to take it. I've read of others doing the same, I think everyone worries. Gulped them down in the end and had absolutely no problems! Well, maybe a slightly odd feeling in my stomach but that was it. I've just gone up to 15mg and the odd feeling was more like mild discomfort on the day I took it and my face is reddened and a bit spotty.

    I take it on a Sunday just because Sundays are usually quiet, but I'm happy enough with it for now to take it any day of the week. I've heard that it doesn't hurt to occasionally delay for a day or two & at least that means that you have some flexibility if it does cause nausea etc. The folic acid helps prevent ill-effects and I've heard that drinking plenty of water is a good idea - helps flush it through or something.

    Our dog's vet (I'm not sure if this is reassuring!) said 'Oh, Methotrexate - I know how it works and you've no need to worry!'

    I still am worried because this is strong stuff and tolerance of it can change, it can stop working etc. etc. etc. but my experience of MTX is fine so far & I aim to adjust to all these new things that are happening ... that takes time, I think. Incidentally, are you aware that it may be a couple of months or more before you feel the benefit? (I am also on steroids at the moment which makes it hard to know which drug is doing what.)

    I do understand the relief of diagnosis too ... I was struggling for maybe 2 years & just telling myself to pull my socks up. I know now what I'm up against and many people say that MTX is a good ally to have!

    Good luck!

    Christina

  • Hi Richard ,feather and all. Been on MTX for about 6 months and had a lot of sick feelings to start so my Dr said to take a folic either side of MTX,it helped. I too am on prednisolone.....reducing dose(hopefully !!!). Felt apprehensive to start but gradually noticed a difference. You do get the fatigue,but you do with RA(I have polimyalga also) I sadly have to cone off MTX as affecting my liver. So feel all upside down again and ache. MTX was goodii. Does anyone else get extreme hot flushes? They make me feel so horrible. Tale care. X Lynn

  • Hi Richard,

    Glad you are starting treatment at last. You have had a long wait.

    I too was apprehensive taking my first dose of MTX but it was fine.

    I take mine on a Saturday just before going to bed, I had found taking it in the day time made me feel a bit "spaced out".

    Good luck with whatever day you choose, heres hoping it works for you and you have no nasty side effects.

    Mary x

  • I originally chose to take mine on a Thursday, so that if I had side effects I would only have one day of work to get through with them, but they wouldn't have too much effect on my daughter's weekend - that didn't seem fair on her as she was only 9 at the time and doing a lot of caring. As it turned out I've been really lucky and have relatively few side effects. I'm not sure if my ongoing fatigue is part of that or part of the disease. But I have ridden horses again (though not at the moment), so I'm sure golf is not out of the question.

    I take mine at night, with a glass of milk and a biscuit to line my stomach, but have never had sickness. I used to feel scared of taking them, as they get such bad press, but now I down all eight of them in one go and hardly think about it.

    Good luck,

    Suzanne x

  • Hi Richard,

    I sometimes (but not always) have an extreme fatigue day 24 hours after taking my injection. If you have a regular days when you play golf then I would leave yourself a day between meds and golf just in case you need some recovery time.

    Sometimes early effects wear off after a few months but hopefully though you'll just sail through it without any problems.

    There has been some debate about how much folic acid to take. I always take 5mg every day of the week apart from my mtx day but some consultants argue that I dose a week of folic acid is sufficient. That may be something to ask about here also.

    Good luck

    Judy xx

  • Yes, that MTX packet is pretty scary. But it works! And I now down my pills like smarties without a second's thought.

    I'm a Tuesday evening MTX-er, as didn't want to mess up the weekends. And I find taking it about a hour after dinner seems to work best for me. I did have side effects to start with but they wore off, and I've been fine on it for nearly 2 years now. (sadly things are now changing, but that's another story)

    My rheumy told me that its best if you can manage with only 5mg of folic acid, once a week. Apparently it's a catch-22, as it can hinder the positive effects of MTX but you need to top it up as MTX knocks it out of you and without it you get more side effects. So I've been on 1 tab with no problems (again until recently, and have now increased). Happy pill taking, Polly

  • BTW - If you go to the NRAS main site you can find out what is going on in your area regarding local support groups. Or maybe set one up yourself now that you are a man of leisure?

  • Hi Richard, I've been on mtx. for a long while (years in fact).

    I have had no side effects so far on 7.5. I take the folic acid on Monday and Wednesday nights and mtx. on a Friday night after I've eaten.

    When it was increased I had a problem with my liver enzyms rising so was then put back to 7.5 and have been ok so far ever since (touch wood it stays that way) regular bloods are essential so they can check what's going on.

    My OH used to play golf until he was very ill (not RA related) and then found as he couldn't drag a golf trolley around (even difficult with motorised one) he had to give it up and went on to clay pigeon shooting which isnt quite as strenous !

    Of course you could get yourself a caddy - happy golfing.

    Judi

  • Many thanks for everyones comments, very helpful. I have found a group in Hillingdon that I am going to visit tomorrow just to see what it is all about. Unfortunately I have always been a bit of loner. However this site has helped me understand things so well that I think I will give the group a shot and see how it goes.

    I have looked at my social diary (very little in it at present!) and worked out the best day for me so that I am not doing anything very important on the day after.

    I am due a steroid injection in my foot shortly so hopefully that will enable the golf to proceed. I did suggest to my OH that she caddy for me, strangely the answer ended in OFF! Still she does work to keep me in a style that I would like to become accustomed too!! LOL. Good job she doesn't read these blogs HE HE!

    Thanks again

    Richard

  • Hi Richard

    Me again!!

    Did you go to the group in Hillingdon, would you recommend?

    Ronnie of Ruislip

  • Hi Richard,

    I started on 10mg of MTX in April, after a year of symptoms. I was terrified at the thought of taking them, but can honestly say I have had hardly any side effects, Just a very slight feeling of nausea on waking and a slight light headed jet laggy feeling the day following the tablets. I take them on a Sunday night (with a little snack) Chose Sunday as I don't work Mons & Tues so thought if I did have side effects that would work best. I started on 5mg Folic acid on Fridays, this has now been increased to twice a week. Can definititely feel improvement in joints and in overall feeling "better in myself".

    Good luck, hope it works as well for you.

    Caroline.

  • Richard as far as I am concerned Methotrexate gave me back my life I had read about all the terrible side effects, but decided to ignore them and try it for myself.

    I started on 5mg and gradually worked up.I have been on 20mg for a couple years now and had no ill effects at all. I really hope you have the same experience. Good Luck with the golf.

  • Hello again, it just occurred to me that having told you how well I was getting on with MTX I then (today) commented on oldtimers's blog by saying how awful I felt! And that if you read it you might think me either a split personality or a barefaced liar! Well, I do feel a bit schizoid ... I was fine, then I wasn't .... 48 hour headache, no energy & yes, I blame the MTX - I've never had headaches before without the aid of strong drink. I suppose the reality can be that things do change from day to day but you've probably already got that impression from all the blogs and discussions. Hope all goes well, Christina

  • don't worry too much Feather, early days.....I was like that for months and then things settled and I could plan more than a day ahead. I still get new or odd things coming up to surprise me, but generally much more manageable and stable. Px

You may also like...