Newly diagnoses and about to start mtx .. needing some advice please

Hi everyone, after just over 2 yrs of symptoms I've finally got a diagnosis, well nearly ... I was told 2 months ago that I definitely have inflammatory arthritis and that it is either RA or PA but apparently the treatments will be the same. I've a history of psoriasis in the family and have some psoriatic nail changes but, to cloud the issue, my RF is mildly positive, it was negative at onset but within 6 months changed to positive. The rheumy says its mild, which is good, although I have to say it doesn't feel like it! When I saw her in May she left be on Naproxen only, no dmards as she said she would wait to see if there was any erosion before putting me on anything stronger. Personally I'd rather stop the erosion before it happened!! The naproxen managed my symptoms well for a time but the effect has worn off and I'm in a bit if state. I saw my Gp on Monday who was unhappy with the rheumy and was gonna write to her. I spoke to the rheumy nurse who sounded very surprised that I wasn't taking anything else and said this would be looked at when I go in. My rheumy appt has been brought forward to 25th July and I'm fully expecting to start mtx at this time. I have to say I'm quite scared at the prospect and also a little dismayed that I won't be able to enjoy a glass or 2 of wine at the weekends, although this is obviously the least of my worries. So, right now, apart from the pain in my shoulders, wrists, some knuckles etc which is not good the worst bit is the fatigue and I just can't cope with it. I have 3 children and work 4 days a week and I feel ill with tiredness most of the time, it's like being pregnant all over again!! I know the mtx will hopefully do its stuff and stop the erosion that I fear so much, but will I be swapping one set of symptoms for another with the nausea etc? If the mtx works will it help with the fatigue as well as the pain? I would so appreciate anyone's thoughts and advice please ... But in any event enjoy that scorcher of a day that's coming tomorrow, it's been a long time coming!!! Thanks everyone xx

15 Replies

  • Totally agree that better to stop the erosion before it happens, rather than try and fill in the holes later. But apparently some people do get a non-erosive type of RA, that hurts but doesn't do as much damage as the very aggressive ones. Still, better to prevent it. But really don't worry about MTX as it's absolutely fine for most people and just the unlucky few that never get on with it. The first few weeks could be odd, and certainly don't drink to start with, but I found the side effects wore off, and now I can have a drink now and then without my liver reacting badly. But it's given me my life back, so I think it's a wonder drug. If I look after myself properly, eat well, exercise and get enough sleep, then I'm just fine most of the time. Hopefully you will be too. Pollyx

  • It is a wonder drug, Polly is right, but it's also too much for my pathetically intolerant body to take in the higher doses I seem to require to keep RA at bay. The very good thing is that you will be closely monitored on MTX or Sulphasalazine - so if - after a period of your body getting used to it - you find that you can tolerate it well then you may also find that your liver will allow you a few glasses of wine a week too. It does work very well for RA and PsA but I'm not sure why on earth your rheumy felt that Naproxen alone would be enough if she diagnosed you with PsA or RA? And to say that she would wait for signs of erosion is bizarre to my mind.

    I often feel my RA might turn out to be PsA although I don't have a history of psoriasis - but I do of eczema. I too have a low positive rheumatoid factor but the one that's more specific to RA is anti-CCP and mine is negative so that makes PsA more likely so I've read. I hope your appointment later this month goes well and you get put on a treatment that works well. With three children to care for you need your inflammatory arthritis halting in it's tracks. Tilda x

  • Hello and welcome, I have PsA and my nails are pitted and lifting, do you have any signs of Psoriasis elsewhere on the body? It does help when they come to diagnoses, well it did me along with all the other tests that they do.

    On diagnosis I was placed straight on MTX 7.5 mg. moving swiftly up to 25 mg with other meds added into the mix. But am now on ant-tnf. As Polly said you will get used to it and once your medication is working correctly and the blood tests are normal and you will find a time when you can have the odd glass of wine.

    At the beginning if I was out with other people and they were drinking wine I used to ask for a J20 juice that was coloured red/black and asked for it in a wine glass, not the same but the eye saw a wine glass. It helped, now I only have a very small glass on special occasions. I find that my level of tolerance is not what it used to be. Also if visiting a cocktail bar I have all the ones without the alcohol in them, still refreshing.

    Hope this helps, plus they get you on the correct meds soon. take care. xx

  • Well how lovely to get some really positive feedback and hear some good stories rather doom and gloom!!

    Hi Polly, yes I think my rheumy left me on the naproxen because she thought my RA / PA was a non erosive form but I'm not sure how they can tell if that's the case. I'm so glad mtx works well for you and I really hope it does for me too :)

    Hi Tilda, sorry you don't cope so well with the mtx. Yes my anti CCP is negative too most of my bloods never show much, my crp is only slighted elevated. I'm due to see the consultant on 25th as previously I saw the registrar do hope my appt is better thank you.

    Hi George, no other signs of psoriasis anywhere else, just toe nails, its all very strange. I like your idea of tricking yourself with the wine glass!!

    Last question for you all right now please ... So, see rheumy on 25 July and assuming he starts me then on mtx I would take my first dose on monday 29th as Mondays would suit me best. I'm going on holiday on Sunday 11th August, we are going camping so I'm really looking forward to chilling in the evenings and having a glass or 3 most nights (I'm truly not an alcoholic!!) and having some quality family time. I really don't want to be feeling sick or unwell and not enjoy my holiday. It's the only break we will get this year. I might start the mtx and be fine and the sooner I start the sooner it'll give me some relief, but I'm gathering the first few weeks can be tricky so I might be feeling awful. Should I delay starting the mtx til I get home? Could I take the first dose on 29th to see how I am afterwards and if I react badly stop taking til I return?? Really not too sure what to do. It's more important that I feel well even if I can't drink ... there's always chocolate after all!! Really would appreciate your thoughts and views, thanks so much. Rosie

  • Your rheumy will probably start you on a low dose, and then increase it steadily. I started on 10mg for the first 2 weeks, then had a blood test, and then increased by 2.5mg steps until I got to full dose. So you might want to discuss whether doing something similar would mean that you could start without risking your holiday. But would mean giving the alcohol a miss! Some people seem to get started on a big dose straight away, but I found the gradual introduction made it much easier for me. polly

  • Hi Polly thanks for the advice. I know you can get mtx in tablet or injections, is either better for side effects ? I wouldn't be worried at all about injections as I had to use them daily thru 3 pregnancies, so if they were likely to be easier on my system wondered whether it would be worth asking for them? Thanks Rx

  • I started on tablets, and then after nearly 2 years swapped to injections because of side effects suddenly popping up (mouth ulcers), and found it easier to handle once I'd got over my needle phobia. It seems a lot of people do find the injections work best both because of fewer side effects and also as it is absorbed directly so more effective as you don't lose some in the digestion process. But it will depend on your health authority as injections are more expensive. I think difference is between approx weekly £5 tablets and £16 injections, so my health authority doesn't encourage injections unless you need them. Px

  • I used to take mine on a Friday night so that I had the weekend to recover before work on Monday. It depends how you want to play it yourself. The only side effect (if so called), was that I felt ill and listless that night then went extremely cold, but had normally recovered by the next day. I was advised by the consultant to take it on the Friday as I have IBS-D and it can sometimes upset this, so for me it was more pre-cautionery rather glad I did at times.

  • I have been taking the injections for five weeks now, and find that the next day I am more tired than usual and a bit dizzy, but nothing I can't live with. I started straight away with the injections after hearing they were easier to tolerate since they do not go through the stomach. After getting over the initial shock of taking injections, I find they are really quite easy to do and practically painless.

  • Hiya. I started on MTX about 8 weeks ago and have been slowly working up to 20 mg which I am on now. Absolutely no side effects at all from the MTX as far as I can tell.

    Can't really tell if it is doing its job yet as only just finished a course of oral steroids which really calmed my joints down. Time will tell. But right now feel fine apart from occasional fatigue.

    I was worried about the alcohol thing too as I do like a nice glass or three of wine, but I really truly haven't missed it at all. I feel extremely virtuous which is giving me a great feel god factor and no alcohol means I have lost a bit of weight I think!

    Maybe they could start you on some steroids for your holiday and then start the MTX when you get back?

    Sally x

  • Wow it's so good to hear so many good experiences, thank you.

    Joey did you have to ask to start straight onto the injections, was it recommended for you as it sounds like quite a good way to go.

    Sally, yes someone has mentioned to me the possibility of an intra muscular steroid injection which I gonna try to find out more about. I've had oral steroids before but unless I really slowly weaned myself off them had a real crash when I stopped taking them.

    My the way does anyone know why this forum keeps logging me out?? Every time I look at it, I'm not closing the window down, I have to log in again its a annoying!!

    Thanks Rx

  • My doctor gave me the choice, but preferred the injections. I am quite happy with the decision. (And I am guessing by our mutual screen names we both have a little long eared critter hopping about?)

  • Hi Joey, yep you got that right 2 x 1 yr old mini lops and 2x 3 month lion heads. They are my daughters and are very sweet. You??

    I think the injections sound like a good idea, I've just started getting some gut problems from the naproxen I'm taking so mtx would probably just further exacerbate that. It does seem that there a less side affects from injections.

    However, typically, I've been having a bad time of it, brought forward my rheumy appt to this Thursday and now are settling down. I'm gonna feel like a fraud when I go up to see him and I hope he doesn't think I've been making a fuss about nothing!!

  • I just have one mini Rex. But she is baby and I spoil her like crazy!! I have a friend with a lion head and we act as each other's bunny sitters.

    I was taking Naproxen before starting the injections. it did help the inflammation, but really started aggravating my stomach. I find doing the MetX shots quite easy on the stomach. but I still get tired and dizzy. It's interesting that I have been wondering all day if I should ask my rheumatologist if my dizziness is "normal" for a side effect or not, but I don't want to seem like a complainer. I know it is easier said than done, but we all have to learn to speak up and not be so afraid of annoying our doctors. these medications are quite serious, and we deserve to be listened to.

  • There aren't many benefits of RA, but one for me has been that I've learnt how to be (politely) assertive to the docs and much more confident about speaking out. It's not complaining, that's what the docs are there for and they're not telepathic will assume all's well unless you tell them that there are some little problems. So do ask! Felling dizzy can't be too pleasant. Polly

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