Hand pain and what to do about MTX this week

Hi - I'm getting some serious pulsing waves of pain through my knuckles just now - both hands are swollen but the right far more so and same goes for pain. It is very much the way my RA started - these waves of quite shocking deep aching pain that only last a few seconds but are increasing in frequency. The swelling seems to relate directly to the heat and if I've walked any distance hanging my arms down by my side I can hardly close my hands at all they are so puffy. Is this RA inflammation or a kind of fluid retention do you think?

Second question (bearing in mind the first). I take MTX by injection on a Tuesday night and for the last two Wednesdays have had the runs. Not that my body has even announced this to me until I go for a pee and then I find it's happened (sorry if too much info but I do need help!).

I'm currently holidaying in a very hot Cornwall and this Wednesday we have someone looking after the dogs so we can travel about without having to worry about them - planning to visit the Eden Project and Falmouth, where my OH and I met as young art students many moons ago.

As some of you will know I've reduced doses of injectable MTX to 12.5mg and this side effect is a new one for me - it seems to have replaced the usual nausea. I really don't want to ruin my Wednesday by having to stop off at public toilets every ten minutes to check - and in this heat it will be hellish as it was in Edinburgh last week. I have to drive our car back to Devon on Saturday as mother-in-law needs to be driven by my OH so I'm a bit nervous of my hands getting worse but they are passable for most stuff just now as long as I run them in icy cold water regularly. The rest of me is a little cranky but nothing I can't live with. Am I likely to flare up for one week off? Sorry such a convoluted question but I'm a bit addled by too much sun and mother in law!

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9 Replies

  • Hi Tilda,

    Before I got RA when I was out walking for a long time my hands would swell and more in the warmer weather, I always just brought my arms to shoulder level and clenched my hands into fists half a dozen times just to get the circulation going again, just as you would with your ankles on a long car journey or flight-our hands are no different. And also, running under cold water, or a stream,or the sea.

    So I think you are right when you suggest that this is the hot weather rather than RA.

    As for your MTX , how about changing the time you take it, rather than at night take in the morning, or simply delay till the following evening that will allow you to enjoy your Wednesday

    Hope this helps

    Katie x

  • Thanks Katie. I agree it is mostly the heat but they are already swollen at the knuckle so that's where it goes for. I do try and lift my arms and wiggle the fingers but I am completely unable to clench my fists these days. When hands are swollen in this way I can hardly even flex them because it's all in my knuckles - been the same every morning for at least 18 months as they stiffen too. They are okay in the car because of the air conditioning which dries the air out.

    If I switch to Wednesday for MTX I think I'm then stuck with Wednesdays and that wouldn't work so well when I return home. Also we have two days without our dogs on Tuesday and Wednesday to go and explore the Tate St Ives and Eden Project etc so Wednesday is just as bad. I think one week off won't be as potentially disastrous as it would be to inject probably but I'll keep thinking on it. I may try and find a pharmacy and ask them if I can take Immodium for this problem just on Wednesdays - that may be the answer. X

  • Thanks that's good to know. I just want to check it's okay with Ranitidine because I know both are used for the tummy. I just hope I can locate a pharmacy because we have friends coming for the day and we really are in the most secluded place - a warren of little lanes with tree tunnels and I won't have time to get to anywhere larger today - too busy prepping for the barbeque! XX

  • I took my MTX at 10 and then 11 day intervals once last summer, to get me through a problem time. Sort of 2 injections when I should have had 3.

    I know that MTX stays in the system a while.

    I wonder if any other chronic illnesses cause these sort of additional stresses. I sometimes wish I could have a day off from this disease and be "normal", whatever that is!!

  • I was going to suggest Immodium too, any Pharmacist should know if you can take it. My hands have always swollen up in hot weather if I walk a lot, but it is much worse now I have full blown RA, they are particularly bad in this hot weather. Walking with your hands in the air for a while helps, and stretching and flexing your hands to get the fluids moving can help a bit too. I find it eases off fairly quickly once I'm resting.xx

  • Its very easy to get fluid balance problems in this heat, and contrary to popular belief, drinking too much plain water isn't that good for you as it can contribute to electrolyte imbalance (when it washes stuff out of your body, including sodium, far too fast) - try adding bit more salt to your diet than normal - even just whats in a standard packet of crisps is good in this heat. Also alternate plain water with water with things in it (even just adding a pinch of salt and a quarter tsp of sugar to a 500ml water bottle with a splash of lemon juice can help avoid dehydration and stop fluid collecting in your body in the wrong places). Soda water is something that I can't drink under normal circumstances, but in this kind of heat one can (or the equivalent) of soda water a day keeps your sodium levels from being depleted. Also just things like "juicy water" or those mildly flavoured drinks can be alternated with plain water and keep your mineral balance right.

    This kind of electrolyte imbalance can easily give you the runs - the possibility is that your MTX day has just been the last straw when your body was close to being "out of balance" anyway.

  • Thanks all. I got some imodium off my mother-in-law (she has her uses it seems!) and phoned my local pharmacist back home who said I could take Imodium with MTX and Ranitidine - I was fairly sure but needed to check. Hand swelling seemed less today although I never had a long walk and actually I've had several juice and soda water drinks so maybe that is helping. An old friend who visited today asked me to show her my hands as she lives in Italy and has suspect RA/ OA. She said she found my right hand quite shocking - she could see that my fingers were all drifting and twisting round so that the nails all face away from my thumb without me saying a word. This seemed to relieve her about herself but it didn't relieve me much! So I will take my Immodium tomorrow morning. I told my friend that I'm so fed up with this idea that the drugs make everything very much easier for many of us. For me it's just a matter of exchanging one sort of hell for another and at the moment there seems to be a lavish slosh of both types of hell. Hopefully the Imodium will sort out the MTX tomorrow night at least. It's daft to dread something so much and to have to plan a whole week of holiday activities around it but there we are! I can hack MTX at this dose but just not on holiday. Tilda xx

  • PS and I've got a rheumy apt on the 1st August and my DAS being done the same day just before I see my consultant.

  • Is that the date of the next clinic?

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