Blistering Barnacles!

What am I to do? I nearly put this in the questions section but it's rhetorical, I don't think there are any easy answers. Sore, cold mouth & gums (Sulphasalzine? I've been on it nearly 4 weeks), lumps on tip of tongue which started as ulcers, dead small but drive me mad day & night (Mtx?? Ulcers started before the Sulpha) sore, hot hands - now that's RA I think. I'm knackered & queasy, worried about rocketing ESR and other stuff .... I'm trying to live a normal life here but it's not happening.

Gave up smoking & am pleased about that now I've given up drinking completely too because of blood results. The people I would most like to invite round for dinner happen to be drinking, smoking types so I can't face it & besides I haven't got the energy anymore to cook AND talk to people. The spring sunshine offers some respite but otherwise everything has gone a bit pear shaped. I'm not depressed, I just want more gaps in between the miserable bits.

Anyone read the Book of Job???

Hope you are all better than I am. Luce xx

23 Replies

  • Oh Luce - not sure what to say really? Just hang in there - there are plenty of other options if Sulpha proves to be truly Yiuk as it did for me too. How about you dump sulpha and ask to switch to injectable MTX ASAP? I couldn't hack Sulpha - started on it before I had been seen by a rheumy even (GP was that confident) and I had lumps on side of neck, foul taste (yep its been two years now!) and horrible low crushing feeling - all culminated in a total all body phenomenally itchy,purple rash! Lasted all of four weeks. Some people can take these drugs and others can't - MTX was fine for me until Hydroxy messed it up a bit.

    If you read the various remission takes on this site you may notice that injectable MTX and Enbrel both seem to loom large with other anti-tnfs playing a part. There is hope I'm sure of it - and hopefully that will run parallel for your with spring and summer and you'll be inviting smokers and boozers round for dinner without so much as a second glance. I've been so wicked and drunk and smoked and done everything in the past few weeks - am hoping that the reason GP hasn't phoned this evening is because all good but I have a feeling he never took my liver test any way - and I couldn't face asking! Tilda xx

  • Thanks for lovely reply Tilda. I have noticed Enbrel getting the thumbs up & you're right ... injectable mtx too. I suppose that mtx just bombed (does 'bombed' mean failed big-time??) so badly for me so suddenly that I've assumed that sticking it in my midriff bulge wouldn't make much difference. But I've taken on board what you say properly now & WILL ask about it.

    I hope you've enjoyed being wicked & thank you for pointing me at the summer and better things to come. x

  • Least I can do Luce - you always support me and others brilliantly. I wondered about you starting injectable very soon, ostensibly for getting past the mouth ulcers? Then if Enbrel or another anti-tnf is introduced -well you really might be on the best combination of therapies available and be able to get fully on top of things? I pushed my way into injecting because my ESR was still consistently high and pins and needles everywhere and lo it seems to have been the best possible move. If you read up you will find that by skipping the gastric system out the injectable MTX is significantly more effective - not just a small tweak. X

  • well, well done for giving up smoking...and that's a huge change for your body so if it was recently maybe it could have thrown you out of kilter? When I stopped I got all sorts of weird effects.

    I vaguely recall that it did take me a while to get used to Sulpha, not as long as it did to cope with MTX, but did make be distinctly queasy and a touch explosive for quite a while.

    Re Job, don't scrape yourself with broken pottery... But equally don't suffer in silence and phone your rheumy team to ask what they suggest? polly

  • I had hoped exactly that about smoking Polly - gave up over a year ago and it did correspond with a huge improvement in my RA but alas, did not last. My husband is now giving up though which is an excellent side effect!

    I'm going to see what's what when I get result of next blood test - hopefully Friday. If anything at all has improved then I may persevere with Sulpha but if ESR and other things aren't any better then I'll have to see GP anyway & may phone Rheumy team too. I had quite a long problem-free relationship with mtx & can't help thinking that I'm just getting less resilient, more prone to reactions.

    Did Job do that? He was a lad. I read his tale of woe in a hotel room & have forgotten the details but thought it was a wonderful story & it made me laugh which was probably not the intended response. x

  • How are you feeling today Luce? I agree about the quitting smoking being a huge change for your body to adjust to. I don't think you should worry so much about rise in ESR. I'm always being told not to by my doctors so am passing this on now from one worrier to another! Says she who spent some of the night lying here worrying about what my ESR will be up to when I phone for results later! Tildax

  • I slept dead well and that seems to be the one reliably consistent influence just now - good sleep = feel much better, rubbish sleep = feel pants.

    I hope your ESR is okay. Mine is seeming to affect other things now so is hard to ignore e.g. seems to be responsible for intractable & worsening anaemia.

    I do agree - as a general principle not worrying is a GOOD THING.

    I must admit that I have had some lapses smoking wise - confession good for the soul?? But something has shifted now - so few longings! x

  • ESR has crept back up a little - almost alarmingly predictable but it's not a big rise and nowhere near as high as it was before injecting MTX so feeling quite rational and reconciled today. Anaemia probably accounts for quite a lot I would have thought. I do understand - it's the add ons to RA that have been getting me down and blisters up the nose and not being able to drink myself into a nice slur while on MTX are hard to come to terms with I've found - never mind dry eyes, cold hands and disgusting taste! But onwards we go and it's a good time of year for new starts and gentle ponderings - reading lots of books, hiring DVDs and generally looking forward where possible I feel. Hope you feel same way again soon. Tilda x

  • Good! Glad to hear that your ESR isn't too bad. Yep, it's a shame about drink - I think I have been getting more fatigue probably due to anaemia & not wanting to face it & using a couple of drinks to overcome it in some situations. Not sustainable!

    Well it has gone all autumn out there again today but I agree it's the season of hope nonetheless. x

  • Yeah but season's of hope can bring their own misery so I'm not holding you to it. Are you taking iron supplements and if so aren't they working? TTx

  • I've not been offered iron tablets & haven't asked - I always think I'll get better on my own .... but I'll see what happens with next blood test, anaemia's never been this bad before so suppose iron's the next thing. (But not sure if it works when cause is inflammation .... probably, but two Rheumy nurses have said it's something I might have to live with.)

  • Well its common with RA of course although I don't have it - but I don't see why we take supplements such as folic or replace hormones such as thyroxine if hypothyroid but wouldn't take iron for anaemia? I mean no one's saying to me - you are hypothyroid just live with it are they? I got very anaemic during my last pregnancy and no one picked up on it and I was really quite ill after youngest was born and needed daily iron supplements for ages. Tilda x

  • Luce,

    Really well done on giving up the dreaded fags. Your body has had a great shock with that alone. How about treating the symptoms? Ambesol for the ulcers and to rub onto your gums - over the counter med and one I use a lot. What did you drink when drinking? When I stopped I went on to tonic water served with ice and lemon like a proper GT, I even found it ok in the company of drinkers. The blues I'm afraid are not easy but as Tilda says hang on in there.

    All the best and I'm thinking strong thoughts for you.


  • I know you are right about smoking being a shock to the system. Years ago I knew a couple in their 20s who gave up together and both promptly got pneumonia due to the shock!

    I wish I could attribute some things to giving up smoking but I gave up over a year ago. I went 6 months without a cigarette & had no ill effects at all to my knowledge (it is rather hard to tell with RA in the mix!). Then I did lapse to the tune of 2 to 3 a day for a while but back on the wagon about 6 weeks ago. Still .... maybe bod is complaining this time around.

    I must take your advice and find a placebo drink, seems to work for so many people. But mostly I'm missing having a laugh with other people 'cos I'm just too tired to socialise.

    Thank you for your strong thoughts! x

  • Hi Luce,

    It sounds like you are having loads of niggly things! Did u know when u first stop smoking your immune system can go down a bit thus mouth ukcers etc occur. This does tend to pass quite quickly though and using mouth gels help and drinking things like orange juice to increase your vitamin C. But the benefits of not putting thos toxic chemicals into your system will soon appear, so hang on in there! R u going to a stop smoking clinic, they can give u advice on these initial problems.

    As for booze some of the no alcahol beers are good such as Cobra blue. And tonic water for me just has enough zing to it.

    Well done to you and keep going xxx

  • I will try the tonic water - I need some zing! As I've said to others it's hard to see my current niggly woes as non-smoking related. But I take your point about how good not smoking is - I've now sort of accumulated lots of positive thoughts and feelings about NOT smoking and gradually they squeeze out the positive associations that smoking used to have.

    I know that most of my friends wouldn't smoke in my house any more - and anyway they all stand outside their own smoking in all weathers, just like I used to do, madness! Being weary is getting me down though.

    There are options in the pipeline & I know I need to hang on in there - meanwhile it felt good to vent! Thanks for the encouragement. x

  • Hi Luce,

    Just a thought...ibuprophen always causes me to get ulcers in my mouth, throat and esophagus. I never use it anymore. Hope things get better for you.

  • Hmmm, that's one to think about as I've been taking more Naproxen than usual - it doesn't seem to do much so was going to ask the Rheumy nurse if I can stop .... thanks! x

  • Hi you well done for not smoking its no mean feat. I have done it myself it was hell !!!!!!!!! That was ten years ago and still i remember. Sorry i am late to commit afraid work gets in the way. I take salfas i to get dry mouth and extreme fatigue.

    So wish i didn't have RA thats life !!!!! xx

  • You sound like you are getting on with life despite the flipping RA! Thanks for the encouragement miss. x

  • Your welcome x

  • well done for giving up smoking.


  • Thanks, my husband is giving up now which might help prevent any relapses!

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