Feel like driftwood.....:( please let me know what you think? x

Friday: I ended up on the Ward and had to stay the night. Surgeons have conflicting views. One things MTX and Sulphasalazine and other thinks gallstone left after op near cystic duct is the problem. So getting an ERCP :(

Wednesday: Rheumy nurse wants retaken ..she has spoken to Rheumy doc and they have taken me off Sulpha.

Thursday GP surgery says..blood is fine take all the tablets as told...so again phone Rheumy nurse who phones straight back..told me NO to taking the drugs until they have a new blood test.

Today.......bloods done..told them about the Sulpha stopping...they said they need a letter from the Rheumy nurse OMG...

So the end result is..not on any medicines...very sore and worried about the ERCP. Have these guys not heard of phone calls or maybe the internet..:(

Sorry for the rant ..xxxx

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  • Rockpool,

    You have a good old rant, I'm sure there's plenty of us who will join you. It's ridiculous, no one talks to anyone else so nobody knows what's meant to be happening and we are in the middle.

    I hope your rant made you feel less stressed, sorry to hear you are in a lot of pain.

    Hope they get themselves sorted out and you get some relief.

    All the best

    Mary x

  • Thank you Mary...yes it was a bit of a rant..sorry :o but it does feel like they all don't speak to each other..so sad. It is our body for goodness sake. I actually said that to the nurse today. I hope they sort out this gallstone which seems to have become annoyed by the tablets :/. thank you Fiona x

  • Blimey, I wish I ranted the way you do: very factual & measured with just the occasional OMG! My family would be so relieved!

    It's just inefficient and chaotic & every time you get contradictory answers to questions someone must be giving you misinformation so that's their time & our money wasted. And you are sat there, worried and in pain .... rant away & hopefully it'll help.

    I know that these muddles generally do get resolved and I hope that's soon. Meanwhile, if I were you I'd make sure I had everything that's happened, including the professionals' differences of opinion and how that's left you without medicine and very worried, written down super-clear in bullet points.

    And then in your calm and measured way, let 'em have it on Monday morning till someone takes responsibility for the situation and helps you.

    And I hope you have a lovely weekend despite all this, Christina x

  • Thank you Christina..it is hard ..only been diagnosed 4 weeks and it feels like a lifetime already. The messing around between departments is nonsense and has got on my nerves. I will hopefully find out more on Tuesday to get a jab and a chat. Have a great weekend too xxx

  • I've been diagnosed for 2 weeks & I'm the same - it does feel like much, much longer ago, it's quite odd, really .... Good luck next week x

  • It is awful isn't it Feather..feeling bad enough to get the news had a major tantrum and now have a really short fuse as far as people not understanding what RA is. I hope things settle for you too..take care xxx

  • Poor you Rockpool. It's so hard when all these health professionals just drag their heals and only consider their own specialist area. I asked the GP about my gallstones in relation to the sickness I've been having but she said no it would be intensely painful. And to be honest that's how it's always been for me to date but I did wonder if my pain threshold had dramatically altered since RA perhaps.

    But I trust her hunches because she diagnosed gallstones to begin with and sent me for a scan. Can't you get your GP to be the person who ties it all together for you as otherwise it's exhausting having to do all this yourself when you are unwell? If it were me I would speak to my GP and tell him (or her) what was happening and get them to orchestrate it for me. Mind you I say that but I'm still the one who phones and finds out when my next rheumy apt isn't going to be and who researches medication and goes into the GP and asks for it! But he does then email my rheumy for me and then phones me back eventually - but it's a very convoluted way of doing things and often by the time its all been resolved everything has changed!

    Maybe your gallstones would have kicked of regardless of the drugs you are on for RA but they are powerful and I guess if you are to have your gallbladder removed and the stone located and removed too then you probably couldn't take the DMARDs anyway as your immune system will be too compromised?

    I dread my gallstones kicking off for this very reason. Hope it all comes right soon for you it's hard enough being diagnosed with RA I know.

    Re the responses and ignorance of others - for me that's been one of the biggest hurdles and I have all but given up trying to explain to people why I'm always tired or feeling sick these days. It was almost easier when I was hobbling and wearing splints as people would rally round but they don't have a clue how horrible our medication is either and that's half the battle for us all. TTx

  • Hi Tilda It is so annoying isn't it. I was a very lucky lady in Jan 2011 as my gallbladder ruptured and had septicaemia. This is a 7mm gallstone that seemingly has been left in my cystic duct. It has not caused me any trouble until I started the Dmard's :(. So feeling pretty fed up with it all at the moment. As you say it is hard enough to be told you have RA and getting my head around things. Have found I don't say anything at the moment if people or friends ask as they always have some useless comment or change the subject. Keep those stones quiet.

    Take care big hugs xxx

  • I know all about other people - have found that it's best to shock those who say stupid unhelpful things and leave the res of them out of it where possible. If you want to shock then say rather lightly that you were put on a chemotherapy drug that is so toxic that they have to test you once a month to check your white blood cells and liver.

    So the people they know with "a bit of arthritis" - do they have to take these DMARDs too and give up booze and feel sick, face potential hair loss etc? I only say this to people who really annoy me though as it's a bit OTT. My real friends would never dream of proffering stupid advice re diets and light weight remedies! And as I've lost over 3&1/2 stone since this all started that's a good way of keeping people from being overly sensorious about lifestyle adjustments as it's a visible change (and great improvement) at least. It's so hard to come to terms with it all without also becoming a health bore and driving people whose support you need away though. I think I'm coming out the other end of this stage now after 7 months (18 months since it all started though) and am getting used to pacing myself better and not thinking about RA 24/7. Tilda xxxx

  • I have lost a lot of weight too and get comments about that...usually 'lucky you..weightwatcher?' cheeky buggers or another..when you say you are not on a diet....you must be worried incase it is cancer OMG.

    I have started calling it an auto-immune disease...and not arthritis...haven't been asked if it is AIDS yet lol...been given diclofenac to keep the inflammation down until I can start my meds again. I feel I have had my tantrum and now going to take each day as it comes..very hard for a planner person like me..hey ho..got OU homework to do ..Have a lovely Saturday..xxxx

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