Hacked off

So today in the post I receive a letter from the hospital cancelling my appointment with my consultant in three weeks. I have been waiting for ages to see him and I knew as soon as I saw NHS on the envelope what it was. I am so hacked off, I am really suffering at the moment and really need to see him to get my meds sorted and this stupid disease under control.

Since having to come off mtx in Nov my RA has been very active and not responsive to Leflunomide which I was subsequently put on. I am on a low dose and they won't increase it becasue of raised liver levels.

I'm living on painkillers and totally fed up. The letter today just tipped me over the edge and I had a good cry (pathetic I know). I feel like I've just gone backwards and now am back to where I was before being diagnosed. I can't do everyday tasks, I can't squeeze the toothpaste, wash my hair, turn the ignition in the car, I can't even walk the dog as it's too painful on my wrists and hands. I really really hate RA.

I know there's lots worse off than me but today I just feel rotten. So stuff the disease, the meds and the rest of it, I've just openend a bottle of vino and might just open another.

Thanks all for listening and cheers xx

20 Replies

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  • That's awful. Just noticed you live near me in the other garden city. Is that the QE2 that cancelled? And if so can't you ask to get one at the Lister or somewhere?? It's worth a try. Ring the appointments dept.

  • Yes thanks, 'tis the QE2/Lister and I am going to ring next week as I can't cope much longer.

  • I know the feeling. They (tried) to cock up my appointment last time, but luckily I kicked up with them and they sorted it. I have a good relationship with the consultant at the Lister & the nurses who I have just started to see. So good luck. Let me know how you get on. Message me if you don't wat to put it on the blogs board. Stuart.x

  • Oh Mags i too couldnt tollerate mtx then leflunomide did nothing for me even on the high dose, subsequently consultant made the decision for hydroxy only (strange decision i thought). Im taking it but getting progressively worse and next appointment is April.

    Only thing that has helped me a little is the starflower capsules. Didnt think it could hurt trying and it does damped the flares down a little.

    Take care & i hope you get your apointment sorted out.

    Jo

    Xxxx

  • Thanks Jo, I'm also taking Hydroxy but I don't think that has much effect. I might look for the starflower capsules -it's worth a go so thanks.

    Had one glass of wine and that was enough - what a lightweight! X

  • There's nothing pathetic about crying over it! Do you have a Rheumy number to ring to bring things forward? If not, I'd make a song and dance with GP to see someone at the hospital. I've just had my review & they have plenty of keen SHO's who want to get into Rheumatology. Do you have walk in centres where you live? Go in & explain that you have difficulty in dealing with the pain and problems with articulation; they'll soon refer you back to the GP that you'll be seen straight away. I've never, ever forgotten how bad I once was: I couldn't wipe my own bottom or wash my hair. Please kick up a stink about wanting to see someone, it's not on to suffer.

  • Hello Mags, Do you have a HELP LINE that at you could call at the hospital to help you,

    Sorry your having such a bad time ,try not to stress it will only make things worse i know thats easier said than done.Call the hospital to see if theres a possibility of a Cancellation appointment

    HOPE YOU GET ALL THE HELP YOU NEED SOON.

    Pat

  • Itried to have my 2 coronas of the week tonite and had to stop at 1& 1/2. so im the same mags!!

  • Well I just downed 3/4 of a bottle of plonk no probs and don't care if my liver shouts on Monday when next blood test is because drinking on a Saturday night has become my new way of dealing with the horrid taste in my mouth from my DMARDs! I completely relate to your feelings over appointment cancellation - its absolutely horrible when we have something all planned for and much anticipated only to receive a cancellation letter. Up here you don't even get that courtesy usually - just find out when you are passed over or get an apt letter a few weeks beforehand. If it were me I would go and see GP and explain how much pain you are in and I'm sure they will lobby on your behalf. Good luck - I really hope you get to see a consultant very soon. Tildax

  • Oh Mags. Sorry you're going through it at the mo. Pester, pester, pester you're rheumy nurse! Hopefully they can see you sooner than later.

    Sending lots of 'cyber' hugs your way.

    Love Janet xx

  • I got cancelled three days before the clinic last time, so know how your feel - I was pretty much in the same state too.

    Go see your GP and get them to contact the clinic and try and push an earlier appointment if your meds aren't working properly or well enough. They should be able to push the urgency a bit and give you slightly more priority.

  • Same here Mags , first April ,then 2 in May now mid June ...... Haven't seen

    My consultant since 2011 lol , it's Jokes ......... I'd rather see my wonderfull Rhumi nurses there more helpfull.

    This was at lister and Hertford Nhs, think my consultant needs to top up his tan .

    I so felt like you several months back,then MXT did kick in I don't feel as bad,i do suffer with sickness,I'm baring with it as there in process of changing my meds, guess thats not happening now till June ?even though i was told it would happen by Feburary , but it seems we are all suffering bad flare ups , this time of year ? Seems strange as I like the cold ,the heat normally sets mine off.

    Hang in there Mags, we all offer you support .

    Soft hugs to you

    Angie xx

  • That just sucks, I really feel for ya, give em hell

  • Oh nightmare. I count the hours till appointments!! I would call the helpline of the hospital and explain you r in too much pain and could u see the nurse. If she sees u and feels you need to see the doc she will arrange it. But you also maybe need to up your painkillers for a bit and take them regularly too as you sound to be suffering a lot. My GP is great for that and gives me what I need at the time to deal with the symptoms. It's so awful waiting for the drugs to work ,I have last count of how many I have had and I am just unlucky they haven't hit on one that helps yet, but started Humira a couple of weeks ago and m sore but using my tramadol or morphine depending on how severe it feels. I too am hoping in three months to see a difference, keep strong mags there light at the end of the tunnel! Xxxx

  • All the best with the Humira, Allanah. It may take a while, but you surely will notice a difference. To reconfirm your advice to Mags, nobody should cheat themselves out of some relief by not taking the pain meds regularly. Before the pain has time to dig in. Then it just takes longer for the drugs to work. My Rheumy tells me to take them every 4 hours, sometimes they work so well , I forget and then I'm hurting like hell at 6 hours! Loret xx

  • That's alfull hope you get another sooner

    Gentle hugs Karen x

  • Mags i am sorry that they have cancelled your appointment,i too would have had a good cry so don't worry about it. Sometimes it takes a good cry for me to let go of all the frustration. Today is such a day,but we will live just somedays i wonder how. You keep on at the hospitals. If that doesn't work go to a&e and see what they can do to help you. Hugs to you.xxx

  • Mags, Isn't it wonderful to have so much support from other readers and sufferers like you. I just wanted to add my tuppence worth to hope that you find peace and freedom from pain by working on the suggestions from your friends. Hugs,XXXs Zannie.

  • Mags, can you go see your GP so they can see exactly how you are then ask your GP to do a letter of support to the hospital saying you need your appointment now rather than in a month as you are very compromised. Mine has faxed an urgent letter to my consultant's PA recently to do just that. Also as suggested, phone the Helpline, if you have one and tell them every day you wait is too long as you are in need of seeing the consultant, etc now. It is not being dramatic or anything, just telling the truth. I would be exactly the same if they cancelled my appointment. I have cried more times lately than in the 17 years I have had RA. Frustration, pain and generally being exhausted gets us that way so it is allowed. Hope you get sorted and feel better very soon.

    NK ;-) xx

  • Ask your gp to refer you somewere else urgently in same are if possible?

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