Fed up

I'm fed up with years of ongoing illnesses and the way some of these rheumatologist appointments are a long wait...then we you have an appointment it's never straight forward then it's another few months...I'm not a straight forward diagnosis even though I have a diagnosis of sero positive RA and secondary sjorgrens....I've never been able to tolerate any of the dmards..(they are worse than the actual disease for me)..reacted badly to everyone....my consultant tells me I'm a complicated patient...

I've had numerous tests scans blood test over the years....

I'm now in the process of having my DAS counted so on my next visit which is three weeks time hooray :-)( probably be in desperate need of a steriod injection by then) this will be my second DAS score then next step to see if I qualify for Biologicals...but again I may not go down this route...

I've been off all medication since January 2014..

Luckily I'm not too bad at present but just as well as my consultant hasn't a clue what to medicate me with but then he says I'm in desperate need of some drug to slow my disease down...yet it's a waiting game....as hes not sure what to do next....

I feel like I'm going around in circles. I made an appointment with my local doctor bless her last week to see if she knew what the rash on my face was and she asked why has the rheumy nurse / doctor not looked into it. She understands im not a straight forward patient but asked me why if my consultant can't look after me...why has he not referred me on to someone who maybe can..she kindly wrote me a letter to give to my nurse for my next appointment to see if anyone can help me else where...We know there is a consultant in rheumatoid arthritus and sjorgren syndrome in another hospital so maybe he may help me and have answers as to what drug I take next....haven't a clue how long his waiting list is....

My local doctor seems to think I've gone around in circles for too long now and my rheumy department haven't got the time to see me...as yous reading this will understand...a waiting game ...waiting appointments...but if they can't help me then they should be moving me on to someone who can....as its not fare on them or me...

Ooh I'm having a good rant today...but I feel fed up and maybe scared as to what I can take in medication ??? And find out whats going on with my immune system..

Hope someone can help me...as all you who understand know this is a very long journey...

Thanks for listening Nicola :-) xxx

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20 Replies

  • Thank you for your reply I'm having a feel sorry fed up day with myself...it does us good though to have a good blooming rant sending you hugs too take care xxx

  • Sending hugs, I hope your appointment will give you the answers you need. xxx

  • Thank you Sending you hugs....I'm hoping my next appointment is a way forward....xxx

  • You poor thing (and not discriminating either), is there anyway you can get your appointment brought forward by calling the appointments and asking to be put on the cancellation list to be able to get there sooner, but still keep you original in case you are not see sooner?

    I do hope that your DAS is high so that you can go for a biologic as it may help you. xx

  • Thank you for your advice. I'm going see if I can get in earlier to get things moving a little quicker thanks xxx

  • Oh Nicola,it is so hard isn't it being pushed from pillar to post. You can rant anytime you like my friend. A big hug from me to you. Sylvia.xxxxx

  • Ahh thank you Sylvia its lovely to have your support sending you hugs too xxxxx

  • Hi Nicola,

    How are you now? As Georje says, sometimes it does help to ring and say that you are anxious that no treatment programme has been set up. It's can be a bit like a nightmare game of monopoly where you keep getting sent back to GO and never quite get round the board. Be persistent - a letter expressing your concerns wouldn't do any harm either. Judy xx

  • Hi Judy your right I feel like I'm on that game of monopoly good way to describe how I feel...thank you for your support xxxx

  • Hello Nicola

    We all rant and chew over treatments, then we again wonder why we bothered to build our hopes up.

    It is thirty + years now that I began this weary journey and believe me I feel sometimes that if a magic bullet could be found. we would still discuss our conditions as RA illnesses just seem to continue going around and round

    With RA type conditions the medications are quite unpleasant and I still cannot understand how sometimes we wish to try another one that can make us feel worse than the one before.

    So welcome to our happy, friendly band of RA type illnesses, we all need support and encouragement. as many would go mad if this site did not exist

    All the best


  • Thanks Bob your right...I don't know how I would cope not been able to rant at people who actually understand what I'm ranting about...thanks for your support Nicola xxx

  • Hope you feel better today. It's all the waiting that produces anxiety isn't it? I do hope something positive happens soon. Thinking of you. M x

  • Thank you your right its the waiting and not knowing makes us worry...sending you hugs thanks Nicola xxx

  • So sorry you are having a tough time it is sooo frustrating I too am in the same position as you I have tried everything and nothing works having yet more tests and scans and yet another winter without drugs...I find it hard to believe that we have to suffer so much. Sending you a big hug I think you really need it x

  • Ahh thank you....your right its so frustrating and also scary as to what we have to suffer...and what medications are going to work...let me know how you get on with your tests and scans...I said exactly the same as you another winter without drugs....sending you hugs too take care Nicola xxx

  • Hi Nicola

    Sorry to hear you are having a difficult time. I have had RA 20 years and I have leant the hard way that I have to report all flares so that the experts decide best course of action and also that you have to fight to get what you need and don't be affraid to chase things up. Those that shout the loudest get what they need.

    Your situations sounds just like me several years ago. I was on tablets and not doing well at all. My rheumy professor decided to assess me for Anti Tnf when they had just become available ( 2002 I think). I started on Etanercept but it didn't work, then I had Infliximab which worked well but then I got some nasty side effects. I had one injection of Humira and had an allergic reaction to it. I had no other treatment options. I didn't even meet the criteria for any clinical trials. I waited 15 months on high doses of Prenisalone until finally Rituximab was licenced. I had my first cycle in 2007 and am doing much better. I don't think anyone takes one treatment for life, for whatever reason treatments either stop working or our disease progresses further? Yes it's a stressful time and I know I for one worry about how the waiting is affecting me physically and mentally. I also find stress is a trigger for flares. I hope you get something sorted soon. Also remember if you don't get along with or trust your rheum doctor then move and find another. It's too important not to. I wish you well. Keep us posted on your progress. Love KiKi x

  • Hi thank you so much for your reply....it's great to hear from people like yourself who have been there and gave me great advice

  • By the way Prairie

    I also have a rash on my face. I panicked when it first appeared as I thought maybe I had Lupus but rheumatology got me in to see a specialist rheum dermatologist and he diagnosed Rosacea.

  • Hi thanks for your reply...where do you get rosacea on your face... is it all over...and does it look like hives...is it itchy....and does it keep coming and going...my doctor specialise in skin conditions and she thinks it might be my immune flaring...not sure...Nicola xxxx

  • Hi Nicola my rash was worse in the sun. I emailed a photo to my Biologics nurse specialist and she arranged the appointment. It was like hives yes all over but now only over the bridge of my nose and around my nose and my chin. I use a Clinique product called city block which is SPF 40. I wear it everyday and it keeps the rash to a minimum. It's 2.5 years since I was diagnosed with Rocacea. I believe it's çonnected to my RA but the dermatologist said not. My triggers are sunshine, alcohol, spicy food and stress.

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