Worst ever flare & no support from hospital, need advice!

Hi there,

First time on here but got to the point where I need advice off other people in my situation. I have had arthritis (rheumatoid) for 9yrs I'm now 27yrs old. I take 6 500mg tablets of Sulphazadine every day with 2 celebrex also, this has never been changed throughout the 9yrs.

Usually I get the aches or odd days especially in winter time when I struggle, however 10.5 weeks ago a flare up occurred. Ever since then I have been unable to move my right wrist, I've had to use a wrist splint to just be able to move it. My hips have always been a bit funny but it's now every day I walk with a limp/hobble due to my left hip. My right shoulder continues to play up and now it's moved also to my right elbow and I can't straighten my arm now.

It took me 4 weeks to get to see my consultant at the hospital then I actually saw one of his trainee's. He said I had a choice of going on methotrexate or try a steroid infusion. As I'm 27 I don't really want to go on methotrexate due to stuff I've read about infertility but also the side affects, therefore consultant recommended infusion which he said I'll get you in for next week. 3.5 weeks later I finally got the infusion however it made me feel less pain for 1 day only so now I'm back to square one.

Whilst in the day unit I asked for them to write in my notes I wanted to see my consultant about my wrist as it's getting worse, I've lost a lot of weight on my right forearm and the no movement is worrying me. I hadn't heard anything from the hospital so rang earlier this week and they said you've got an appointment for the 8th March this being 7 weeks from my infusion. I can't cope for another 5/6 weeks of this pain and just feeling like crap for my consultant to turn round and say try this instead for something not to work again.

I've rang the helpline and no one seems bothered or wants to help it's like just live with it. I just wished more people knew the pain & how it makes you feel.

I had 3 weeks off work when this first started but I've had to come back as can't afford to be off any longer but god it's hard work. By the time I get to work I'm exhausted before I even start working.

I know I'm rambling but I just feel like I'm giving up and having to put up with the pain etc. that I'm feeling. Can anyone offer support on trying to make me feel better whether this be medication recommendations or hospital advice.

I'm currently based at Wolverhampton (New Cross) hospital but thinking of moving due to the lack of care I'm receiving.

Jene

22 Replies

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  • hi jeni sorry things are so bad do you have rheumy nurse that you could contact or even your gp might be able to help im on mtx and it is slow to work they have been increasing it since July and it is still going up i dont know about your drug and how fast it works but i am sure someone will be along soon that will know

    lizz

  • Hi Lizz,

    I have spoken to the nurse via the helpline but she just wasn't interested which is how I feel about all the nurses there now. I have actually made an appointment with my GP for Monday to discuss how I feel and especially my wrist.

    I think after 9yrs sulphazadine is giving up especially when some nurses tell me your only supposed to be on it for 2/3yrs.

    Lizz have you had any side affects from mtx?

    Jene x

  • hi jene im up to 20mg of mtx with no side affects except for feeling a bit sicky and off the next couple of days which i do play up a bit no grandkids they pop in but dont stay and i slop around dont cook full meals or get takeaway and pamper myself lush bath and good book

    lizz

  • Jene, go to the p.a.l.s at your hospital and complaing to them about your treatment. You will be surprised by the speed with which thing should be done. I live in warwickshire so i am not far away. My treatment is from george eliot hospital in nuneaton and i can't complain about my treatment there. In fact my nurse will go out of her way to explain things to me.

    Hope you get some resolution. Sylvia.xx

  • Hi Sylvia,

    Thanks for your post I wil do that as I feel like I get no help. I only found out my arthritis has changed to seonegative reading my discharge notes no one has even told me. I work in Redditch and wondering if to move hospitals to over here at the mo. That's the thing I wish I had a nurse to talk too but they just don't care, I've even had them shout at me which of course when your feeling low made me burst into tears.

    I'm onto to making a complaint now :)

    Thanks xx

  • Hi Jene, so sorry you are in such awful pain. My right wrist was the worst affected of me and it really was as if it was broken on and off for about six months - once it was so severe it actually made me throw up and I couldn't drive. I'm lucky that I was already through childbearing when all this started a few years ago so when I was diagnosed I was able to go straight onto MTX - which has been brilliant for me despite some side effects. The side effects actually only got bad when I also started Hydrioxichloraquine - but I've stuck it out and switched to injectable MTX and increased my folic acid and lowered my Hydroxy dosage and am now doing pretty well - 70% disease control I was told a few weeks ago.

    There are other drugs that you could consider of course and Sulpha is one of the less powerful DMARDs. But if you are wanting to keep yourself open to conceiving then you probably should avoid taking Methotrexate. However you will have to weigh this up with your health overall and if you are feeling as desperate as you sound it might be worth at least trying to get the RA under control using MTX and then come off it once you have achieved this? It needs discussing with your rheumatologist.

    I hope you are now writing to PALS as Sylvi suggests and if you can switch to the hospital she attends that sounds like a really good solution. I am always amazed when younger RA sufferers are treated so shabbily by the NHS because I would have thought you would be a priority so that you can continue working and being functional for as long as possible. It's crap really and I do feel for you - please fight all you can to get proper treatment as 10 years of one DMARD with no proper follow up plans or adjustments to medication is rubbish really.

    Please do go and see your GP about everything (including MTX and conceiving) as soon as possible as he or she may be the most useful person to support you moving to a better hospital. Tilda x

  • How about one of the bham hospitals? search top of this site tab hospitals and see which had best reviews. have heard queen alexandria hosp ok and some of the bhm ones such as selly ok are ok too xx

  • Born in kingwinford near dudleyl.. Russell Hall looks good from reviews .. dont move yourself doen to my county for treatment severe funding issues.

    Most people take mtx and do well on it.. there is also leflumonide , hydoroxychloroquine and gold injections you could chose from... the last two can be sometimes be continued during pregnancy.. get advice from a rheum person to clarify, good luck xx

    Alison

  • Jene, I don't have any advice to add to what's been given already. But I just want to say that the sudden deterioration you've experienced, the impact on your working life, the fact that the steroid infusion basically failed, the pain you are in, the fact that you are of childbearing age which means there needs to be a proper discussion and a lot of thought about your drug therapy ........... all of this adds up to you having a genuine & immediate need for a very thorough & unhurried consultation with a Rheumatologist.

    So yes, I totally agree with the others, stay strong & keep pushing until you get the help you need. Also it does look as if making a complaint might be exactly what is required, you have been treated badly & although fighting back is hard when you are feeling ill it may well help to get things moving.

    Good luck,

    Luce x

  • Hi and thanks so much for your comments it means a lot that people want to offer support & advice. As you have said sulphasazadine is a lower dose and it doesn't seem to be touching the problem currently especially my wrist the gel from the chemist seems to work better :) I've never had any type of plan or support on my medication and when my husband & I saw my consultant at the end of December he said it was mtx or nothing and didn't care that we want a child. Im hoping my doctors appointment on Monday may help me in speaking to someone but we'll see as fairly new change of doctors due to moving house.

    I've been lucky at work so far as my bosses partner has lupus and gets similar problems I get so he understands to a degree but having only been with the company for 11 months its not good when I'm having weeks off at a time. If I could sleep all day I would the tiredness is killing me at the mo. I travel an hour to get to work and that doesn't help grrr! I get home and all I want to do it curl up & cry and often do.

    My husband has never seen me this bad and it upsets him to see me like this and gets angry & frustrated that he can't do anything. Must be hard for our families to see us like this.

    Jene xx

  • I am definately in the same boat as you with useless rubbish rheumy departments!!

    I was diagnosed in april 2012 but had pain from november 2011, im now on my 3rd type of ra drug, been on mtx, leflunomide and now just hydroxy.

    Came off leflunomide december as it just wasnt working and the rheumy nurse told me to stop them and had steroid injection, come back in january they said. Went back and no notes of coming off drugs or needing new ones, they asked why i hadnt been back to consultant.......because no-one ever told me to!!

    Went back to consultant and he gave me hydroxy, told me to use gel and take paracetemol and go back in 4 months lol!

    I am climbing the walls with pains everywhere and im convinced consulants and rheumy nurses are clueless!!

    Sorry for rant but im in same boat as you and just need sympathetic nurse/consultant or at least to see the same one on a regular basis instead of a new nurse every time and a trainee consultant!!

    Rant over.

    I do hope you get sorted out and get some painfree time.

    Take care

    Jo

    Xxxx

  • To both of you - the thing I really want to emphasise is that you can't learn enough about your condition, symptoms and how it all works (or doesn't work in your cases). I know this takes energy but it is the only way. I don't have a great system up here in Orkney either and have no rheumy nurse or access to anyone who can assess whether or not my RA is progressing so I just see the rheumy when one or other are up here and never know when that will be but so far it's been between 6 and 8 months each time with changes in meds sorted out for me by my GPs - who are really good. But I have been really proactive and that involves being unembarassed by pestering my GPs and writing letters of complaint to medical directors where necessary.

    It really helps to have a good GP I believe - that's been the most important thing for me and helps me to accept RA and they don't make me feel stupid for questioning medication and for coming on here and for having an enquiring mind. I think that those who shout loudest get - but shouting doesn't have to involve actual shouting - just keep knocking on doors and being proactive. Also I have found that watching my diet very carefully and getting daily exercise and access to a physio and occupational therapist have all been really important. I didn't just land these things - I found out about them on here and decided to ask my GP for referrals and it went from there. If I need to see a physio then I can just email her and she gets back to me eventually. So read up and stick up for yourselves please! Tilda x

  • So sorry you're suffering. Doesn't sound as if you are receiving adequate care. Hope you can feel strong enough to demand re-assessment. Good luck and keep using this community for the support it offers.

  • Hi all, thanks so much for your support it really helps I haven't cried in the last few days which is a bonus and thts because I don't feel as alone as I did.

    I'm looking forward to my doctors appointment on Monday evening to discuss medication, arthritis itself and my treatment at the hospital which I feel is uncaring & useless.

    I said to my husband last night I'm not thinking about waiting for my hospital appointment now which is weeks away (8th march) which is supposed to have been a quick appointment but instead looking forward to my holiday in Spain for 10 days. Usually the heat helps me but as this is pain & inflammation I've never felt, it will be interesting to see what difference the heat will make. Fingers crossed it's helps!

    I'm finally sitting in the hairdressers now having my hair done. One thing I've found since this flare up washing my hair & styling it is a nightmare, one handed hair washing is difficult he he. So I'm going to relax and enjoy having my hair done for the next few hours.

    Hope everyone has a lovey Saturday!

    Jene xx

  • hi.....i go to new x, who is your consultant...mine is AL-ALAF, he is a waste of time, my nurse is sister harper, i would rather go to her than him, just before xmas i had a really bad flare up and the wife phoned and got me an appointment, we saw another DR. and she was brilliant....since xmas she has put me forward for rituximab, just waiting to see if the P C T will fund it, ..she as done more for me in 5 weeks than my consultant has in 10 years....so hang in there and ask to see another DR....

  • Hi there,

    Thanks for your response really interesting, my consultant is dr new***. I haven't met your sister yet still waiting for an appointment :)

    My flare is in it's 11th week today and I'm just not getting appointments to even get in front of a consultant to even get new medicine. Can I ask who is your doctor as then I can always can who I want as I'm fed up of my current one.

    Jene xx

  • my consultant is mr ....-alaf......i dont rate him too much, i did see a woman doc at xmas as i got an emergency appointment, she was really good, she was the one that put me forward for rituximib,her name is nikie , cant remember her last name, have you tried phoning the rheumy hotline, i always phone that if i cant cope with the flarups and a nurse phones me back and i just ask for an appointment., when i asked my nurse about changing my consultant she told me i would have to get my gp to refer me to a different one...if you hav'nt got the hotline number let me know, i will post it on here...

  • Ive got a doctors appointment tomorrow evening to talk about referring me to a different consultant. I will see if I can find the last name of this nikie then. I've rang the helpline but just not helping me, said I have to wait for my scheuldued appointment which is now 6 weeks away :(

    Thanks

    Jene

  • Been to the hospital this morning for bloods and asked for some help but nurses just didn't want to know, feel fed up again.

    Did find out the name of that woman doctor you saw Colin Dr Nikie Tugnet and she's a registrar.

    Hope everyone else is having a better day xx

  • thats the one......she is really good, cant understand why they are not helping you more....someone told me to move to cannock hospital , they specialize in R A , but its a bit to far for me to travel....keep on at them, and if the pain is to bad keep calling the hotline....they will have to see you before 6 weeks

  • Went to the doctors last night and got support from my GP it was nice that someone wanted to actually listen. He is going to see if Nikie can take me on so we'll see. I'm also trying a different anti-inflammatory 'meloxicam' to see if that helps at all instead of the 'celebrex'.

    Oh right didn't know about cannock hospital that isn't too far for me hmm I will ask about that too then thanks!

    I do keep ringing but they've stopped calling me back think there fed up of me x

  • I finally got a closer appointment after ringing the hotline every other day. Taking my notes about the different medicines you've all mentioned so thanks for all your help. Fingers crossed I get somewhere today.

    Jene xx

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