Is it just me or is all this completely frustrating!?

Sooo, this is my first blog...I suppose spurred on by feeling a bit sorry for myself. I'm 23 years old and had just started my first 'proper' job in Sep after graduating from my masters when in October I started getting all the symptoms of RA...I'm sure I don't need to list them to anyone reading this!

Since then I've been started on Hydroxychloroquine, Prednisolone and Meloxicam (after trying various other NSAIDs e.g. Naproxyn etc).

I've now been taking the Prednisolone for nearly 2 months and after it seeming like a miracle cure for a couple of weeks things have got a whole lot worse again.

My knees are like melons and stairs have become my worst enemy.

I haven't had that much faith in the consultant I've been seeing after being told I'd only be on the steroids for 2 weeks (now 2 months and not set to stop any time soon) and being promised steroid injections which never manifested. Also after reading the NICE guidelines for the disease modifying drugs it seems best practice is to start patients on two types.

Sooo long and short is I'm now transferring hospitals and seeing a different consultant a week on Wed which with my knees how they are seems like a long time away!

Hoping to attend the NRAS Solihull group meeting on Thursday this week....is anyone else going? Would be nice to talk to someone who's been through a similar thing.

Wow this was only supposed to be short!! Just finding that the whole thing is taking so long and is very frustrating. Everything I read stresses the importance of getting on top of inflammation quickly but the medics don't seem to be in that much of a rush.

Anyway rant over, any comments, tips, thoughts welcome!

11 Replies

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  • Hi, no it's not just you, I can honestly say this has been one of the most frustrating times of my life. My symptoms began last June and I only started receiving treatment 4th May. I've been started on Methotrexate and had a steroid jab in the bum. I'm new to this myself so I'm not sure about the guidelines yet but I thought you started on one Dmard often mtx and then had another added in later if needed. I think I'd be concerned starting 2 at the same time as if you reacted you wouldn't know which drug was causing the side effects? You do need to be able to trust your consultant though so good that you've been able to transfer. Also I know what you mean about stairs as before I had my steroid jab my feet and knees were agony and every step was excruciating. I don't know how much you've been on this site but there is an awful lot of support on here. My knowledge is limited but you won't be struggling to find lots of people willing to offer friendly advice. Good luck at your next appointment and rant anytime. I find a good rant on here does wonders for my blood pressure.

    Take care

    Paula x

  • got sore hands but briefly, it is very frustrating and it can take a little while for them to get your drug cocktail right and you can feel horrid whilst its going on, but there will be light at the end of the tunnel.

    Do take a list and or a friend to your appointment is my biggest tip, and pace yourself, rest and if your pain meds aren't helping ask for something else at your appointment.

    Enjoy the meeting I'm sure it will be a big help, let them know you are new and you will get plenty of support lol good luck, thinking of u Axx

  • oh and Tori, welcome to the site, and congratulations on your achievements , well done Axx

  • Hi Tori-Jane. I think it must be hellish to land this disease of ours at your tender age. I am very thankful that I had 48 years without it and am always impressed by the courage younger members on here display. Like yourself and Paula things haven't come too quickly for me re treatment either - mainly because of my remote location but also because the NICE/ SIGN guidelines take so long to filter down into professional practice in rheumatology it seems.

    In the current economic climate and with the level of ignorance about arthritic conditions (especially the autoimmune ones) I guess it's not surprising that RA is not understood by the general population and that there is national a shortage of rheumatologists. A GP friend of mine said that it was one of the tougher and more dispiriting forms of specialism that med students can choose - unlike gynaacology for example where nothing really changes over the years and so it's a relatively undemanding thing to specialise in she told me?

    There are two approaches - the step up and the step down approach in terms of DMARDs and different consultants favour different ones. The idea of getting a patient onto a combination of therapies is the one currently favoured by NICE but if you are seen very infrequently by a rheumy then it's unlikely that you will be put on a combination of therapies from the outset unless the disease is very aggressive it seems. Because of the side effects I imagine its better not to rush into any RA medication but to try each at a low dose and see how you tolerate it first. I've only been on Hydroxy for 2 weeks now but was put on it at my own suggestion having been on MTX for 6 months and feeling it hasn't been fully effective in modifying my RA - although things are a lot better than they were before the treatment started to work.

    I hope your visit to a new rheumy works out well for you and this one is a bit quicker off the mark than many seem to be. I find that things move faster if I see my GP and he emails the consultant directly - but the more educated you can become about this disease and the various approaches the better equipped you will feel to push things on and make progress with treatment. Good luck! TTx

  • Tildas absolutely right about the need to take control yourself as much as possible. Our site makes it possible to share experience which would otherwise take ages to accumulate. Apart from information it's useful to establish how to communicate with rheumy team between appointments. I hope you can get control through meds, but also keep up fitness so you can keep doing the things you want to do

    Hope new consultant is better

    C

  • One big tip ive learnt is dont put a brave face on! If you're in a lot of pain tell them and where. I used to say it was just an ache in my hands but my consultant soon realised when she sqeezed my hands and i nearly passed out, be as honest as you can and yes definitley take a list or someone who sees you at your worst.

    Welcome and congratulations on your masters!!

    Best wishes

    Max xx

  • I've found on occasion that I need to remind my consultant at the end of an appointment that he has said something on the lines of 'we could try .....'.

    I suppose their brains must 'do overtime' with each patients symptoms.

    Judi

  • My consultant once told me that he was an expert on ra and that he "didn't know anything" I am lucky in my rheumy team as i can talk to them anytime. I have rung my nurse on numerous occasions and she has been very helpful. I wish you luck with your new rheumy team.

    Welcome to this site it is great.

    sylvi.xx

  • Hi there, welcome to the site. It is a shame you havent had the joint injections yet, they really do help, and keeping you on oral steroids for so long isnt something normally done. I can understand why you are frustrated.

    In terms of treatment, it depends where you live on what you get. In some areas they throw everything in at first to get the disease stable and then taper down the dose, whereas in others start of low dose and work up to the higher dose. I dont think it matters at the end of the day, getting the right treatment is a bit hit and miss too. It can take ages to get the right meds at the right dose.

    Good luck with the new consultant, make a list of questions you want to ask, such as why you are still on oral steroids etc, then you wont forget anything.

    Let us know how you get on, Petra xxx

  • I read a book called Another Alice by Alice Peterson who was also young when she found out she had RA. Also the RA Guy website makes me laugh when I feel low

    Karen

  • Wow thank you everyone for your helpful comments and tips...I'm completely overwhelmed by the responses I've had..really kind. Hopefully this new Rheumatology team will be a bit more on the ball and proactive, just want to get things moving...no pun intended!

    I'll have a look at that book Ozzy...thank you. I recently read 'A resilient Life: Learning to thrive not just survive with rheumatoid arthritis' by Kate Elton. She's had RA from childhood..I've found it really helpful.

    Will keep you all posted on how things go next week and bear all your tips in mind for my appointment. Thanks again. x

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