New and a little shy :)

Hi everyone,

I'm new to this, a little shy and nervous about writing but you all seem so lovely. Just reading your comments has lifted my spirits. I'm not alone!

I was diagnosed with RA in July of last year & things seem to have gone from bad to worse since then. Having tried four DMARDS and suffered horrible side effects with all I have moved on to Golimumab. 3 injections in I have had a week in hospital, my worst joint pain ever & a complete meltdown. I have an appointment at the rheumatologist tomorrow which can't come soon enough. This has been the longest wait! I'm so sorry to moan but my list of health problems seems to be growing by the day. Desperate to get some kind of life back.

Thanks for listening to my woes especially when you all have plenty of your own xxx

22 Replies

  • Hello pennylane!

    You have been through the mill - you should have told us all your woes before, better out than in as they say! It's hard to know what to say that would be helpful but I just want to wish you well at your Rheumy appointment tomorrow. I do hope that your Rheumy is able to help. Let us know how it goes.

    Luce xxx

  • oh welcome, I have tried 3 dmards so I know what is like from bitter experience.

    Im still waiting a anti tnf decision. maybe the golimumab take as while to kick in I hope so?. my gold injections sometimes gave me worst joint pain for a day or two after?.

    They keep so many off us waiting so long, you are very welcome to moan and rightly so xx

    SUMMER aka Alison x

  • Hello pennylane :)

    So sorry to read about your bad experience with DMARDs and also especially sorry to hear that golimumab hasn't delivered for you yet!!! I'm taking it and it has worked really well. Just shows how every RA patient is different! Don't give up yet it can take a few weeks to work as Alison says!! I'm certainly keeping my fingers crossed that Simponi will work eventually! There is a good chance though if this particular anti-tnf doesn't work that another one will be way better suited for you, according to my rheumy!!

    I sympathise with your DMARDs side effects nightmare - I had terrible side effects from MTX so I can only imagine what it must feel like to have 3 of them doing horrible thimngs to you :(

    Looking forward to hearing more from you :) Good luck tomorrow and keep us updated!

    Christine xxx

  • Pennylane, it is no fun this disease and do not worry about moaning, we all do it i am afraid. You have only been diagnosed less than a year and it will take time sadly to get your meds sorted out. Heres hoping than whe you see your rheumy tomorrow they will give you something to help you. Welcome to our little group we are a fun bunch of ladies and gentlemen. We have blogs on here when it gets so silly and we need the laugh that these blogs and we have the good news blogs as well. So please feel free to write anything you want to get off your chest or share with.

  • That sounds so dreadful, I hope you get some support here, there is a load of kind people out there at the ready giving kind and supportive advice.

    You have had a very bad time of it, I hope the rheumatologist will be able to work with you better and get you sorted very soon without the side effects.

  • Hi penny lane , this site is fantastic if you want advice or a moan, but it's also good for a giggle, there are a lot of comical people on here and even though they all have daily struggles they still manage to make us all laugh. Welcome to this fantastic site.

    Karen x

  • Hi Penny lane welcome to this site. As everyone on here are so lovely you moan as much as you want xx

  • I had a similar problem with golimumab after the first injection. I lasted 2 months on it and my rheumy nurse said I had drug induced lupus. Hope they get things sorted for you soon.


  • Hi and welcome to the site, im pretty new here myself, and its good to have a 'rant' on here as everyone makes you feel better. Good luck for tomorrow x

  • Hi Jill, I've come to this very late but just want to wish you a warm welcome. I really feel for you as you've clearly been having a horrible time. Hope you get some answers tomorrow and I look forward to seeing you get the help you deserve. Best of luck

    Paula x

  • Hi I have had a bit of a day, so here late. But great you got up the courage to talk to us, I had 4 dmards with various problems but just had my second Humira injection 10 mins ago! Good luck tomorrow, let us know what he says, hugs Axx

  • Welcome Jill :-) sorry to read your having a bad time. Hope it goes well for you tommorrow. Keep us updated please. Sending many gentle hugs. Love Janet xxx

  • Join the club Jill, and welcome, we all rant and rave at times, equally we have fun times, so never apologise for any rants. I hope everything goes well with the rhumey appointment later today.

  • How did it go today? Axx

  • Hi Allanah,

    I'm just home. Had a really good long chat & weep about everything with my lovely rheumatologist. I'm moving on to Rituximab. Going into hospital for a few days at the end of the month for first infusion. Think the golimumab had worked slightly but just not strong enough to get through my raging disease. Had a steroid injection in my knee & sorted out some better pain relief. Feel a bit more positive tonight.

    Hope you're having a good day. Jxxxx

  • Marvellous! I didn't get to stay in for mine, just in the day room. They r spoiling you xx

  • I feel very special now ;) how do you find rituximab if you don't mind me asking? I hope it's working well for you xxx

  • Welcome Pennylane and so sorry to hear of your troubles, and hope there are better days and some welcome relief kicking in from your injection. Good luck with your new med and hope it works well for you.

    Love Julie xx

  • Thanks Julie, that's really kind of you. Hope you have a lovely weekend xxx

  • You too and speak again soon ;-)


  • Hi! Sorry the reply buttons don't seem to be working today! Ritiximab was easy to have. The nurses monitor your blood pressure and temperature very often after they put the drip in. The put saline up first to clear the line then the ritiximab , then another saline to flush all the drug into your system. I took about 4 hours , during that time I could walk about just pushing the drip stand, read, watch TV, and got lunch and lots of tea brought to me. The first few infusions the speed of the drip was slow. The drug didn't work for me unfortunately , but it is the cure for lots of others! I went onto Enbrel after that and now Humira. So good luck, don't worry cos the nurses are with you all the time ! Love Axx

  • Welcome. Hope you gets lots of comfort & support here and the right treatment for you is found quickly x

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