Hi there, I’m new here and am really happy to find this place.
I was diagnosed — Sero Positive — in 2012. For many years all was fine and the RA was well controlled with Hydroxychloroquine. Then last year after a ‘life event’ my RA flares went crazy and I was in a bit of a state. I was given Leflunamide but has a bad reaction so stopped that immediately
From November I’ve been on Sulfasalazine (along with the hydroxychloroquine), and it’s been such a battle. I have terrible dizziness with the room seeming to be whirling around me, my tinnitus is much worse than it’s ever been and the headaches are crippling. My rheumatologist has asked me to lower the dose but keep at it. Now my bloods are a mess. It’s so hard to focus with the side effects, but I’ve decided to stop taking the Sulfasalazine as it’s so distressing. I’m hoping to speak to the rheumatologist — but it’s hard to get hold of them. I’m the meantime I’m still on 2 weekly blood tests due to the ‘problems’ with my bloods. I’m still in flare up, although it’s not as aggressive as it was.
Any advice from people who have had similar situations would be amazing. I’m in a state of some distress over all this and feel very alone.
Thank you I advance.
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Peacox
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So sorry peacox your struggling. This post is so similar to me. First 3 years of diagnosis did ok on just methotrexate then last year bang huge flare that lasted 7 months and I’m still not right. Hydroxychloroquine and sulfasalazine didn’t work I had all your reactions and more I now know I’m allergic so started a biologic at the beginning of the year 5 weeks in doing ok then had a chest infection so have been off all meds for over 3 weeks 🥺started a flare yesterday.
I’m afraid your meds obviously aren’t suiting you. You have to fight your corner I was contacting my team on a daily basis with photos emails and phone calls till eventually I got an appointment.If you are like me you don’t like to make a fuss but I’m so over that now I know things aren’t right so keep pushing. I’m only able to be proactive due to this site the collective knowledge on here gave me the confidence to be proactive . Don’t suffer...
Oh and welcome people on here are lovely... we like to moan and laugh at equal measure 😁
Thank you! So much! It’s awful to hear what you’ve been through but at the same time, my goodness how it helps to know that others have ‘been there’. Yes, I don’t like to make a fuss and always feel a bit stupid when talking to the rheumies! But I will definitely start to be more proactive as I can’t live like this, it’s so distressing. Thank you for the advice and for the welcome. I’ve just been reading through some posts and it’s such a relief to find so many supportive people and people who are going through similar things. As for having a laugh — I sorely need that right now. So, yay!
I’m so sorry that your RA/RD is so uncontrolled for you. You really do need to be seen as soon as possible by your rheumatologist and have your meds reviewed by the sound of things.
Do you have a rheumy helpline or nurse you can contact and speak with or even your rheumatologists medical secretary?
I am having to learn to be more proactive and communicate how I am really feeling. Still got a long way to go with this.
Thanks to the support from this lovely group when I started my current flare up I did contact my rheumy team and was seen within two days and given treatment to calm my flare up down.
I’m still struggling with my flare up at the moment and just waiting for another phone call from my rheumy nurse about the best way forward. She is going to speak to my consultant and get back to me. I need to push now for an appointment and medication review with my consultant to get things back under control.
In my current job role I advocate daily for the patients I work with but am rubbish at doing it for myself.
I am learning to get better at this. Having the support of this lovely group has been a life line for me these last few months.
Thank you so much. Yes, my new mantra is ‘proactive’. Is a good lesson to learn. I managed to speak to my Rheum nurse this morning — tried all day yesterday to no avail. And she was lovely. She even apologised for not being around because she’s been on holiday! And she has indeed given me an appointment in two weeks (the first space she had). She has also told me to stop the Sulfasalazine immediately. They want me to go on Methotrexate, but I really don’t want to. My mum has been on it for years and has suffered terribly (including losing her hair). It’s a long story, but I’m fighting against it. Thank you again. I think my Rheum team are supportive when I can get hold of them, it’s just a lonely situation to be in sometimes. It’s lovely to have this forum. X
I am so so pleased that you have managed to speak to you rheum nurse today. She sounds lovely. Glad you have an appointment in a couple of weeks time. I am so sorry to hear your mum has had a really bad time with Methotrexate and totally understand your fight against it. However my lovely you need to be on a treatment. Really hoping there are several options for you which works well for you. Do keep us posted to how you are won’t you? x
I’m so pleased you have been able to move forward. I’ve been on methotrexate for 4 years and had no problem I can understand your reluctance but you might not have the same problems as your mother. You never know until you try you can always stop if it doesn’t suit you. You never know it might just be the one for you. It’s great when the NHS works we are lucky
Peacox so sorry to hear about your meds experience... this sort of thing happened with me until I finally got on a biologic after 'failing' as they said on methotrexate, hydroxycloriquine and sulfasalazine.
The support from my NRAS group was amazing, they said we usually turn up and make things out to be not as worse for us as they really are … everyone here who's said contact your nurse is right (and I'm glad you have done).
My nurse has been brilliant (even letting me stay on my biologic when it seemed to not be working... she just said to have depomendrone and after two shots 3-4 months apart biologic started to work again....
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