What can I expect?

[Barrister]

I am seeing my Rheumatologist later this week and wondered what sort of routine I can expect. I was diagnosed a few weeks ago and sent off for a month with Hydoxychloroquine and voltarol. Should I be expecting more blood tests? I'm asking this question as I am not in the UK so probably the protocols followed there will not be followed here. Thanks for your input. Clemmie.

[Hidden]

Hi Clemmie, how are you?

I'm not on the same medication as you or the same country! I'm on Methotrexate, I had bloods tests done every to weeks for two months then monthly to see how I'm coping with the drug. I seen the Rhemy once every three months but have access to a helpline if needed, it's not manned but if you leave a message they usually get back to you. I'm going to find out when I next go and see my Rhemy if I could possibly see a specialist nurse in between appointments as - especially in the early days of diagnosis - you do have a lot of questions and concerns, from what I've read on here some people do see a nurse in between Consultant appointments, thank goodness for this site though! I have my bloods taken at my local surgery by a nurse who I often bombard with questions....bless her! and even though she's helpful she's not a specialist.

Good luck with everything x

[Barrister in reply to Hidden]

Thanks a lot, Angej. Your answer at least gives me an idea of what I can expect to happen. I don't think that they have specialist nurses here but I will hopefully find out a bit more when I see the Rheumatologist later this week. Last time I was a bit too shocked even to think of questions, let alone ask them! But I'm ok, things could be a lot worse. The sunshine and warmth are a great help. I hope things go well for you. Clemmie.

[helixhelix]

I have a lovely rheumy, so generally she asks how I've been since last appointment which gives me the opportunity to ask any questions and then we discuss whether meds are doing their job and whether any changes needed. I too have regular blood tests, and keep a bit of a diary about my RA so it's quite easy to see if things are working or not. But then I've had this for quite a while so things are more stable. Since you've only recently been diagnosed I presume the big question is whether the drugs are doing their job? With Hydroxy I don't think you need regular blood tests, but you may want to ask how they will be able to tell whether it's bringing down the inflammation without them? And have you had x rays of hands and feet? As that's useful to give a baseline for the future. But each rheumy seems a bit different - although the important thing is to ask about whatever's worrying you most. have you written a list? I find things vanish from my head very easily if I don't. Polly

[Barrister]

Hi, Polly, I have had X-ray and MRI of my feet but not hands. At the moment my hands are okay, although periodically I get pain in my knuckles etc. I will write a list as you suggest. I am usually very organised and know exactly what I'm doing but at the moment I feel as though everything is out of my control. My family and friends laughingly call me a bit of a control freak and so I am finding things a little difficult lol! Thanks for your reply. Clemmie

[Hidden]

Its hard to say - I think you said you were in the Middle East somewhere didn't you? Hopefully this will mean you have better access to good drugs and more time with the consultant than if you were in the UK. I think if I were you I would research the other DMARDs and as Polly suggests I would want to know how I was going to be monitored while taking Hydroxy and what I should do if the RA started more on my hands. In the UK the DAS (disease activity score )for RA seems to focus a lot on hands - which are definitely my worst affected parts so I would want to know what to do if they start worsening. Tilda x

[Barrister]

Hi, All, I saw the Rheumatologist yesterday and he did keep asking about my hands, TildaT. I had to impress on him that my hands are ok at the moment, although they have been very painful in the past. My pain is primarily in my feet , neck and shoulders and this has been for years now with very little let up. He wanted me to take Prednisolone which I refused. Maybe I will think differently later down the line but I really don't want to start them yet. So he increased the Voltarol and said keep taking the Hydroxy. Oh and he gave me what he called a "relaxant". My husband said I haven't been relaxed all the time he has known me so that will be a first! Anyway, that's what I have for the next month til I see him again. Clemmie