Rheumy Appt in 2 weeks tips on what to ask

[Someonesmother]

So the long awaited appointment occurs in 2 weeks and hopefully I will finally get some answers after a very very long and frustrating wait. Any treatments will be dependent on the outcome of my recent disastrous liver biopsy, (BTW I have pleurisy in my chest cavity as a result) so I wanted to go in armed with some sensible questions instead of like a rabbit trapped int he headlights. Does anyone have some things that they wished they had asked prior to being put on medication. Apparently the gastro told me they are looking at biologics? ( no idea what they are or who) which is more than I have been told by the rheumy BTW. Thanks for any tips, tricks or pointers.

[cathie]

Biologics are the newest form of treatment for RA and can be extremely effective. Its worth checking websites for info on them, either NRAS or Arthritis Research UK have information sheets. They're expensive to the NHS but sometimes can work so effectively that you dont need to stay on them very long.

Ask about support between your appointment with the consultant. Many hospitals have an emergency number in rheumatology so you can speak to a nurse (usually its an answermachine so they ring you back).

I'd ask about the protocols they use for treating you. Its unusual to go straight on to biologics but perhaps you have special circumstances. They will probably give you a blood test and feel your joints. So its a good idea to make a list of your questions and your symptoms. I always forget everything when I have an important appointment.

Hope all goes well, let us know!

[Hidden in reply to cathie]

Cathie,,

Just wanted to say once you are on biologics and the RA goes into remission you are on biologics for life not until the symptoms go away

Kate

[cathie in reply to Hidden]

No. I was on anti-tnf (the earliest form of biologic) for nearly ten years. I have been fairly stable for quite a while now, so last October the consultant said I was in remission and could come off all my meds. I queried this as a bit drastic and am on a stable dose of methotrexate which i've been taking along with the biologic. But no more bios for the time being.

Another indication of how well this treatment works is that I was clearing out my medicine cupboard and found that the last lot of painkillers expired in 2006. havent needed them.

[Hidden in reply to cathie]

So what happens when you are not on DMARDS?

[Hidden in reply to cathie]

So delighted for you and your success however you have to remember not everyone is treated the same and we have to be careful on a site like this when stating facts that those are correct for everyone and not assumed that because you have been treated so that everyone will be the same.....now I find based on your statement that I am questioning how long I will remain on biologics and quite frankly now very very concerned

So your statement has just made me worry and that is wrong especially if you are incorrect ....

Not happy

[cathie in reply to Hidden]

I'm not sure why you are responding like t his, I am not seeking a confrontation but merely reporting my experiences. I'm sorry if my comments have made you anxious but I would have thought that they could be reassuring? And I made no claims that my experience was universal.

[Hidden in reply to cathie]

Cathie- most definitely not seeking confrontation. Your post read as that one is only on biologics until the RA is in remission...however even you are still on DMARDS. I have always been told that treatment is for life. For me on biologics alone I will be on for life......apologies if I have misunderstood your comments

[wiliby in reply to cathie]

Hi Cathie, don't know if you remember me, I used to have a 'ghost' profile picture and came under wiliby, anyway, I remember you posting your dilemma when your consultant was considering stopping your biologic. I've been away from site for a while but delighted to hear that you are doing so well! over the moon in fact

Long may it continue x

[cathie in reply to wiliby]

Thanks! Yes I'm doing well at the moment, quite active. Fingers crossed as always though. I hope you're ok too! I miss your ghost in a sheet, but your real pic is lovely

[wiliby in reply to cathie]

have been fantastic however not sure if I'm flaring or the Enbrel is loosing it's effectiveness, but my consultant did mention a while back of the possibility of coming off meds like yourself as I was doing so well but he did say it would be a long way off and done very carefully but possible all the same maybe not now though. I love seeing pictures of people, thought it was about time I did the same! x

[Someonesmother]

I live in Oz so we don't have any nurses or support staff. I have seen them once nearly 6 months ago, it is a long and complicated story of woe I won't bore you with, but I think as I have so many allergies and now apparently liver problems before I even start could be why they are going straight to those., Not confirmed, this is what the gastro told me last week. I was hoping to glean some wisdom from others who may be on them

[Hidden]

The one thing that comes to mind is that it might be a good idea to google biologics / anti-tnfs. I'm not suggesting you try to find out all about them as it's a huge subject but just to get a bit of familiarity ahead of your appointment. Otherwise the odd sounding names of the different biologics etc. could be very distracting for you during that appointment.

It does sound positive that biologics are being considered for you. Perhaps it would be good to ask about communication with the rheumy team because I know that's been very frustrating so far & that you've felt very isolated and cut-off at times. For your peace of mind it would surely help to have a reliable helpline number at the very, very least. But then once you are on drug therapy, there's a duty of care to monitor you closely anyway, surely?

All the best, Luce x

[Someonesmother]

Thanks Luce, yes I am not expecting miracles from this hospital especially after last Fridays experience and I agree I need to discuss contact options especially given the poor responses I have had so far.

I will do some reading just wasn't quite sure where to start and wondered if there is one more commonly used than others

[Victoria-NRAS Partner Moderator NRAS]

Hi Someone's mother

Obviously as NRAS are a UK based charity our information will be based on the UK, which is likely to differ in terms of medications and when they are made available to patients etc. However, some of it may be useful, so please feel free to have a look on our site. Here are some suggested links:

Article on disease modifying anti-rheumatic drugs (DMARDs):

nras.org.uk/about_rheumatoi...

Booklet on Biologic drugs:

nras.org.uk/help_for_you/pu...

Article on 'Anti-TNF' drugs (these are a type of biologic drug and in the UK are usually the first biologic that people try):

nras.org.uk/about_rheumatoi...

I hope this information will be useful to you.

Kind regards

Victoria

(NRAS Helpline)

[Hidden]

I did a spot of googling & found this blog produced by an aussie doctor: bjcconnectedcare.com/2012/1...

It seems to at least discuss biologics in an australian context - you'd think that he wouldn't mention biologics that aren't prescribed in Australia - tho' obviously I don't know how good the info is or isn't.

Luce x

[Someonesmother]

Thank you all it has given me something to start researching and read up on before I go. It is overwhelming all the options and I suppose I will have to wait and see exactly what they will be able to put me on dependent on liver biopsy outcome and allergies.

[summer32]

Good luck with you appointment.. make a list of questions before you go x

[Someonesmother]

Thanks Summer my problem is I am not really sure what questions to ask. I was trying to pick peoples brains for things they would have/did ask.

[francherry]

Hello Someonesmother,

You could ask them to explain your diagnosis and what the likely course of it in the future will be. I wish I had asked this. In fact, I still don't fully understand my diagnosis and will be asking my rheumatologist for a good explanation next time I seem them in September (CCP rheumatoid factor and Ro positive rheumatoid arthritis).

You could ask them about your Disease Activity Score once they have examined you. (Not sure if this is international or just a UK thing?) - nras.org.uk/about_rheumatoi... I recently learnt mine is 6.01 which means my RA is currently very active. I find it helpful to know this as it spurs me on with treatments (not just medication but other things like physiotherapy, hydrotherapy, hand therapy etc).

You could ask how long they expect you to be on a particular treatment (I asked this and didn't get a definite reply as in my case I'm just taking it week by week, but it might be worth asking).

You could ask how soon you will start to see the benefits of the drug, how regularly you will need blood monitoring (every 2 weeks for the first 6 weeks, then less frequently after that seems to be common, but I know it varies)

You could ask about potential side effects as well (I personally didn't this time as I haven't tolerated drugs well in the past but it's up to you).

You could ask who to contact after office hours - would you be able to talk to them?- as Luce says it's important to have a contact person in the rheumy team or at the least an out of hours number to call.

You could also ask them about exercise, diet, if you would be able to have other treatments such as physiotherapy, hand therapy.

You could ask them if they are planning to do other tests like an ultrasound on your hands to assess the level of inflammation etc (perhaps they have already done this?).

I would definitely ask when you are seeing them again and hopefully there will not be such a long wait until the next appointment.

That's all I can think of for now! Hope some of this is helpful and you might think I'm stating the obvious here but I wish someone had told me what to ask before my first appointment!

Good luck with it.

Francherry

[Someonesmother in reply to francherry]

Wow thanks for that it is really helpful. I just forget everything when I get in there as they rush you so much and just want to get you in and out. I will print these off and take them with me

[francherry in reply to Someonesmother]

No problem! Hope it goes well.