help needed with consultants appointment

I need some help and advice with my consultant appointment this week. I have vasculitis but not WG and am currently taking Plaquenil and MXT 25mg by injection after changing from tablets wich made me feel so ill that it wiped out 3 days of the week. I stopped taking all the meds for about 10 days (just before changing to the injections) as I couldn't face the MXT tablets anymore. I'm not sure if it was that or a period in the sun that caused all the symptoms to increase and I felt terrible, all the symptoms began to reappear, but slowly since changing and restarting everything things have improved, I still have periods when I feel very ill and everything aches. The injection still make me feel sick but not as bad as the tablets. Do I own up to stopping all the meds?

I get so stressed before I see the consultant, my mouth goes dry I feel sick and I forget what to say and ask, he's usually quite nice but I never know what to say when he asks how I am and end up limply saying 'fine' some symptoms he dismisses(heart arrythmia, dizziness... among others) as not being related and the put down of all is when he says I'm getting older and should expect aches and pains. I don't agree I was a fit runner doing in excess of 6 miles three times a week, and cycling.

Do I say about the periods when things have been bad or just the better times.

The last flare I had was in April as explained above. I'm scared of what might happen if the meds are stopped but also sometimes want to stop them when I feel so sick.

Sorry this is a bit of a ramble but any advice would help as how to handle this.

8 Replies

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  • Hello Porky!

    Sorry to read that you are feeling stressed about seeing your consultant. We all do, I think, to some extent and that makes real communication difficult when we go to their clinic.

    I think the advice of others will be along the same lines but I will start the ball rolling by saying that, if I were in your shoes, I would confess all in terms of stopping the medication for a while. Tell him why you stopped, this is also important. I would also be totally truthful about how you are feeling. How else is he to help you? Remember that how the patient feels is a VERY important indicator of how the disease is going (more so than blood tests, I am told) and thus Is really important in decisions about how to treat you.

    Perhaps a change of medication is necessary to something that won't make you feel sick? Or something to stop the nausea and allow you to continue with your present medication?

    Another important thing to do is to write things down before you go for your appointment. Make a list of your symptoms, with how long each one has been going on. Also make a list of questions you want to ask. Make sure you go through everything and get answers. If you don't understand the answers, ask for an explanation or a repeat of the answer. Make notes if you need to (brief ones!). Remember he is PAID to listen to you and you are IMPORTANT!

    Another good thing to do would be to take someone with you, so that you can compare memories of what was said, if you forget.

    The symptoms your consultant dismisses may or may not be directly related to your vasculitis (could they be side effects of the meds.? ) but, if they are troublesome, or worrying you, then they need investigation. If your consultant is not willing, then how about seeing your GP?

    Good luck with your next appointment. Chin up! and let us know how it goes!

    Ayla

  • Yes Ayla has answered it really! Don't forget it is YOUR consultation! and it is for you to tell the consultant what is going on or they can not really help.

    1. I use an iPad which I list everything that goes on in that 3 months (as you will forget something that you might fine minor BUT could be major to the consultant.

    2. I have a Cerebral form of vasculitis and have mini stokes, which messes with my brain - so I can not remember much really!!! but I bought a iPad as my guide/partner, keeps your Independence (disability tool), helps your confidence; and I will read this out to the consultant. I also use photographs as I have bleeding and show blood blisters (macro photo's are best sometimes as it shows more detail) any evidence or happening must be written down. You are not fine! if you have Vasculitis. Take a bottle of water in with you, to try help a dry mouth.

    3. It is YOUR CONSULTATION you must be in charge of it and tell them everything that goes on - this is the only way they can help. Don't worry about the consultation they are only a person like you but are qualified in a particular discipline; like you or the work you did - they would not probably be able to do what you do or did?

    4. I know you will probably have an appointment every 3-6 months? so it is so important they van try rectify the problem and that you then take the medication as prescribed, I think most people have been through many different medications until they find one that suits you and your body and helps?

    5. I have had an odd question from them "So what one thing would you like improved?" have an answer ready! so maybe the medication is all-right but making you sick - so the answer is 'stop feeling so sick!, so I can face taking my medication' This is then up to them to give you something to reduce you feeling sick or maybe change your medication - this is why they are there and this is there profession which is for them to resolve!

    I hope this is of some support.

  • Thank you both very much for your helpful advice.

    I have written up a time line of symptoms and will take that with me. I used to be confident and able to cope with most situations with a responsible job. I now feel vunerable and can only work part time so feel that I must get it right in the short time I have in the appointment as it makes the difference to what happens over the period to the next appointment.

  • I'd just like to reiterate what Ayla said about taking someone with you to the appointment. When I'm really poorly or concerned I find it difficult to concentrate and take everything in that the consultant says - having someone with you really helps. My husband comes with me and tells the consultant how he thinks I am (often he can tell I'm poorly before I can because of my mood changes ...) and can give me his take on what the consultant has said afterwards.

    Don't get angry with yourself for not coping as well as you usually do; when we are diagnosed we are thrown into a situation we have no experience of at a time when we are feeling really unwell. It's hardly surprising we aren't on top form in the confidence stakes! I promise it will get better. These sites (which weren't around when I was diagnosed) and local support groups can really help you with advice and on-going support.

  • Yes..always take someone with you. John and I always go together for all John's appointments. two sets of ears are always better than one. I always make notes just in case John misses anything. Feeling poorly nervous and upset at these appointments can be a problem and on your own you are bound to miss something or wish you had asked something afterwards. John and always make a list of questions... we keep a diary too so we can refer back to it. It will get better as time goes on..just hang in there and keep us up to date on how things are going.

  • I support all that has gone before on the need to take someone with you and to make notes. One useful tip I have to keep a record of my symptoms between consultations is to buy two diaries in January - one is my CNS Vasculitis Diary that I keep by my bedside and I enter a brief note of any problems that day plus how I felt - sad/angry/uncertain/happy.

  • Thank you all you have given very helpful advice. The diary idea is also good and I will certainly now keep one. As I see the specialist nurse every 2/3 weeks I just tell her and then move on but from now on I'll write down what I tell her so that I have a record of it as well. A couple of times she has said that my inflammatory markers coinside with feeling unwell.

    Unfortunatly it's too late to ask anyone to come with me so I'll have to do this on my own!

  • Hi

    I had my appointment yesterday and went armed with water and notes, was really nervous. I was seen by a locum consultant - Is that usual? confessed to having stopped the meds and my reasons and she was fine about it. Forgot a pen to take notes!! I did forget to go through some symptoms that are bothering me, that was because I got sent off for an ECG which she wanted to see straight away and I panicked a bit.

    So thank you all.

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