Off to see my rheumie

Hi guys

Off to see my rheumie this evening for a follow up appointment. This will be the second time I've seen him.

I have lots of questions I need to ask him about lupus but am sure I have forgotten lots!

Wish me luck and if you can suggest any questions I could ask let me know. (Diagnosed only 2 weeks ago)

Hope you all had a gd day xx

7 Replies

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  • Ask him to explain each of the blood test results that are out of range and what that means for you and your illness. Make sure you understand why he is prescribing what he will be prescribing, for how long, what side effects to expect and what to do if you feel ill. Say that you're sure you'll forget many of the things he has said in the consultation, so could you possibly email him or his secretary with questions afterwards (this is related to the question of what to do if you feel ill, you will need to contact him, basically, so you need his details).

    I'm sure you will want to ask about prognosis and how the disease will progress - don't get discouraged if he can't tell you much - those questions haven't yet answered, autoimmune diseases have a mind of their own and although we share many symptoms, we can't predict if we will have all of them or none and if we have them, how critical they will become.

    The rheumatologist will try to bring your illness to an acceptable level first, so there will be a bit of trial and error with your medication in the first few months, so don't expect to be sorted within 2 weeks, it takes between 4 and 6 months from full flare without medication to a manageable level, so don't lose patience.

    Try to write down what he is saying, you'd have forgotten a lot by the time you get home!

    Good luck, chin up and let us know how it went.

  • Feeling very disappointed and disheartened. Thought my Rheumie was a super hero when I first saw him because he took such decisive action and put my on the medication but today i felt like he just was not listening at all.

    He rubbished all of my remaining symptoms as being a side effect of the medication (morning headaches, nausea, hot sweats and swollen joints) and basically told me to get on with it for another 6 weeks and 'we will see'.

    I appreciate that this is all trial and error and I totally agree that I need to be on the Pred for another 6 weeks but he was just not interested and not listening to what I was experiencing.

    Really frustrating and am quite upset and down about it all now :-(

  • I did say not to get your hopes up. How long have you been taken the steroids for?my usual symptoms have improved in he first week I started taking them but I acquired several others which included nausea and terrible joint pain, so I get why he thinks yours could be the steroids. Although you are down about it, you'll see tomorrow that he couldn't do anything else but let you continue for 6 weeks. He will still be your hero next time you see him, you watch. What is your diagnosis?

  • The symptoms u mention can also b typical of many autoimmune conditions so could very well b nothing 2 do with the meds & that it's just sods law that more symptoms have decided 2 start 2 show themselves & have a dig at u. Keep u're chin up :)

  • Hope so. My mum has just pointed out that I saw him at the end of what was probably a long day and he had had enough. It wasn't so much his advice as i agree I should be on the steroids to see what happens i just didnt feel like he was particularly interested today :-(

    Been on the steroids for 2 weeks. Diagnosis at the moment is lupus like disease as my bloods that i had two weeks ago were ANA negative.

    Hopefully a nice dinner, long bath and good sleep will make me feel better about it in the morning :-)

  • Hope you're feeling better! You need to see my rheumy. I see him privately but he is also at St Barts. He is bonkers - I love him! Hope you are feeling better, although I do hope you are asleep at the moment! Sometimes, after a bad hospital appointment, a good sleep can give you some va-va-voom back and you may find yourself caring somewhat less about ignorant quacks! :)xx

  • I was diagnosed with Lupus mid Jan and had to delay going on meds cos of an op but have now been on steroids for 4 weeks. I felt that my joint pain got worse after 2 weeks and certainly had no improvement so contacted my Rheumatologist last week and he has put my meds back up for 2 weeks to then decrease again. I feel I'm beginning to get some improvement now so hang on in there.

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