Just need to vent

I have had Lupus (MCTD) for the past 10 years -- diagnosed anyways. I recently went to my Dr and a few weeks ago I had a flare- but was feeling much better my prednisone intake went from 20 mg to 10mg and the Dr says that is a very high dose(I dont agree). So she has changed my medication - even though I told her I was leaving on holiday on April 1st and could we wait till I get back. So last week I started MMF 500mg a day- I used to take 100mg of Imuran. Well went back in to flare and feel terrible.And now I am on 15mg of prednisone instead of 10. I am so angry cause I wanted to go and see my family and enjoy my holiday now I dont know how I will feel. She even said that i should get blood work while I am in America. I said I have no health insurance for america, no Dr to tell me the results or treat me if I do have have the blood test. She just thinks I can go to the hospital and say oh by the way I need blood work. I will only be home for 2 weeks after a year of not being home.

Now when i called them last week she asked me to see the Nurse on Wednesday and said she would call me later to tell me a time. I have not received any phone call and that was from last wednesday.

I will be going for blood work on Wednesday at the hospital- so I just plan to see if Diane is in to see me. Plus if the blood work is ok- she wants me to increase the dose to 500mg X2 a day on the MMF- when will I get a prescription to take with me on Holiday.

This is so very frustrating!

3 Replies

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  • I am so sorry that you have had such a frustrating time with your dr. I can sympathise as it took me 2 years to find a dr who understood, and I have lupus for 14 years.

    I know its hard, but you must stand your groung. YOU know your body, YOU know your illness not your dr.

    Call other surguries, ask if any of their dr's are aware of lupus and its associate illnessess. Change sr's if you need to, do not be afriad to challenge their autority, they are not gods.

    If you really dont get anywhere with the way your treatment is going, suggest politely that you will be refereing the way you have been trested to the medical council - this usually gets results!!! or you could present her with a bill for the holiday.....

    I really do hope that you go on holiday and I send you love, hugs and best wishes for the rest of the day, week, month and year.

    feel free to rant anytime, visit or website beat the butterfly and rant their too. Lots of support.

    Mandy

  • Hi Tony,

    I am so sorry about your frustration. I do understand what you are passing through. For 10 years I have been on Imuran 150mg, hydroxchoroquine 100mg and prednisolone 7.5mg daily. When I started off with Imuran I had to do weekly blood tests, then 2 weekly, then monthly, now I do it every 2 months. I have coped very well but even with this I still get flares. I am not sure what you would like to do... Check with your dr. whether you can stop Imuran and begin when come back.

    Sometimes when I have had bad flares and increased prednisolone 30mg and brought it down gradually. You know your body better. I think you should find a doctor that you can work together as a team to manage your symptoms. This will make you feel in control and confident about your illness. Many doctors are challenged and threatened by our symptoms and providing us with good patient care. They are not confident enough to deal with lupus.

    I wish you best of luck. You know that we are all sharing this with you. Take care Tony

  • Know how you feel so feel free to rant and rave it does help.

    My appointments at the hospital keep getting cancelled and put back i have been waiting for year and half now! I had to pay privately to see the same prof through my private hospital!

    Keep smiling although i know it can be difficult.

    Regarda Jello

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