help need to know what to do

hi all hope all is well just a q had lupus for 4 years now started off with dermotogist who put me on 150mg aza folic acid nifidpine steriods10mg ompersole also amatriptaline which was fine he reduced my meds and i ended up wiyh severe joint pain he up them again and referred to a rheumy that was fine he gave me hydroroxy i was then went into hossy for 2 weeks for intense phsio which was great got help with mobility from the ot whosaid they would se me at home not seen them yet i was then refered to a neroligst seen him last week i to go for test in my nerves that ok my gp then wrote to all of the specialist to get 1 of them to take the lead in my health instead of all giving me differnt meds he rec letters back to say that no 1 wants to take full respoabilty they passing the buck to each other my gp not impressed but we dont know what to do feeling really down ayt the moment wish sometime they could live our life for a day so dont know were to turn at the moment and was looking for any advice sorry for the spelling just now feel more like a burden than anything else

6 Replies

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  • Goodmorning anjieskye :-) it is so hard when pushed from pillar to post. Your main carer should now be the rhummi. I am under liver / kidney specialist besides rhummi and she does all the main care and updates them and they together agree my meds. If your not happy with yours you can ask to change. X

  • Sad to hear this. It should really be the rheumatologist x

  • Oh poor you, I'm under a rheumatologist who is the lead in my care, and in my experience so are other patients who i've met.

    I really hope this gets sorted for you, all the best.

    Slowmo

  • Hi,that is really bad.I was diagnosed with lupus 17 years ago when I was 17 years of age,your rheumatologist should be the person who does your main care and does any changes with your medication.The only time my GP will mess with my medication is if I have been ill like sickness bug he may increase steroids for a week and the gradually reduce them back again.If you need to see other specialist your rheumatologist will refer you,example I have been referred to chest clinic and cardiology recently because of problems I am having.

  • ty for your help will let you all no what the outcome is angieskye

  • Hi - Have just read your blog and really feel for you. I too feel passed from pillar to post and didn't know who to consult but it is now more clear and my first port of call has to be my Rheumy who over the years has sent me for every test there is. She is a very busy person and is difficult to access so I also consult my GP who has recently recommended some reading matter by way of self-help. I have yet to access the information as I have been away but he recommends three sites 1. Moodjuice, 2. Moodgym, 3. Living Life to the Full. He has also given me a book prescription to take to the library for a book by Ben Goldacre called 'Bad Science'. I will be looking at all these over the next few weeks as I have reached the stage where I feel I can only help myself. Hope this may be of help to you.. Gabs.

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