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Not really sure where to post this. Just thought Id run a few thoughts by you as Im feeling a bit frustrated by it all and you are usually all so good at putting things in perspective.
Diagnosed finally last year with Lupus and Fibromyalgia. Been suffering symptoms for many years and was originally diagnosed with RA.
The Rheumy that made the original diagnosis never ever mentioned Lupus in about 10 years of presenting with lots of symptoms that I now know are Lupus. In the end he realised I maybe didnt have RA so instead of looking for another diagnosis he just took me off all medication. Steroids. Methotrexate and Diclofenac etc. Within a day or two I was in a major flare up and couldnt move. I was in hospital at the time originally for physiotherapy and hydro therapy. He sent me home where I continued to be bed ridden and unable to even get out of bed for at least 3 weeks until my GP upped the steroids and I clawed my way back to some form of movement. For over a year I had the strength of a gnat and its been a long road.
Ive been fighting that flare for nearly 2 years now and have managed to get off Prednisilone and am doing ok.. ish.
After that experience my GP and me lost confidence in the Rheumy and she referred me to another one who nearly straight away diagnosed Lupus SLE and Fibro. This GP left the surgery on the day she recieved my diagnosis so I now see another lady doctor.
Ive been to him twice in 2 years as appointments are always about 8 months apart. He now thinks my weakness aches and pains etc are now just down to being unfit and overweight. (Probably mainly caused by the Pred.) Hes pleased Im off the steroids and has prescribed exercise. Thats all good of course.
I of course suffer symptoms in between and go to my GP who then has to contact him for advice for any treatment. Shes frustrated because he never replies and has told me that often patients with Lupus get a sort of hotline to get help when flares occur between appointments.
I asked if he was experienced Lupus doctor but she said no usually he treats arthritis more. Seems there are not that many doctors that treat Lupus especially. She seems to be losing confidence in him now and is thinking of referring me back to my original GP lady doctor who now specialises in Rheumatology not especially Lupus though. She was the GP that referred me to this Rheumy for the Lupus diagnosis.
Sorry.. this is sounding a bit complicated and rambling now. Perhaps some of you that know me a bit know what I mean though.
The bottom line is.... I think. My now GP and me think maybe I should be on some sort of treatment as she and the Rheumy have agreed my Lupus is not exactly stable. He is the boss.. but hes not mentioned me taking anything to help to keep things stable. My GP seems to think Im not drastically overweight and unfit enough for it be that thats causing my syptoms. I of course dont want to take medication I dont need but Im wondering if things would be better if I was on some mildish baseline drug.
Well.. phew!!! sorry.. If anyone manages to make sense out of that I will be surprised. I suppose Im just trying to make up my mind what to do now. It seems that some of you on here and I now know more about Lupus than the people that are in charge of my treatment.
If youve made it to here you need a medal lol.
Anyway.. I feel better for writing down my thoughts and thankyou in anticipation.
Cheers guys.
Luv Sal xx
Diagnosed finally last year with Lupus and Fibromyalgia. Been suffering symptoms for many years and was originally diagnosed with RA.
The Rheumy that made the original diagnosis never ever mentioned Lupus in about 10 years of presenting with lots of symptoms that I now know are Lupus. In the end he realised I maybe didnt have RA so instead of looking for another diagnosis he just took me off all medication. Steroids. Methotrexate and Diclofenac etc. Within a day or two I was in a major flare up and couldnt move. I was in hospital at the time originally for physiotherapy and hydro therapy. He sent me home where I continued to be bed ridden and unable to even get out of bed for at least 3 weeks until my GP upped the steroids and I clawed my way back to some form of movement. For over a year I had the strength of a gnat and its been a long road.
Ive been fighting that flare for nearly 2 years now and have managed to get off Prednisilone and am doing ok.. ish.
After that experience my GP and me lost confidence in the Rheumy and she referred me to another one who nearly straight away diagnosed Lupus SLE and Fibro. This GP left the surgery on the day she recieved my diagnosis so I now see another lady doctor.
Ive been to him twice in 2 years as appointments are always about 8 months apart. He now thinks my weakness aches and pains etc are now just down to being unfit and overweight. (Probably mainly caused by the Pred.) Hes pleased Im off the steroids and has prescribed exercise. Thats all good of course.
I of course suffer symptoms in between and go to my GP who then has to contact him for advice for any treatment. Shes frustrated because he never replies and has told me that often patients with Lupus get a sort of hotline to get help when flares occur between appointments.
I asked if he was experienced Lupus doctor but she said no usually he treats arthritis more. Seems there are not that many doctors that treat Lupus especially. She seems to be losing confidence in him now and is thinking of referring me back to my original GP lady doctor who now specialises in Rheumatology not especially Lupus though. She was the GP that referred me to this Rheumy for the Lupus diagnosis.
Sorry.. this is sounding a bit complicated and rambling now. Perhaps some of you that know me a bit know what I mean though.
The bottom line is.... I think. My now GP and me think maybe I should be on some sort of treatment as she and the Rheumy have agreed my Lupus is not exactly stable. He is the boss.. but hes not mentioned me taking anything to help to keep things stable. My GP seems to think Im not drastically overweight and unfit enough for it be that thats causing my syptoms. I of course dont want to take medication I dont need but Im wondering if things would be better if I was on some mildish baseline drug.
Well.. phew!!! sorry.. If anyone manages to make sense out of that I will be surprised. I suppose Im just trying to make up my mind what to do now. It seems that some of you on here and I now know more about Lupus than the people that are in charge of my treatment.
If youve made it to here you need a medal lol.
Anyway.. I feel better for writing down my thoughts and thankyou in anticipation.
Cheers guys.
Luv Sal xx