Any Medication Advice?
Ok, I'm going to rant here..
I can honestly say that my family doctor knows nothing about Lupus. Almost 4 years ago I went to see my doctor because I was having some severe joint pain, and it wasn't going away. I was always tired and had many of the signs on Lupus. I can remember now having the butterfly rash when I was in grade school (age 13-14), photosensitivity, joint pain (mild though), mood swings, you name it, i had it! Anyways, The pain was getting worse and I couldn't take it anymore so I went to see my family doctor. First she thought I had mono, which I did not. Then she thought it was this and that and everything under the sun. she even thought i might have leukemia. So after many tests, my blood work came back a little 'off'. My mom had mentioned getting a second opinion so I went to see another doctor who thought I had SLE or fibromyalgia.
My doctor had even told me that she didn't know much about Lupus. My mom had sugggested seeing a specialist. NOW: Here i was, a 15 year-old Canadian. So we make an appointment set for the NEXT YEAR! that's right, it took me a year to get in to see a specilaist.
In London, the specialist told me I have not only Lupus, but Fibromyalgia as well. (thank goodness there's a smart doctor out there). however, she did not want to label me as havign Lupus at such a young age. She wanted to see me develop more and come back to see her.
So I have not seen thiss doctor for 3 years now. My doctor has said a few times that she would call to make me an appointment, but it never happened. So now, next week, I will be going to see my family doctor and making it very clear that i better have an appointment in London - SOON.
I have tried EVERY non-steroidal anti-inflammatory, pain killing drug there is and none of them have worked. My mother and I suggested prednisone and she looked at us like we were on glue or something! She said 'oh no, Bianca should not be put on prednisone, the side-effects are too dangerous (hip damage, blah blah blah) but we said, we didn't care. I would deal with it later in life if it came to that, but right now, in the present, I can't deal with the pain and effects of Lupus.
She didn't want to hear it, so I'm waiting on my appointment for London, which without a doubt, will probably be for next year.
If anyone can please tell me if they had to go through this with their doctor as well, and what kind of meds they found beneficial, that would be GREATLY appreciated.
Again, sorry for the long rant, I needed to let it out!
Thank you in advance,
I'm sorry you're experiencing such a frustrating time getting diagnosis and treatment. I know that's a common experience. Diagnosis is sometimes the most difficult aspect of the disease and can take a long time. You DO need a specialist, sounds like, to help you get a proper diagnosis and treatment. Lupus and fibromyalgia can look like so many other things. General practitioners are often not comfortable making a diagnosis or prescribing meds that are used to treat lupus (mine wasn't, but he had presence of mind enought to make a referral to a rheumatologist.) You'll have to be an aggressive patient, I think, to get the help you need. There are several Canadians who post on this forum frequently, and they may have some good ideas on how to best get the care you need in the Canadian medical system. If you do indeed have lupus and fibromyalgia, then you really need someone who can help you treat those illnesses soon. Lupus can have serious implications if left untreated. I hope you find the right doctor! Please check back here often. There are so many knowledgeable people who post here. I know you'll find some good advice, and lots of support. Be well, Bianca.
UWO Lupus Clinic
I had a similar experience with my gp. She was brutal - my obstetrician ended up diagnosing me. I am Canadian, living in Ottawa. My rheumy is great. His name is Gunnar Kraag at the Ottawa Hospital arthritis clinic (riverside hospital) . He has an A-1 team behind him. He doesn't like prednisone either but says he has seen some cases of Lupus that just require it in some small dose. I know there is a lupus expert at Western. A few years ago when I was researching the best places to go I came across the UWO doctor. I can't find the name but if you do some research on it and come up with any names - post them and I will see if I recognize. I called them and had an appt. booked within 2 months. I cancelled it but they seemed keen to take on my case. If you think you can travel to Ottawa, I can try to get you in to see Dr. Kraag as soon as he can take you. Good luck. You need good care.
Thank you Kelly!
I live in LaSalle, just next to Windsor. I wish I could go to Ottawa, and at this point I think my parents are willing to send me there if the best doctors are out there!
The specialist I see is Dr. Pope. She's nice, but I only saw her once a few years back. I'm trying to get in to see my family doctor tomorrow, but likely, I won't be able to because I swear her secretaries take the phone off the hook for 3 hours straight.
I will definately get back to you though!