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View Full Version : how long did the specialist say you would need to be on plaquenil!!??!!



giggle
06-10-2011, 07:35 PM
I have been to three different GPs now that ask the same thing.

Shouldn't they know?

Every single time I hear this question I have a four stage reaction...

stage 1. Surprise, I never expected this question
stage 2. I question myself... did the specialist tell me how long?
stage 3. Hope. Maybe if she is asking me this, it means I might one day be off the medication!?
stage 4. ANGER. Finally I remember what my rheumatologist said to me... that fateful day I was diagnosed. "You will be on this medication for life..."
I am furious that for a second I was given hope, that for a second I doubted myself, that in a second my GP proved to me they dont take my disease seriously or know the first thing about it or my medication.

I always pause. There is up to ten seconds of silence from the time they ask, to the time I answer.

"For life" I say, in a rather short tone. I immediately feel defeated.

Has anyone else been asked this stupidest of stupid questions by a health 'professional'?

Linda From Australia
06-10-2011, 07:48 PM
For a moment I thought you were asking us this. Then I thought, MY GOSH, I thought giggle would know that simple question.
Then I saw that you were talking about your doctors. Oh dear, that is a real worry!!!!

Peridot20_Gem
06-11-2011, 04:31 PM
Hi Giggle,

I've had all this total stupidity with different specialist's over the years they look at us like we're the ones losing our MARBLES and i think they just test you to see how fare you can go into remembering but what they dow realize is they're the ones making cock ups with us, it's so annoying mate. xxxx

giggle
06-11-2011, 04:44 PM
Its shocking isnt it Linda... and it hurts deeply every single time I hear that question. Makes me feel almost unjustified at first... and then angry. Common sense surely would bring anyone to the conclusion that a lifetime illness will require lifetime treatment.

I am buying a lupus medical reference. It will live with my current GP for now. When I move to Brisbane, I will take it with me and I will make a number of visits to various GPs asthough they were job interviews. I will give them my full medical history and documents and ask them if they are willing to take on a patient such as myself and my daughter, even though it means learning more about our conditions and working with specialists.
The successful GP will then become the new keeper of my lupus medical reference and will become my regular GP.

Terry... I've decided no more Miss nice guy : ) When I finally move to somewhere where I am not limited to a choice of one GP... I will hold interviews lol

Peridot20_Gem
06-11-2011, 04:59 PM
Giggle,

Fare play to you mate, i look at it like this it's our body's and when GP's or specialists are treating you because they're in the field for the work then they should go out their way to test the patient to the best of their possibilities and then when it comes to medication you should be told how long your on it for.
I don't blame you treating them as proper interviews either, i've been throwed off Doctor's books for speaking my mind and not letting them press the puzzer for the next patient.

I'm behind you 100% because i can see this lots got you down through it, it's made you more determind to get somewhere. xxx

Linda From Australia
06-11-2011, 11:04 PM
Giggle will you please message me the name of the medical book and where you got it from. It will help me understand Lupus a bit more, and also my GP has admitted she doesn't know much about Lupus. She did a big read up before I went to see her after I was diagnosed. I think I will get the book, and if I am sick and feel it is Lupus related, I could photocopy the relevant pages, or if it isn't too expensive, buy the book for her. She said that she has only one other patient with Lupus, no wonder she doesn't know much about it.

Peridot20_Gem
06-12-2011, 10:04 AM
Oh Linda how you are, you do need more of an experienced doctor behind you, so really before she's seeing you she's looking up also.

I do wish you the best with your Doctor besides getting the book if your able to.

tgal
06-12-2011, 10:17 AM
Although people go off of many of the meds as they get better, plaquenil is one most stay on for life. I know a woman in my town who was diagnosed in 1992. She is doing really well now but even she is still on plaquenil. You would think the doctors would know this

Peridot20_Gem
06-12-2011, 01:23 PM
Although people go off of many of the meds as they get better, plaquenil is one most stay on for life. I know a woman in my town who was diagnosed in 1992. She is doing really well now but even she is still on plaquenil. You would think the doctors would know thisWell Mari,
I really hope it's ok with me this time, i know i've only been on it since last thursday and taking it at night seems to suite me better, all i've noticed more is my temper is getting worse just talking to my hubby, good job he's got broad shoulders.lol

tgal
06-12-2011, 01:29 PM
Well Mari,
I really hope it's ok with me this time, i know i've only been on it since last thursday and taking it at night seems to suite me better, all i've noticed more is my temper is getting worse just talking to my hubby, good job he's got broad shoulders.lol

Terrie, I am not talking about people who have problems with it as you do. I am talking about the rest of us that don't really have much trouble with or or those that are able to get the stomach issues. Those that have trouble with it will not, of course, stay on it forever

Peridot20_Gem
06-18-2011, 04:33 PM
Terrie, I am not talking about people who have problems with it as you do. I am talking about the rest of us that don't really have much trouble with or or those that are able to get the stomach issues. Those that have trouble with it will not, of course, stay on it foreverMarie,

I know what's being stated and it helping people for such a good while and me mentioning side affects..is refering that i also want to be like yourself and other's keeping on the drug for years and so fare i'm just pleased that i've not hit the stage where i was before.

As the drug is good in so many ways and i'm pleased it's working that way so fare and i'm hoping for the future it keeps that way.

giggle
06-21-2011, 01:49 AM
sorry guys I forgot about this thread!
I will PM you the book and where to get it from, it isnt cheap... but its the cheapest of the medical references. It isnt the most upto date... but it doesnt absolutely have to be if you want to cover a lot of the basics your GP should be looking into. I havent bought it yet, it is pricey. : )

Gizmo
06-21-2011, 05:11 AM
Giggle will you please message me the name of the medical book and where you got it from. It will help me understand Lupus a bit more, and also my GP has admitted she doesn't know much about Lupus. She did a big read up before I went to see her after I was diagnosed. I think I will get the book, and if I am sick and feel it is Lupus related, I could photocopy the relevant pages, or if it isn't too expensive, buy the book for her. She said that she has only one other patient with Lupus, no wonder she doesn't know much about it.

I have The Lupus Book by Daniel Wallace, MD. He actually has actually revised it twice since I was diagnosed 12 years ago, so make sure you get the most recent edition. It is the only medical text book written specifically on lupus that I have been able to find. On Amazon I think it is around $30. Some chapters seem a bit incomplete to me, but at least it's not just a chapter in another text book.

rob
06-21-2011, 05:43 AM
I have The Lupus Book by Daniel Wallace, MD. He actually has actually revised it twice since I was diagnosed 12 years ago, so make sure you get the most recent edition. It is the only medical text book written specifically on lupus that I have been able to find. On Amazon I think it is around $30. Some chapters seem a bit incomplete to me, but at least it's not just a chapter in another text book.

It is a bit sparse in some areas, but overall, it's a decent book. Although there is some missing information, there's no bad information in it. Dr. Daniel Wallace is a fairly sharp guy on the subject of Lupus.

giggle
06-24-2011, 02:19 AM
I have that as well... but need an actual medical reference for the doctors.
The lupus book is a bit... simple. I have read reviews, they typically say that it is easy to understand.
Well Im not going to touch a book with reviews that say 'easy to understand' ever again. I think it is a common thing for people to say when they have a bit of trouble understanding medical terms and concepts. I am far from uncomfortable with medical terms and language.
I rather find the language used to make a book 'easy to understand' underwhelming... condescending... and hard to even bother reading. I would recommend it to newly diagnosed because any info would be like gold to them... but I think Im at the stage now I am looking for answers that only something rather intensive would be able to give me.

I really do wish circumstances had led me to a medical profession LOL

lovedbyHim
06-24-2011, 02:54 AM
Hi giggle, you make me smile. I wanted to be a psychologists, but lots of babies and illness changed that. You are so smart, use your gifts and grow in spite of circumstances as best you can I am old and sick but I keep learning. I have to keep going to trainings in order to keep my certifications. I also have a learning disability, but I never let it stop me. Not even brain fog! Determination girl! I can't be a psychologists, but I can be the best psych rehab specialist I can be. Just a little cheerleading here (grin). You could become an advocate for people with lupus!

Peridot20_Gem
06-24-2011, 07:45 AM
Hi Giggle,

You made a good point refering (I am far from uncomfortable with medical terms and language) because when i see doctor's and they use the medical name for meds...i always say, come out and say the other medical name which patients know i.e Carbamazepine is Tegretol but oh no they have to use Carbamazepine because they think they're throwing you off meds you dow understand.

I hope your feeling abit better today mate and holding your chin up. xxxxxx