[KarolH]

Hi everyone,

I just got back from my appointment and I am a little annoyed.

The Rheumy doctor told me that all of the blood work she did last month was normal. She did say that clearly I have markers that point to Lupus based on Mays blood work and clinical presentation.

She ask me how I was making out on generic Plaquenil and I told her other then feeling sick to my stomach I am taking it as prescribed. She wrote a new script for Plaquenil instead of the Generic brand Hydro.........whatever and told me it has less side effects.

Then she asked me how I was feeling in general. I told her about wide spread pain and severe fatigue which is the norm for me. I mentioned to her that I am in need of a new script for Percocet and Provigil for pain and fatigue and she told me I would have to get my primary doctor to write those...she doesn't.

I told her that my Neurologist is the one in the past who has written for these meds and I no longer see him because now it is Lupus and not Multiple Sclerosis and now I see you, THE RHEUMATOLOGIST.

Her attitude was sorry, can't help ya and don't write scripts for narcotics or provigil..................STRIKE ONE!!!

Then she told me that she reviewed my nerve conduction studies and other medical reports I photo copied for my file and after looking over them after last month appointment nothing indicates Lupus but more so nerve damage.

So I said, "Well are you sure I have Lupus"? She said NO but take the Plaquenil, come back in 3 months and we will go from there. If you do have Lupus you should notice some difference in 3 months time......and out the door she went.

I can call my primary doctor or previous Neurologist and they would gladly write a script for Provigil and Percocet but am I out of line in thinking that my Rheumatologist should do this for me?

Why should I have to go to 2-3 doctors to get what I need? Makes no sense and I am pretty annoyed right now..............wouldn't you be?

 

[greenhaggis]

Just wanted to send you a big hugs!


Lesley

 

[Nutty]

That's the way it is for me too. The Rheumatologist will only write prescripotions for drugs related to Lupus. All other prescriptions have to come from your GP.

I also had the reverse happen. I was at my GP and I needed a prescription for methotrexate. And you guessed it, he is not allowed to write a prescription for it. However, the GP has a little more flexibility because he can write a prescription for many of the drugs that are used for other reasons, such as prednisone, folic acid, fosamax, etc. I think it just the toxic stuff they can't prescribe.

I know it is frustrating, but we're stuck with it. I'm not sure where you are from, but I'm in Canada.

Nutty

 

[KarolH]

Nutty I am in New Jersey.

 

[Katharine]

:hissy: What? !!!!!!!!!!

Sorry but that is mad. I mean silly, daft, ridiculous MAD!

First off, a rheumatologist should be dealing with your pain if you are his/her patient.

Secondly, I don't see where she has decided all on her own that if it is lupus you will see a difference in three months with plaquenil. Some people just DON'T "see" that difference, some people need additional meds, plaquenil can take longer to kick in...

I mean, all very well and good, they may not be sure 100% what is up but something is and a sort of "wait and see" with 100% reliance on plaquenil, very odd.

Katharine

 

[sjink]

Hi Karol

In the UK in my experience the Rheumy will write a script for new disease modifying drugs (Plaquenil etc) or specialist area drugs (like anti-depressants) when it is a first time script. But he would write to the GP saying that maybe my pain meds need reviewing. After the first month's supply the GP then would then prescribe the drugs the rheumy has started me on. I have never ever had pain medication off the rheumy only specific lupus or arthritis medication prescriptions.

Perhaps you got pain med of your neurologist because pain meds have a different link into that specialism. Every country and state seems to have different rules. Of course you pay for all your meds anyway in the States I think so the system may be different.

Not sure if this helps.

I think with the "maybe" and "wait and see" diagnosis with the bloods having gone from indicative to normal then waiting and seeing how you respond to Plaquenil is probably a good idea. Some rheumy docs are more cautious than others. And there are a lot of auto-immune disorders out there.

Hopefully after 6 months or so on Plaquenil some of the fatigue will lift. It is so slow acting.

Horrible when rheumy appts. leave you feeling like this.
Sorry you feel so rotten so sending you some flowers for the weekend )
:foryou:ansy::foryou:ansy::foryou:

Love
Sara

 

[Surferboy]

Karol, I'm sorry that you have such a confused / inept Rhumy. Can you possibly ask to change to another Rhumy?

 

[KarolH]

Thanks everyone.

I called my pcp and will go see him next week.

I will get his opinion on todays events.

He and I have a great relationship and he will share his honest feelings with me.

Sarah...I have just never come across this situation before where I go to a doctor for treatment and yet I am told I have to get necessary medicine that I have already been on for years from a different doctor. Maybe it is normal in the UK but I have just never run into it before here.

Surferboy...I am already putting my feelers out there for another Rheumy. I think my pcp is going to flip when he hears this. I am too sick and too tired to have to run to different doctors for necessary medicines.

 

[Mrs M]

Hi Karol

What a nightmare!!!! Such appointments leave you feeling completely deflated I know as I've had a few recently

Hope you're feeling a little calmer now and that your appointment next week goes well. Chin up

:grhug:

Let us know how things go.Take care

Mrs M x

 

[Maia]

There is such an issue these days with doctors being held responsible for medication scripts (especially for narcotic drugs) that many doctors will NOT prescribe them for you on a first or second visit (or ever). Instead they will refer you to a pain management doctor or your GP. The only narcotic pain med I've ever been prescribed by my rheumy is Tramadol.

The rheumy department where I go on a whole will not prescribe provigil due to limited evidence it works and fear that it could on the whole make things worse since if it does give any feeling of energy, it may be false energy and you should be listening to your body and resting when it's telling you to rest.

As to her curt manner with you though, I would be offended by that to be sure (leaving the room while it seemed you were still asking questions). I would be mad about the uncertainty of diagnosis too, but can see where she is coming from as well with a case like yours that is just not clear cut.

The good news is that she isn't completely dismissing you and will continue to treat with Plaquenil and see what happens in the future. Overall, I think fairly appropriate. I wouldn't dismiss her just yet...

 

[Katharine]

Well that policy certainly explains some things.
Obviously they do things very differently here. I suppose all systems are different with their advantages and disadvatages.

Katharine

 

[Blue*Mist]

I just want to pop in and tell you what I do with my used to be 3, now 4 specialists...
I go in with my list of questions concerns as most of us already do... When I feel like the doctor is getting ready to cut me short ... I gently walk to the door and stand there in front of it ! I'm not rude or curt but they quickly get the hint, that I'm not quite finished.... I'm very nice about it and sometimes get them to laugh with me ... I don't care if they think I'm crazy, I just say.. "well, I don't want to have to call you a lot, we should cover it now".. I feel like I've 'trained' them all to ask me "Do you have any other questions for me today ?...........It's prolly on the chart... LOL :lol:

Long ago, I learned the hard way not to leave that room until I'm satisfied... after doc said... "Oh you'll be fine ", you just need to drink more water.. LOL I fainted in a wtg room and rushed to ER, very dehydrated/fever and a concussion from hitting my head on a chair in the wtg room... I was not happy... hubby was ready to belt someone... LOL

 

[Raglet]

Sounds like you had a frustrating visit - some doctors have no 'bedside manner' at all. There is no excuse really, it is just a personality thing I think. However, I have had the odd 'rude' doctor who I have tolerated as they have been such a good doctor that at the end of the day I got a good deal from them, it is really a case by case thing.

Often rules that are set up for drug seeking patients hit people who are needing to use drugs legitimately - often doctors nominate one doctor to prescribe narcotics so a person can't double dip and get multiple prescriptions for narcotics. So you are probably paying the price of other peoples drug seeking behavious.

I get provigil from my neuropsychiatrist although I am very limited to how often I can take it as I am very neurologically fragile and that stuff is like rocket fuel. With lupus the name of the game is multiple doctors - I have a gp, rheumie, neurologist, neuropsychiatrist, vascular surgeon plus others are added in when needed (neurosurgeon etc).

Given that you have neurological problems you still should be seeing a neuro as well as your rheumie. In your shoes I would just keep seeing your previous neuro - he should still be able to treat you even with your change in dx.

hth

raglet

 

[KarolH]

Thanks for your replies. I do feel better knowing I was not singled out here and that it seems common practice amongst most doctors.

Anyway, I will still see my Neuro but not as much. He only wants to look at me once every 6 months now.:rotfl:

Thanks again for your input here. I have found myself feeling very angry today and I do feel better now.:wink2: