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sharpiessave
05-19-2011, 04:20 PM
I'm quite newly diagnosed, and wondering how to balance the relationship between my primary care provider (like him) and my rheumatologist(love him!).

I had a really bed experience with my last family doc. I gave him way too many chances to tell me I was crazy. So about a month ago, I switched to a new fella. He cares a lot, and spends excellent amounts of time with me. He lets me ask questions and really listens. But I went to see him today, and told him about my Rheumy putting me on Plaquenil and a tapering dose of Prednisone. He hates that I'm on steroids, and he really wants me off of them. He suggested that instead of tapering by the week, as my rheumy prescribed, I knock the doses down every 3 days. He also said, "You know, Plaquenil really weakens your immune system." I wanted to scream, "THAT'S THE WHOLE POINT! SO IT STOPS TRYING TO KILL ME!"

My main problem right now is the question of who to obey. I'm afraid, since the Rheumy is my hero, and he's telling me all the things I've been longing to hear for a year, that I'm ignoring valid points from the PCP. On the other hand, the PCP obviously doesn't have a lot of experience with patients with autoimmune diseases.

Have any of you had this problem? Any suggestions on how to mesh these two very different docs into one treatment plan would be much appreciated. Thanks!

Sharpie

rob
05-19-2011, 04:52 PM
Good question,

It sounds like you have a good rheumo (they are hard to find), and that you trust his judgement. Although many PCP's do cross somewhat into rheumo territory, and can be very helpful that way, I think in this case you should stick with the rheumo's orders and meds. Rheumotologists are technically the specialist who will diagnose and treat most autoimmune disorders, including Lupus. And, it sounds a bit like your PCP doesn't quite have a handle on the subject of immunosupressant drugs and their effect on patients with autoimmune disorders.

You could maybe tell the PCP that you appreciate his concern for you, and his cautious attitude about the meds you are on, and that you will not forget his warnings, but for now, you are going to stay with the plan the rheumo has you on. Anyway, that's just my opinion. Let's see what some of the others here think.

Rob

tgal
05-19-2011, 05:05 PM
I have to agree with Rob on this one. Few of us get lucky enough to find a great Rhuemy and it sounds like you have one. The PC is correct in the fact that steroids are not good for us but the Rhuemy is correct that often times we need that. You said it PERFECTLY with your comment about needing it to weaken your immune system (it actually made me LOL). Since it appears that you have a really good specialist I would listen to him. Sounds like he has a handle on this and that is what you want. If the GP doesn't like it then go get another. Those are a dime a dozen! As long as you have one good one on your side you have a leg up on many here.

Merrilyn OZ
05-19-2011, 05:30 PM
Definitely stick with your Rheumy's recomendations.
I have been on Prednisolone for 40 years and my Rheumy has put my on Methotrexate so I can reduce the Pred levels I'm on 10mg and he has me reducing it by 1/2 a mg a month (Know this sounds very drawn out but I've had mobility problems when I tried reducing before)Wants dose down to 7mgs.
I have to agree with Rob and Mari a good Rheumy is worth their weight in gold, GPs are generally not as well informed on Lupus

steve.b
05-20-2011, 05:20 AM
what else can i say, ...............................................

listen to the wise ones..

Saysusie
05-21-2011, 11:55 AM
Ditto what Rob said
Ditto what Tgal said
Ditto what Merrylin said
Ditto Steve's saying "What else can I say?"

From your own knowledge of Prednisone and its use for Lupus, and from the knowledge of your rheumatologist....you have made the right decision about remaining of the dosage prescribed by your rheumy.
You should also know (and consider) that, for many, tapering too quickly on the Prednisone actually can cause some symptoms to re-appear and/ for them to worsen and for new symptoms to crop up. So the slower the taper, the better!

I wish you the very best
Peace and Blessings
Namaste
Saysusie

ruziska
05-21-2011, 01:47 PM
The rheumy is a specialist in a particular field. Your pcp is a "jack of all trades" which is good for generalities but he's not an expert on the subject of Lupus nor is he supposed to be that's why he's a pcp and not a rheumy. So listen to the rheumy. However, if it is a battle of the egos, suggest a time and place, have them duke it out, sell tickets and raise money for charity! Just a twisted thought...

rob
05-21-2011, 02:44 PM
And of course, if all of these ideas fail, a light saber duel to the death is always entertaining. When in doubt, let their knowledge of The Force determine their destiny...

tgal
05-21-2011, 08:46 PM
And of course, if all of these ideas fail, a light saber duel to the death is always entertaining. When in doubt, let their knowledge of The Force determine their destiny...

LOL Rob! You always make me chuckle. Thanks for that

rob
05-21-2011, 09:57 PM
LOL Rob! You always make me chuckle. Thanks for that

Ah, it's just my inner sci-fi geek rearing it's ugly head.

Peridot20_Gem
05-22-2011, 10:45 AM
Hi Sharpie,

Go with your Rheumo mate, he knows his field of work by what your saying plus listen's to you and knows the meds as that's is main field of work, i wished i had someone like that. Well mines given me my results and i get extra info from my dermo but regarding stepping in on my meds it's the neurologist who as the final say, when they finally sort me for meds.

sharpiessave
05-22-2011, 05:52 PM
I spent the first part of my day chuckling in the shower, imagining my docs meeting at the flagpole after school. My Rheumy would ball his tiny hands into tiny fists and say, "Let's go, fella!" And my PCP would respond, "You know, Doctor, fighting can hurt."

Peridot20_Gem
05-24-2011, 10:07 AM
Sharpie,

It's lovely to hear some sense of humour mate on the forum, cheers we all up and i surpose it does make you wonder when you've got one going against the other.
It's like when i went on the plaquenil my GP and rheumo was ok with it but oh no my neuro put an alert out on the doc's saying it may increase my seizure's, they can be b.uggers sometimes without you knowing.