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elleinod
08-10-2009, 08:05 PM
Thanks for the perspective Jana.

I am in the throes of a big flare. I tried to go to work today and didn't last long. I have slept 14 of the last 24 hours and I am still exhausted. I am experiencing joint pain like I have never experienced before. I was barely able to concentrate enough to drive home this afternoon.

I was only recently diagnosed. Oddly (or maybe not) by my dermatologist with support from a PA in my general practitioners office and an initial visit to a rhumetologist. So here is my question-who do you call when you feel like this? My dermatologist prescribed the Plaquenil; she doesn't communicate well with my PA, who is my primary medical professional. I am at a loss and to be honest, not thinking clearly.

I am only on Plaquenil. Today I have taken a fair amount of Tylenol (I am allergic to motrin and nsaids)

leaann
08-11-2009, 05:22 AM
hello,

I have spent many years going to the dr and dealing with my illness... Have had many times when I needed to call about issues... which one to call... since you seem to be having lupus flares I would call the ruemy dr... I think he can be more help to you... even if you have had very few appointments with them...

If that doesn't work you can always call one of the other ones... Or maybe you can start with the one you feel more comfortable with that always helps with me...

just a thought
hope it gets better... keep us posted

Angel Oliver
08-11-2009, 05:43 AM
Oh i so understand you.I on many occasions have sat here and in pain thinking.....do i call my GP or Rheumi or maxofacial or dentist. I too never know for sure.Then i usually go for the GP.
I know you said your dont have much communication,but the GP should receive follow up letters of most of your appointments,or thats what happens here in the uk.
Hope you rest and begin to feel a little easier,the pain gets easier.Try calling your GP its a start.But dont just leave it.You need help and now.If the GP is the wrong person they should advise your who to call.Please know i care and i hope you make the call.

Love Amanda.xxxxxxx

rob
08-11-2009, 06:23 AM
When in need, I call the Dr./specialist who I get along with the best, and who I have the most confidence in. I have an awesome G.P., so he's first on the list, and I have a really good neurologist, so he's second on the list. Sometimes I talk to he neuro about non-neurology stuff, and he's always willing to help and give good advice.

mountaindreamer
08-11-2009, 07:32 AM
hi elleinod,

this is such a good question, and i am glad that you started this thread.

i agree with rod about calling the dr. that you have the most confidence in. However, i also wonder if you should call the rheumatologist, because there are ways that they can help with a bad flare. My rheumy has given me medrol (steroid) injections that have immediately taken me out of the flare....i am not sure if my g.p. would have done this. If your dr. can't see you right away, ask to see their nurse practitioner or physician's assistant. I can usually get in to see one of them in a day or so.


hope you find some relief very soon.

jcg196
08-11-2009, 09:39 PM
Hi,

I would call the Rhuematologist because they are informed about flares like mtdreamer said..however if its something like acne...i will go to a dermatologist. I also agree with Rob...go with someone who u trust and feel comfortable with. I think if you do have an immune depressn disease u should find a good Rhuematologist that u do feel comfortable with and I find that they can pretty much write u a prescription for what u need....

I hardly ever go to my Primary care physican because they dont have copies of my records from my rhuematologist...and i am too lazy to give the history and it would take tooo long LOL.

Hope that helps!

neL:yes:

ButterflyRN
08-12-2009, 01:33 PM
I generally stick with my rheum if it's related to the lupus!

elleinod
08-12-2009, 10:12 PM
Thanks everyone. That really helped. I called rheumatologist and then the GP.

I am just getting underway with a rheumatologist--and when I called, I learned the first appointment I could get with her is in two weeks. This will only be my second time seeing her.

I went to see my GP and she very very nicely told me she doesn't feel comfortable prescribing anything because I have been seeing specialists for it. The thing is, I gave my GP a phonebook-thick copy of my medical records when I started seeing her about a year and a half ago. She seems to be worried about stepping on toes while I sit in exhausted, achey heap in front of her. :skeptical:

Here is my plan (I feel better when I have one): I am going to deal with this flare and just rest as much as possible. Six months ago, I didn't know I could do something about feeling this way, now that I do, what is another few weeks? Positive thinking! When I do meet with the Rheumatologist I will start forming a better relationship with her and hopefully, we can get this undercontrol.

Have I mentioned how much I hate having Lupus?

Angel Oliver
08-13-2009, 04:50 AM
I am so glad yo read you made the call.I know its a very slow process,but you have us all here and i hope you come here often to see how we all gather round and help each other through the tough times.
I saw my rheumi yesterday,was'nt very productive i came away with nothing really.So be prepared that even though yet get your appointment it may not be sucessful straight away.BUT remember also,on this forum you will also find very sucessful stories,where appointments go right first time,meds are given diagnosis too.So as long as you know and are prepared you can get through anything.
Oh ive got many experiences.But i see the rheumi again in 4 weeks, so maybe then he will be a little more helpful.If not,because of the brave and strong who i call my friends here, they will advice me where n what to do.
Soo glad you made the call.

Hope today is an easier day,but if not just you rest and know we understand.

Love Amanda.xxxxx

Delphinia981
08-14-2009, 04:46 AM
I'm lucky...I can always call my rheumy. He is in touch with every other doctor I see...lets them know what is up with me, and demands that they do the same in return...so I'm never having to explain to another doc what my SLE treatment entails.