Wellness

[marryone30]

Take care of your health.

[PamfromCT]

@LilacTree, I am sorry for all of your challenges, but I am so happy that you have found a doctor who has diagnosed you and will direct your care.  You have a great attitude, and I am confident you will do very well going forward.  

Please continue to to let everyone know how you are doing.

Wishing you my best,

Pam

[Harvard99]

@LilacTree  I've been following your health issues for a while so thanks for this update.  You probably have such mixed feelings.....a new and difficult diagnosis but also finally knowing the reason why you've been feeling so ill.  I'm sorry.

It sounds like you have found a great doctor.   I hope you're feeling better and better now that you have good rapport with a physician.  That can make so much difference with any health challenge.  Take good care of yourself

[LilacTree]

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@sydsgma1 wrote:

Sorry to hear this, Lilac Tree . I am a bit surprised about the long wait to see the dr. I have had lupus floated around for a while also. It is not curable but treatable. ((((Hugs))))

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@sydsgma1 

How do you deal with the fatigue?  I’m used to the pain, I’ve had it so long with rheumatoid.  It’s the constant exhaustion that frustrates me.  I am hopeful that the treatment will improve that.

If you don’t mind, since I won’t be able to see the rheumatologist until August, can you reveal what meds you are on?  I certainly understand if you are uncomfortable with doing that.

[GraceLady]

@Ketra  Thank for posting the information regarding Drug-Induced Lupus.  So many people (and doctors) are unaware of this.  My rheumy/immunologist pulled me off some medication and retested me for Lupus.  My PCP was unaware of the possibility of complications with my meds.  I was fortunate that I was still negative for Lupus.  This demonstrates the importance of seeing a specialist and not relying on your PCP.  

[CelticCrafter]

I find it shocking that you have to wait more than 3 months to see the doctor about this.

Although there isn't much you can do about it, it's not acceptable given the fact that it's a new diagnosis.

[Ketra]

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@GraceLady wrote:

@Ketra  Thank for posting the information regarding Drug-Induced Lupus.  So many people (and doctors) are unaware of this.  My rheumy/immunologist pulled me off some medication and retested me for Lupus.  My PCP was unaware of the possibility of complications with my meds.  I was fortunate that I was still negative for Lupus.  This demonstrates the importance of seeing a specialist and not relying on your PCP.  

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@GraceLady You’re welcome.😊 I’m happy to hear that you got off that medication in time. Even some specialists aren’t aware of this until you mention it. Rheumatologists know because the side effects of these drugs send lots of patients their way and of course it’s their specialty. I only rely on my GP for urine checks, flu meds if needed, and blood sugar tests. The rest I trust to my specialists. And I absolutely will not see a PA in place of a doctor. I will reschedule my appointment or go to an emergency room if it’s urgent, but no PAs. 

[sydsgma1]

@LilacTree  I deal with the fatigue by making sure I get good sleep..I take a med to help with this. It is not a sleeping pill, by the way. My dr uses my ra meds to treat me..when I get bad, I do a burst taper of prednisone. 

As with ra, there is no magic cure all but the right cocktail has to be found.i do a lot of meditation and relaxation things that help me a lot.

as I said before, I am still surprised at the long wait for a follow up,

(((Hugs)))

[LilacTree]

@sydsgma1 

The really good RA docs always have a gazillion patients. They are so few and far between.  Somone has to choose to have no RA doc, or a whacko who doesn’t even look at you . . . Or wait as I am waiting for the good one.

Who knows how long I’ve had lupus anyway.  Nobody ever did testing as she did, or examined me, etc., so I am choosing to wait.

I see new NP for the second time this Monday and she wants to talk to me about the labs the RA doc took.  Don’t know why, she didn’t even know what a Dmard was last visit!

ETA She is the one who prescribed the Macrobid for the UTI That wasn’t, but that may have given me lupus.  She obviously didn’t know that either. 

[goldensrbest]

Sounds like you have a good doctor now , one would had thought  someone would had tested for lupus before ,with the rash being there.