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vicliz

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 #1 
Since finding out I'm positive for speckled pattern ANA with positive SM/Rnp antibodies Ive been trying some different things to manage.  Acupuncture has definitely helped with pain and change with Bone Broth diet is giving me a full nights sleep for the first time in many months.  I just cant get past the muscle weakness and lack of endurance.  Can anyone tell me if Plaquenil helps with those two things?  Or any other treatment for that matter.

Thank you,
Vicki
upstater

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 #2 
Hi Vicki :)

Plaquenil is supposed to help with fatigue. I have been on it 3 months, but have not really had an issue with fatigue, so I can't personally attest, but have seen others positive reports. I haven't had muscle weakness, as much as I have had muscle pain - like much of the time my thighs feel like I went running yesterday after not running for a very long time.....except I haven't. Oddly enough, they don't hurt today. I also get wrist/hand pain, but that also seems better right now.

Rheumatologist said lets give it some more time. Hoping it will help some vascular stuff....though not sure if it is supposed to help with that??
vicliz

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 #3 
I was hoping to get a response from you, Upstater.  I remember you stating you are on Plaquenil.  I'm feeling pretty discouraged.  It's gotten so the symptoms are on more then off these days.  I can't believe I went all those years and now it's trying to take over my life.  I'm going to give the diet some more time.  It has been amazing how much better I'm sleeping.
Thank you so much for responding,
Vicki
Robinj

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 #4 
Plaquenil takes 3-6 months to build in the system before you may see improvement. Hang in there.
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upstater

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 #5 
Vicki...

Has your doctor tested your CK (Creatine Kinase) levels? Those are associated with muscle inflammation or damage. If those levels were elevated, prednisone is the usual first line treatment.

You might just have "regular" muscle fatigue, but it would be good to check, as treatment would be different, and you might not want to wait if there was detectable muscle inflammation/damage. What muscles are you feeling weakness with?

On another note, how do you get your bone broth? Do you prepare it yourself? I've heard how good it is for you, but have also seen powdered bone broth, and wasn't sure that was legit? Or if you had to boil it up yourself/no shortcuts.

Hoping you are having a good day!
vicliz

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 #6 
I think CK has been checked but I will look at past tests and make sure.  I'm seeing doc first of June and will ask her to order it along with other tests since this since symptoms have gotten worse. This couldn't be anything regular Unless there is a Lupus "regular". 

I made the broth out of venison bones after we had a deer processed.  Then I canned it.  I think the heat form canning broke down the gel so not sure how good it is but I'm drinking it anyway.  Plan on using whole chickens next so I can eat the meat also.  Dr. KellyAnn online has directions but I know that folks are using InstantPot to pressure cook with great results.  That will be my next purchase.

Thanks again Upstater.  I don't feel alone with your support.

Vicki
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 #7 
Right....there is no "regular". But I just meant fatigue without damage. It's all so confusing. Even though I know and say I am comfortable with the uncertainty in all this....I am still always trying to figure it out and solve it.

Hope you doctor appt goes well! Thanks for the broth tips!

Stay in touch....it's good to talk to you too :)
Baker1

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 #8 
If you cook a chicken and just use that broth that is not bone broth. You need to remove all of the chicken from the bones and recook the bones for at least 4 hours. There are recipes for different types of bone broths on the Internet.
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Robinj

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 #9 
Not any different than making stock. It needs to cook down to extract the marrow.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
vicliz

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 #10 
Hi Upstater,

Ok thanks for the clarification on the differences with muscle fatigue. 

You asked about the bone broth and I forget to tell you that Ive heard good and bad about the stuff you can buy in the store.  If I were to do that I wold need to research.  I think one good one is Prime.  Might not have that exactly right.

Homemade bone broth has to simmer for 12 hours to be bone broth.

Has anyone gained any knowledge along the lines of Th1 or Th2 cytokines?
upstater

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 #11 
No...I have not even heard of those....T-things ;-)

Maybe I'll boil up a carcass this weekend!
vicliz

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 #12 
Have fun with that!
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