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Better Quality of Life with Lupus

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Old 10-01-2007, 05:52 PM   #1
Join Date: Oct 2007
Location: Cleveland, Ohio
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phatchamp HB User
Better Quality of Life with Lupus

My friend is 28 years old and she has a significant family history of lupus. She has experienced symptoms since the age of 16. She had previously worked with a Rhum. that was willing to see the big picture and provide her with medication for her pain. Since that time though her Rhum. has moved out of state and she has been unable to find one that is willing to diagnose the disease does she only meets 80% of the criteria. She struggles with constant pain and fatigue, however it has to get to the point where she needs to visit an emergency room to receive steroids.

Unfortunately, after spending such a long time in pain unable to find relief, she is begining to lose hope. I am trying to help her with this issue and while there is a lot of information available about the disease there is a limited about of things that can be do to relieve the suffering when a Rhum. will not diagnose or medicate.

First, does anyone have a recommendation for a good Rhum. in Cleveland Ohio?

Also, if anyone can provide me with anything that she can do to help relieve her pain and suffering. I am willing to accept any information, whether it be diet changes, exercises, natural remedies, anti-inflamitory gels, any information would be appreciated as I am greatly concerned.

Thanks ahead of time.

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Old 10-01-2007, 09:09 PM   #2
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Re: Better Quality of Life with Lupus


I want to say that you are a great friend for trying to help her through this difficult time. I don't know of any doctors in the Cleveland area, but your friend might want to consider finding a Rheumie in a teaching hospital.

My former Rheumie started me on Plaquenil and after four months I noticed a dramatic difference in my joint pain and fatigue. I hope that she can find a doctor that can start her on a treatment that will give her relief and help to boost her spirits.

There is a book by Dr. Daniel Wallace, "The Lupus Book", that has been very helpful to me. You may also want to check out the sticky posts at the top of the postings for more information on diagnostic criteria. I wish you both the best and keep us posted!

Old 10-02-2007, 12:30 AM   #3
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Re: Better Quality of Life with Lupus

I am much in the same boat as your friend - and I think you are wonderful for trying to help her in the way that you are!!!

I can't recommend any rheumys in that area, but I have one who is prepared to prescribe an antimalarial (which is hugely beneficial) based on a "lesser" (no offence to anyone) diagnosis of Mixed Connective Tissue Disorder (MCTD) or Undifferentiated Connective Tissue Disorder (UCTD). It is basically a crossover of autoimmune symptoms (in my case I have some really specific Lupus symptoms but not the bloodwork to match).

Based on the experience of people on this board, getting to a reputable teaching hospital can fast forward the diagnosis by years, so maybe that is an option that it is well worth pursuing?

best wishes

Old 10-02-2007, 03:03 AM   #4
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Re: Better Quality of Life with Lupus

Hi. Your friend has a very good friend! I want to add a few things about meeting lupus criteria:
1. For systemic lupus (SLE), you don't have to meet the criteria all at once. Think of checking each off in indelible ink. So having old medical records can be very important. Also, a dr. should take a thorough *lifetime* medical history.
2. There are kinds of lupus OTHER THAN systemic for which you don't have to meet 4 or more criteria. You may meet fewer, and/or symptoms may differ somewhat from those seen in classic SLE. I ended up being diagnosed with the SCLE "subset" (subacute cutaneous lupus erythematosus). My suburban drs. failed to recognze this subset, despite my having many signs of lupus. So in the same vein as what Georgie says about UCTD and MCTD, your friend needs a dr. who knows lupus in all its guises.

For what this may be worth to your friend... Why don't you also introduce her to the Board here? Best wishes to both of you. Sincerely, Vee

Old 10-02-2007, 05:02 AM   #5
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Join Date: Aug 2006
Location: southeast Indiana U.S.A.
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realisticchic HB User
Re: Better Quality of Life with Lupus

I found my rhuematologist through the Lupus Foundation of America. They have a link to the American College of Rhuematology with a list of Drs. who are Lupus literate. My Rhuemy is also at a teaching hospital.
As for home remedies, for joint pain, I use a rub called tiger balm, it really seems to work well for me, I also installed a "rain" shower head, so that I can get large quantities of moderately warm/hot water onto my body, with less force than a regular shower head. I shower early in the morning, to help relieve the stiffness from getting out of bed. Wear sunscreen, even on days you don't think you need it. Sunlight exposure can cause rashes and kidney trouble with or without a rash in me, it also can make me fatigued and achey. That is all I can think of right now. I wish you and your friend the best, and hope you are able to find a Dr. soon.

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