Just Diagnosed

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Redheadtemper
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/18/2009 7:38 PM (GMT -7)   
This was my Christmas present (2008), though I wish it had a return receipt...My main area of problem is the kidneys, and joints...I stand all day at work, which doesn't help (and no I can't sit on the job, I'm a pharmacy technician), I'm still trying to research and understand what I have and what the future has in store.  I haven't even told my family yet.  I just had my second round of blood work, and see an ophthamologist on Friday.  Any comments or ideas would be greatly appreciated.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/18/2009 7:56 PM (GMT -7)   
Hi Red, welcome to the board. I am sorry you have been dx with lupus but you have come to the right place. There are wonderful people here who offer encouragement and support. We laugh, cut up and even cry sometimes, the important thing is we truly understand what others are going through and we do our best to support one another.

Since you are seeing an ophthalmologist I assume you are getting ready to start Plaquenil? Plaquenil is a good med, it works well for fatigue and joint pain. It's usually the first drug used to treat lupus. If it controls your symptoms that is great, if not your rheumy may have to add some more meds until you get the right "cocktail". Even then you may not be symptom free, I'm not.

Dealing with your illness alone is not a good idea, if you need help explaining it to your family and friends there is a great story out there called "The Spoon Theory", you can find it at www.butyoudontlooksick.com/the_spoon_theory/

Be sure to take a look at the post "Lupus Resources", there is a lot of good info. Please tell us more about yourself and feel free to ask more specific questions. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Redheadtemper
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/18/2009 8:12 PM (GMT -7)   

You're right, I am on Hydroxyquine 200 mg 2/day which I started in Dec, when I was first told the DX.  I am also on Celebrex 200 mg/day and Tramacet 2 q4h prn (sorry Pharmacy talk is normal for me)

DR first thought is was RArthritis, but ordered blood work, and my #s weren't good at all.  But I trust in Him and will take this one step at a time with His help...

Thank you for your encouragement, and I will check out the links that you recommended.   Red blush


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/18/2009 8:21 PM (GMT -7)   
I have heard wonderful things about Celebrex, I couldn't tolerate it at all, I hope it works well for you. Don't worry about the pharmacy talk, that might come in handy around here, lol

It's good you trust your doctor, it sounds like you have a good one, these days that's hard to come by. I look forward to getting to know you.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


nestle
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/19/2009 6:07 PM (GMT -7)   

Hi,

Sorry to hear about your lupus with the problems being kidney and joints.  What type of kidney disease do you have.  There are different classifications and usually with lupus nephritis, immunosuppressive medications are needed in the treatment.

Prednison, cytoxan, and Cell Cept are the most common for Class III and IV kidney disease.  Have you had a kidney biopsy?  What is the results of your 24 hour urine for protein and creatinine clearance?

I have had kidney disease from lupus for 20 years.  I have diffuse kidney involvement and in the past had been treated with high dose prednisone initially.  I had a blood clot and was unable to get a biopsy so they went with prednisone alone.    Later I had the biopsy and the treatment changed to Cytoxan/prednisone...NIH protocol.  After several years of being okay, my kidneys flared again. I did my own research and I went to Germany for a more aggressive treatment with Cytoxan which put me in remission for the 10 years but my kidneys have flared again recently.

I am now on Cell Cept and my rheumatologist is closely monitoring my blood work.  I am hesitant to do prednisone again and am hoping that the Cell cept will control the inflammation.  I am getting weekly blood tests/urine tests.

Your kidneys are not something to mess around with.  We do have alot of extra kidney available so thats the good thing for us.  Without treatment the outcome is not so favorable.  Don't be afraid to ask your doctor questions, do your own research as well. 

If I can be of further assistance please don't hesitate to ask. 


Redheadtemper
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/19/2009 10:41 PM (GMT -7)   
Thanks for the information. I see my specialist on the 2nd and my reg doc on the 17th. Have just recently "made the connection" regarding the kidneys and will require further testing etc. to see what the options are.
Redheadtemper


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/20/2009 1:39 PM (GMT -7)   
Hi Redheadedtemper,
 
I love your name by the way. I'm a red too, and the name is fitting :)
 
With your job, you're standing under fluorescent lighting aren't you? 8 or more hours a day?  Guaranteed, that the lights are not helping your situation. 1 hour under those lights is equivalent to 15 minutes of direct sunlight.  And we know how terrible the sun is for Lupus.  We almost have to behave as though we're allergic to it.  I know you're still learning a lot about your disease.  This is one area that must be recognized early, addressed and action taken to limit the exposure. 
 
The other members have given you great advice and links.  Let us know if you have any questions. Any at all!
 
Blessings,
Ginny
 
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/21/2009 4:53 AM (GMT -7)   
Hi red, I just saw you were new here so I don't really have much to say. It looks like you got a lot of info from the others here. I just wanted to say hi welcome to the group. I know you will get a lot of support here. They are a great bunch of people. Hang in there. No one knows what their future has in store even if they are rich gogeous and healthy as a horse. All we got is today.
Keep us informed
hugs
carol
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 

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