New Lupus Diagnosis - So Many Questions!

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Greetings I am newly diagnosed and after a brief summary of my experience with Lupus so far, I have some questions that I would LOVE answers to! Sorry if its long. Please just skim over the intro explanation and skip to the questions if you don't feel like reading. Its important for me to get answers  [smile]

As I said, I am newly diagnosed with Lupus - just today. My doctor said that my Lupus is the kind that is causing problematic symptoms that have severely affected my daily life, but is NOT attacking any organs (like the kidneys). I have positive ANA and various other positive Lupus and Sjogren's related tests, as well as chronically slightly low White Blood Cells.

My symptoms came on very fast: Extreme and debilitating fatigue, pain in joints and muscles, frequent fevers, many, many infections/viruses (one after another), dry eyes, canker sores and nose sores, rash in sunlight, sun/heat sensitivity, lower back/shoulder spasms, small things tire me out VERY QUICKLY, among other things. One day I was working 10 hour shifts and preparing to attend an Honors College, and the next I began experiencing symptoms that worsened over a few weeks and resulted in me quitting my job, withdrawing from school, and moving in with my grandparents temporarily to rest and get help.

Here are my questions:

1.) Today my doctor has prescribed me Plaquenil. This is the only med he prescribed me. Is it normal to be on only one medication? Are there any others I should ask about? Will this medication help my symptoms, particularly the fatigue, pain, and easy exhaustion?

2.) I read online that garlic, red meat, and alfalfa should be avoided if you have Lupus. Is this true? Has anyone experienced benefits from avoiding these, or consequences from NOT avoiding them?

3.) My doctor said that my Lupus "wasn't the kind that is attacking my organs, but is very symptomatic". Does this mean the Lupus will likely never attack my organs? Like I won't need to worry about Chemotherapy, kidney transplants, immunosuppressant treatment, etc?

4.) Are there any lifestyle changes I should make to ease symptoms and keep them minimized long term? Are there any vitamins, supplements, or herbal remedies that are good for Lupus symptoms or maintenance (living with Lupus)?

That is all I can think of for now. Sorry for writing so much! I really hope somebody reads all of this so I can get some answers from someone with experience!

Thanks,

CM  [smile]

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8 Replies

  • Posted

    Hi cmmmusiclover. I was diagnosed with cutaneous lupus last September. My symptoms are very similar to yours.

    1. I am on Plaquenil 400mg and prednisolone 5mg. My joint pain almost disappeared one month after beginning medication but my fatigue continues and muscle stiffness and brain fog as well. My rheumy said I should be patient because only after 3 -6 months do we feel better. It takes time to work out.

    2. I am sure that this disease was triggered mainly by food intolerance and digestive problems since I can't eat like my family without bloating, swelling, feeling my stomach is always full even after eating tiny quantities of food. I avoided gluten since August. But my swelling was still there. So I decided not to eat any grain at all and three days after my body began to respond agreably to this. I eat lot of vegetables, fruit, wild fish, meat ( twice a week and rather prefer quality red meat as it is for me tastier as poltry), flaxseeds as cookies, olive oil, onion, turmeric and ginger, cats claw, thymian tee. I read sth anout garlic activating the IS which is already hyperactive. So I am not sure about this.

    3. From what I know you can control the disease before attacking other organs. But this is sth I also worry about. I am also new to this. And have many unansered questions as well. I am on a sick leave and try to listen to my body. This takes me to point 4.

    4. I changed my pace. Decided to know what triggers the disease so that i can control it. I keep a diary and photos of rashes, bruises on my arms, and a list of questions for appts with doctors. I learned that j must accept i am not the same energetic person as before. And try to deal with this. I take a nap and rest as soon i feel i have to do that and don't care about what people say or if they undertand it or not.

    Hope this helps.

    Cheers!

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  • Posted

    Hi try not to Dwellon the fact you have lupus I got definitive diagnosis in 2002

    Avoid e numbers eat a balanced diet off whole food you need red meat to keep your vit b12 up I had methotrexate prescribed for 10 years or so if they want you to take this try and get them to give yo one of the newer immune suppressants I also took hydrochloxichloriquine for a time to until it started to affect my eyes .

    Look after yourself and you should be able to lead a near normal if not normal life for a

    Long time to come be positive .

    George

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  • Posted

    Hi

    its a bit of a shock at first I know. 

    If its mild it's great news for you... But the fatigue is a big issue and getting worn out quickly a burden.. Meds help...

    But more things can be checked that cause tiredness ... I've been through them all. I'd get them to check, your V B12 levels,

    thyroid levels and iron.it can all be connected ..some people with lupus are low in these things (I am). I'm on

    low dose of steroids and they make u feel good .. But there are other things you can take.

    im not sure if you are seeing a GP or consultant but you should def see a consultant Doctor in this field.. 

    As as regards to diet, meat in moderation, fish helps your joints and plenty of fruit for energy.. Everything in moderation and try to walk or excercise ...

    you out are not alone , full time long hours jobs didn't work for me but I carried on for a very long time. 

    Unlikely you will need chemotherapy ..I've slight lupus nephritis on immune suppression drugs but have normal kidney function and I'm told that's very good. Diagnosed 20 years ago my advice is to pace yourself!! Don't over do it and rest often.. 

    Hope this helps and you get the balance soon.🙂

     

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  • Posted

    Thank you so much for your responses. It is good to hear from people with experience and get some answers. Nothing you said was overwhelming to me and all of it was helpful. I currently am out of school and work, so I have some time to rest and figure out which meds work best, what diet/exercise regime is best, and what daily routine will be most beneficial to me now that I know I have Lupus.

    I do have one MAJOR HUGE CONCERN:

    The only thing that is really overwhelming to me is the sunlight problem. I do react pretty severly to the sunlight. I get the usual rash, but I also get extremely fatigued (usually when its hot) and then sore muscles... right before a full flare that has me in bed for days. I came from an abusive family, and outside of my terminally ill and financially poor grandparents whom I am currently staying with, I have absolutely NO support. I graduated high school from a homeless shelter, went to college on scholarship, and worked in the summers. I never had a car because I never could afford one, and most certainly cannot now. I walked EVERYWHERE. Then I got too sick to do anything. Now I am getting diagnosed and treated for the first time. Once I get stabilized on medication and relief from symptoms, I plan to go back to school and work (summers). However, because of my desperate financial situation, I will still be having to walk most places, and wait in the bright/hot sun at bus stops for further out destinations. I feel totally stuck. I read in 6 or 8 different places that you should avoid sunlight, especially 10am-4pm.  If the sunlight will cause flares, (it always made me much worse in these past few months), then how will I ever be stable enough to continue school and work? Even if I get stable now, if I want to work or go to school or go ANYWHERE, I will have to walk and wait at bus stops (I have taken buses MILLIONS of times, and buses don't come at predictable times and don't wait, so it's not like I could wait somewhere cool until I saw it coming. Buses have to see you ahead of time to know to stop). My close friends are doing ministry work out of the country and I don't have any other family who could help. Am I literally stuck? Does anyone on here have suggestions? How can I live my life? This is one thing that is REALLY freaking me out. Most people have the resources they need, so if they get Lupus its not a concern.  They can drive most places and wear sunblock and hats during the rare occasion that they have to be in the sun. But there is no way for me to afford a car and insurance. Colleges and jobs and bus systems wont work their schedules around when the sun isnt direct for me to get to and from places. It was about 40 minutes total each way to get to and from the preschool I worked at this past summer, between walking and bus stops in the sunlight. Not to mention playground time with the kids.  How will I ever survive? IS there something I can do? I feel like since Im too poor for a car, and too sensitive to the sun, I will never be able to go to school or work. This scares me. I am intelligent and driven, I want to live my life. Does it have to be like this? Is there anyone who experiences this who has ideas? 

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    • Posted

      *I meant 40 minutes each way in the SUN, plus the time I was on the buses (about 70-80 minutes). So two hours total per direction. It was quite a treck to work - my days were painfully long. I worked 10-hour shifts, walked and waited at bus stops, and spent over an hour actually ON the buses as well. I loved my job, but my pay was too low for the cost of living in the city and my days were brutal because of the commute via walking and public transit. Im sure being in the sun all that time made it a million times worse though.

       

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    • Posted

      Sunlight and fotossensibility is in fact a huge problem. You have to adapt your life style and routines even if you own a car to avoid them. Stress is also a trigger. So sad but true. I do have a car, I do travel 5kms to work and even so I do get rashes :-(

      Only hope to achieve remission so that I can feel "normal" again. I wish the same to you.

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  • Posted

    Hi m highly sunsets it I've to the reumatoligist prescribed a very good sun block witch for years did the trick as my name suggests I worked outside however I am no longer as susceptible to the sun and can be out for a little while with no block on .There was a time when the sun was my worst enemy too

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  • Posted

    Don#t try herbal remedies. I have tried Turmeric Complex but my situation got worse
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