Page 1 of 3 123 LastLast
Results 1 to 10 of 23

Thread: Diagnosed Yesteday-So many questions and so nervous

  1. #1
    Join Date
    Jun 2011
    Posts
    9
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default Diagnosed Yesteday-So many questions and so nervous

    So glad to find an active forum like this-

    Quick Background-
    35 YO Male, married with three year old son that just bought a new house in Michigan. I am the primary bread winner, although my wife works full time and provides the family insurance. Since college, I have aches and pains in my shoulders, fingers and chest and frequent migraines-not to mention always tired. Told my doctor I thought it was lupus and he (of course) said it wasn't-even with a positive ANA test.

    This past January, i was talking on the phone and could barely get out a sentence. I just couldn't take a deep breath. Went to the emergency room with a D-Dimer score through the roof. After ensuring I didn't have a clot-sent home with an anxiety diagnosis. Anxiety and trouble breathing was coming and going (with the help of medicine). Went on my own to a rheumy and-of course-felt fine that day. He said I was crazy and but took blood work to be safe.

    Yesterday I get a call that my Double Standard DNA was positive (wouldn't say how high) and gave me the news I was long expecting, but didn't want to hear-probably have lupus.

    Now here is where I need your help based on your expertise.

    Doctor wants to put me on Plaquenil? I told him I feel fine, except for trouble taking deep breaths and that is usually solved with a couple of Motrin. He then said to stay on the motrin as needed and we can revisit in three months. Do you think I should take the Plaquenil to prevent any major damage or just stay on the motrin for now?

    What about adding baby aspirin to diet?

    Speaking of diet-any foods I should add/avoid?


    I fear, being the bread winner, of not being able to support my family. Has anyone been successful in getting some time of life/long term care insurance since being initially diagnosed?

    I currently work a full time job that requires around 15% out of town travel-Have any of you been able to maintain a full time workload after diagnosis? Much I read on Google shows many people being forced to quit their job around 5 years after diagnosis.

    Finally, life expectancy-we want to have another child, is this a mistake?

    I realize no-one has the definitive answers to these questions, but any input you could provide is greatly appreciated.

    Thank you,

    Frank

  2. #2
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    Plaquenil is like our first line of defense. I would say to take that for sure, it will help prevent things from getting worse and can help fight off future organ involvement. I take a baby asprin everyday and I dont think it would hurt to do so if your doctor suggested it. Are they looking into why your having trouble with deep breathing? Sounds like something that could use more looking into. Im a youngin and cant help much with your other questions but other will come along. Oh and welcome =) Im glad you found us.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  3. #3
    Join Date
    Jun 2011
    Posts
    9
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    One other question-supposed to go to Switzerland next month for business-should I cancel? I haven't told work yet.

  4. #4
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Frank, welcome! Rob, Steve and newbie Scott will probably be very happy to have another man in this group.

    I was amazed when I read that your doctor said you were crazy - I really thought they only did that to women LOL. For lupies who have been ill, but undiagnosed for years, hearing that they have lupus is actually a relief. Finally a name for what is going on, and some treatment options.

    Plaquinil is the first line drug for lupus, and usually people stay on it for life. Most people don't have too much trouble with side effects, but you have to get your eyes checked by an opthamologist every 6 months because it can cause deposits on your retina over time. I am starting to have some problems, but it has taken 12 years, and my rheumy has just decreased my dose, not stopped it. When you start plaquinil, you need to be patient. It takes about 3 months to really see results, and I continued to improve for at least a year. I am not a doctor, but in my opinion you should start the plaquinil ASAP. You have been trying to get a diagnosis, and motrin hasn't fixed things for you up to this point. If you are concerned about being able to work, starting treatment would be a top priority, before you have organ damage or CNS involvement.

    My Mom used to sell long term care insurance and she checked to see if I would be eligible after I had been diagnosed. Her company would not insure me. I have been very careful to keep the life insurance policies I already have paid up, and jump at any opportunity to add coverage or get insurance (through work) without medical screening. I think that most life insurance applications ask if you have been turned down by another company, so I haven't even tried to apply because I didn't want that "on my record."

    Baby asprin is something to ask your doctor about, but I take it and I know others on the forum do as well. There are "anti-inflammatory" diets out there, but I think most doctors just advise that you eat a well balanced diet, maintain a healthy weight, do regular low impact exercise, and listen to your body when it is tired. If you get worse after being in the sun or under fluorescent lights, then you should read the "sticky" about sun exposure. Sun is bad news for many of us.

    I'll let someone else tackle the work issue, as I left my job 5 years ago to take care of my daughter, who also has an autoimmune disorder, among other things. I worked 32 hours a week and was wiped out by the end of the day.

    It used to be that the life expectancy for lupus was about 10 years after diagnosis. When I was diagnosed 12 years ago, my doctor told me that if I got through the first 5 years, I would probably have a normal life span. Now the majority of people with lupus live to old age. See this link from the Lupus Foundation for more information: http://www.lupus.org/webmodules/weba...=247&zoneid=60 What has changed that prognosis? PEOPLE TAKING THEIR MEDICATIONS! Is that plaquinil looking better now ;o)?

    We chose to stop having children after our 2nd difficult pregnancy, and because I needed to take medications and didn't want to risk birth defects. I don't know what doctors advise about men taking lupus meds when they are trying to conceive. That would be a good question for your rheumy AND your wife's OB doc. There are no crystal balls for any of us. It seems to me that you are more likely to become disabled than to die young (from lupus). I regret that we didn't have one more child, but it would also have been tough for me if we had. Having another child is a decision that only you and your wife can make. Look at the data on life expectancy and disability on the Lupus Foundation website.

    Best wishes! We look forward to hearing from you and hope that you will stick around to share your experiences, get support, and support others here.
    Last edited by Gizmo; 06-24-2011 at 04:26 PM.

  5. The Following User Says Thank You to Gizmo For This Useful Post:

    Peridot20_Gem (06-24-2011)

  6. #5
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Frank,

    Welcome to our lovely family of WHL and you have all the support going from our member's besides loads of threads to help you with your diagnosis.
    Some doctor's these days just have'nt got no respect, take no notice of the crazy lark as half of we have been paranoid besides let if fly over your head mate.
    I had an high D-dimer like yourself but i had DVT all through my left leg i'm clear now at the moment but i do suggest taking a 75mg sugar coated Asprin daily that's what my rheumo as me on and being sugar coated they don't give you an upset stomach.

    Refering the plaquenil i was on it for 12wks had some side affects which can happen with some people and was advised to take it at night by Linda a member as your sleeping through the effects and i've been back on it over 2wks and so far been ok, yes abit of raised temper and nausea but that does come with some drugs anyway but it's great for the skin and when it's been in your system a good 6mths it does help the joints abit better also...i can't tell you what to do but i would go for the asprin and plaquenil to help your symptoms.

    Try not to get to stressed and worried because Lupus does thrieve on that and can make your symptoms feel abit worse...i always tell others and here's me a manic depressive.lol

    Working issues i'll leave to other member's as i stopped working at 18 and i'm now 42 i had ailments hit me which Lupus causes and never new until diagnosed 3yrs ago and also told i was born with it and inherited it off my parent's, so i think that's answered your question refering children as it's a 50/50 where children are concerned.

    I wish you all the best mate and keep we updated.

    Terry

  7. #6
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by ritzbit View Post
    Plaquenil is like our first line of defense. I would say to take that for sure, it will help prevent things from getting worse and can help fight off future organ involvement. I take a baby asprin everyday and I dont think it would hurt to do so if your doctor suggested it. Are they looking into why your having trouble with deep breathing? Sounds like something that could use more looking into. Im a youngin and cant help much with your other questions but other will come along. Oh and welcome =) Im glad you found us.
    Ritz, you are more experienced with this disease than many. Don't sell your knowledge short, especially when it comes to lung problems.

  8. The Following 2 Users Say Thank You to Gizmo For This Useful Post:

    Nonna (06-26-2011), ritzbit (06-25-2011)

  9. #7
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by tazdmb View Post
    One other question-supposed to go to Switzerland next month for business-should I cancel? I haven't told work yet.

    How sick are you? Do you think that going on the trip will make you worse or that you will have problems over there and not be able to get help? Your doctor is really the person to ask about this. If you do go, make sure you take precautions on the airplane for blood clots in your legs - go buy some support hose or surgical stockings, if your doctor gives the OK this is the time you will really need to take asprin, do leg exercises in your seat and get up at least every 2 hours. Maybe your doctor will give you some prednisone to help you through the trip - it would be worth calling or faxing him to see what he advises.

    Work is a tricky thing. If I were in your position, I would wait a little longer for all the testing and for the doctor to make a diagnosis. Then talk to the doctor about what your job entails, and if there is anything at work that you are having trouble doing because of your symptoms. See if he will write a letter stating what your limitations are and what kinds of accommodations you need. If it's a large company, they have to work with your disabilities. Be proactive if you think your job performance is suffering, before you get any kind of warnings.

  10. The Following 2 Users Say Thank You to Gizmo For This Useful Post:

    Nonna (06-26-2011), tgal (06-25-2011)

  11. #8
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    hi frank, welcome to our family.

    if motrin and plaquenil do not counteract, why not take both.
    if they do counter react, then it is your judgement call.
    plaquenil takes time to accumulate in your body. it can take months before the effect is realised.

    asprin can help. my rhuemy suggests unless you have extra high blood pressure, the plaquenil should do enough. i take blood pressure medication.
    other rhuemy's differ. a few on this site are taking asprin at there doctors advice.

    there are no foods i know off that are specifically bad for lupus.
    most of us eat healthy, because we need to preserve what we have.
    with fatigue and swollen joints, cooking is difficult for some.
    eating healthy makes sence.

    life expendance used to be a problem. with modern drugs. life expendancy is now no nonger an issue.
    if you stop taking the drugs then organ damage will become an issue, and is the usual coarse of death.
    i have been diagnosed for about 3 years.
    when i was first diagnosed i had organ involvement. (confirmed heart, kidneys and liver. suspected lungs, ears and eyes)
    i have always done exactly what my rhuemy told me, and now have my lupus at a stable level. (we are starting to reduce my medication, because it is being controlled so well)
    i have other health issues that keep me out of work though.

    travel is a personal thing. many of us still enjoy travel.
    some take overseas trips and enjoy as normal a life as possible.
    others of us are fatiqued too much to be able to travel.
    listen to your body. if you are well enough, then why not.

    the more you read, the more you will realise, lupus treats everyone as inderviduals.
    we all react slightly different to the desease and the medications.

    we have people here who are house bound by this desease.
    there is one here (rob), who is training to be a drag car driver.
    the sooner you control this desease, the better chances you have of not having lupus stop you from fullfilling your dreams.

    once again welcome to our family.

  12. The Following 4 Users Say Thank You to steve.b For This Useful Post:

    Gizmo (06-25-2011), lovedbyHim (06-25-2011), Nonna (06-26-2011), tgal (06-25-2011)

  13. #9
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Hi and welcome to the WHL family! You have been given some wonderful advice (especially about the plaquenil) by those before me. The one thing that I want to touch on again is the "what can I do" part of your questions. The answer to that is "whatever you feel like". If you are not having too many issues at the moment then do what you would have done without this disease. If, on the other hand, your are having a lot of symptoms then you need to begin adjusting things until you get the symptoms under control. This disease is as individual as the people it touches. Hopefully you will find that some of the people here have information that is helpful to you on this new journey.

    Make yourself at home and , once again, welcome to the WHL family!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  14. #10
    Join Date
    May 2011
    Location
    Pennsylvania, USA
    Posts
    879
    Thanks
    409
    Thanked 270 Times in 194 Posts

    Default

    Hi Frank I have been diagnosed for 5+ yrs now. I live alone and pay for all the bills. I work full-time as a mobile psychiatric rehabilitation specialist. I am on a lot of meds to accomplish this(smile). Plaquinil has been a gift to me and I have had no side affects. I have been on it since first diagnosed. I felt much better in a week once put on it.

    I've seen people with mild lupus and remissions and I've watched a girl fight for her life. Stress and UV sends me into a flair & so I try to avoid it. Imagine avoiding stress in my work(smile)?

    Oh...I forgot to welcome you to this great group of folks.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •