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Thread: Don't think I can financially afford to have this disease!

  1. #11
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    Thanks for the diet advice. I've been seeing a nutritionist who has given me a lot of the same advice. It's easier to eat well these days, since I am never really hungry.

    Diet plays a huge role in a "healthy" person's life - It's odd that my doctors don't focus on that at all.

    Glad to hear that you're only taking plaquinell. It gives me hope

    I just saw my kidney doctor today, and he said I have the worst kind of lupus - whatever that means!

    I'm going to an acupuncturist tomorrow - I feel so "new age", but I've heard really great things from many people about the results. I'll let everyone know how it goes.

    I just found a string of emails through MR_Jill about someone named Brett going the "natural" route - How would I email Brett to find out how it's going?

    I just can't imagine being on drugs for the rest of my life. Sometimes I really feel like the side effect of the drugs are worse than this crazy disease!

    Is it the plaquinell that is causing problems on my skin and hair? I thought it was all the sunscreen I've been wearing!

    Thanks everyone!
    Monica

  2. #12
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    Forgot to mention to Sheryl - I asked my doctor about the antiphospholipid syndrome and he added that test to my next blood test, so we'll see if I have that too! I'm hoping the tingling is just a pinched nerve or something.

    Monica[/quote]

  3. #13
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    The problems with your skin and hair may be due to your kidney's not processing correctly... When I was first dx'd my albumin level was at 0 when it should be between 3.4 and 5.6.... If you are losing protein it will do a number on your hair and skin!! But, it gets better... It could also be a reason for your hair loss, too... I'm sorry about your Lupus...

    Keep us posted!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  4. #14
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    Default Meds

    I know what you all mean by the number of meds. I work for Express Scripts so have good prescription benefits but I still spend quite a bit every month. Here's my daily list:

    For Lupus:
    Cellcept - total of 2000mg a day
    Plaquenil 200mg - 1 2x daily

    For all the other things wrong with me!
    Bromfenex
    Benicar Hct 20mg
    Doxepin 10mg - 2nightly
    Baclofen 10mg - 2 nightly
    Lyrica 100mg (1 3x daily for seizure (from the lupus)
    Nexium 1x daily
    Gabitril 4mg - 5 daily for seizures
    Flonase
    Synthroid
    Ambien CR 12.5 (headaches from lupus)
    Oxycontin 20mg (currently 2x daily from post-op staph infections from hip surgery)
    Percocet 5/325 - 1 3x daily for same as above
    Estradiol 1mg - menopause
    Calcium
    And a one a day weight smart vitamin.
    Catlady4520

  5. #15
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    Quote Originally Posted by monicakelly1
    Forgot to mention to Sheryl - I asked my doctor about the antiphospholipid syndrome and he added that test to my next blood test, so we'll see if I have that too! I'm hoping the tingling is just a pinched nerve or something.

    Monica
    [/quote]

    I hope you don't have it - but it's better to know than not know, in my opinion. By the way, I'm only on plaquenil too.

    I think it's "just lupus" that makes our hair fall out, not the plaquenil... but if it doesn't stop soon, I'm going to be bald> :roll:

    Keep us posted on how you're doing!

  6. #16
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    I too like others had tremendous hair loss. My Dr hear at UCSF said that they have had good results with cancer patients taking high doses of B -complex. So a few years ago I started taking a super b complex twice a day and my hair came back. I had course hair and now it is fine but it is all mine. Now I guess I don't really know if it was the complex but I'm afraid to stop taking it because I like my hair. Also my mom has reuatoid (sorry about the spelling I can't think of how to spell it) arthritis and she is taking the complex and got her hair back too.

    The cost is cheaper than all the shampoos and conditioners for hair loss you might ask your Dr if you can give it a try.

  7. #17
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    Thanks Teresa! I'll check with my doctor. My hair is wavy, but was always pretty fine, so now I have crazy thin flyaway hair! My mom keep telling me to stop focusing on how I look, but I feel like I'm morphing into someone else. It's weird. I have to stop being so vain. 8) I tried to lift light weights this morning, and almost passed out from this anemia. Oh well - I'll try again next week.

  8. #18
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    Hello -

    Type 4 lupus nephritis is the worst kind of nephritis you can have - I was on twice the dose of Cellcept you are on at my worst (also type 4). Now, I'm down to 1000mg a day. Type 5 nephritis is a whole different ball game and can be better or worse.

    Anyhow, my hair got sooooooo much better after reducing prednisone below 10 mg a day - even better at 5 mg. I'm now off! Except for days I need it for other reasons. MY hair is now the same it was before lupus.

    I'm also on plaquenil, lisinopril (for high bp) - everything else I got off of! So there is hope!

    I've also been doing acupuncture since the beginning, and I think it's really helpful for me. I notice a big difference when I don't go for a while. Yoga also helps with my stress and to focus myself.

    The diet thing did not work for me. I think this disease is too complex for one solution for everyone. Just be careful with any drastic diet changes, as I had some major problems when I tried a similar diet.

    Wishing you wellness,
    Missy

  9. #19
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    Default New To This Forum-Dx w/Lupus 2001

    Hi, My name is Marcie and I have Lupus or maybe I don't. I ask my doctor at every visit if it (lupus) has gone away yet and every time she says "No and it's not going to.". I was dx in Jan 2000 at 40 when I had a complete hyst. My ANA was high and my Gynocologist is the doctor that put it all together. I have always been sick even as a child but I still can't seem to accept this "thing", this "condition" that I can't control even though I now have a "name" for it. I'm presently taking the following meds:

    Synthriod 100mcg
    Effexor 225 mg (for hot flashes since I can't take HRT because of prior blood clots)
    Norco-pain
    Xanax-anxiety
    Elavil-Leg/Body Spasms at night
    Plaquinel
    Prednisone
    Ambien
    Imuran
    Others that I'm sure I have left off.

    I have tried repeatly to stop taking the Prednisone but that is the only thing that will keep the joint pain under control.

    Just when I think I'm getting better the weather changes or I have an especially stressful week and I'm quickly reminded that "it controls me and not the other way around". I am blessed (or not) with my own business. I'm 45 with a wonderful husband (business partner), a 25 yr old daughter, 13 yr old son, and 2 yr old granddaughter. I feel extremely guilty because my daughter also has Lupus and I'm afraid my granddaughter and son have it also. My husband is very understanding but I feel like I have let him down also since I usually have no energy for anything except resting when we aren't working. It's a good thing we work together or we probably wouldn't spend much time together because I'm alway so tired.

    I just keep thinking that I'll be able to manage this "thing called Lupus" but that hasn't happened yet and that really bothers me at times.

    Thanks for providing a place to vent. I'm normally a very private and quiet person and it's hard for me to open up to others.

    Thanks again.

    Yaya

  10. #20
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    Default WELCOME YAYA,

    Hi YaYa,

    First, I want to say welcome. You have found the perfect place to share, we're all about in the same boat. And yes, we wish everyday this would all go away, however; our goal is to make our lives as optimal as we can with what we have......and sister, you have a whole lotta love right here!!! And this is the ABSOLUTE BEST lupus support site on the planet!!

    We're here to listen, encourage, laugh with, cry with....and hold your worries in our hands if even for a short while, so you can catch your breath.

    Hang in there, and hold on. We're all here for each other. So kick off your shoes, and stay a while....we'll make you feel right at home.

    Much love,
    Browneyedgirl

    p.s. For many years I worked for a greek family, and when their grandmother came to visit; you would here loud shots of joy....and they were all screamin' YAYA....and one of my all time favorite movies is the
    Secrets of the YaYa Sisterhood - so you're a rock star, in my book.
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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