Is this a death sentence ??

Hi i'm 38 happily married mother with 3 young children, early last year i was diagnosed with SLE (Lupus) i have been on Plaquenil since then which seems to be helping. The thing is that i feel that i never really let it sink in that i have this illness until now. In the past few weeks i have heard of 4 people who had Lupus that have died (via the news and in a couple of magazine and today whilst i was having bloods done the lady told me of her sister who died 15 yrs ago because her organs failed who had Lupus)

I feel very depressed now knowing that this will soon happen to me....

All i what out of life is to see my kids grow up and grow old with my husband but sadly now all i seem to see is a dark cloud when it comes to my future.

What is long term out look....can people grow old living with Lupus ??

[karajo]

I can understand your concern, but statistically, the likelihood of dyeing is not very high.  There was a time when that was true, but the now have medicine that extends the life and quality of life of lupus patients.  Even if your organs become involoved, The medical field has so far advanced now compared to how it used to be.

I'm glad you are feeing better.  The best thing you can do for yourself and your wonderful family is to have a positive outlook.  Enjoy them and let them enjoy you.  When I have a bad day or two, I tell myself it is just a day.  Tommorrow will be better.  

Praying for you, Kara

The Lord bless you and keep you.  May the Lord make His face to shine upon you and give you peace.

[Lauren38]

I am also 38 and have had Lupus for years.  I have kept it pretty mild since 2002.  Everyone is different and the majority of people don't have severe Lupus.  I found something that reduced my symptoms by about 70%.  It may help you too.  I am not selling anything.  I use all natural progesterone cream that is over the counter.  I swear it is the reason I can still practice as a chiropractor today.  I found out I had Lupus after my father was diagnosed with terminal cancer when I was almost done with chiropractic school.  My symptoms were mild before that and I didn't think I had a disease.  The stress brought it out.  Someone recommended the progesterone and I have been using it ever since.  Before the progesterone, I was on Plaquinil for about 5 months which didn't seem to do anything.  After 3 months on the progesterone, I felt much better.  If you feel like your symptoms are worse around your period, then it is pretty likely the progesterone will help you.  I did research on cancer risks and found that in the topical cream at low doses, there is no risk.  The research stated that it is Progestin, not progesterone that gives the risk.  The side effects are positive.  Dr. Lee, an MD that wrote a book about menaupause and progesterone states that it increases bone density.  I like that side effect!  Dr. Lee also states that certain brands are better than others.  I recently changed brands to a brand that I like in other products and I am now having more symptoms.  I am going to go back to my old brand which is "Life-Flo Natural Progesterone Cream"  I get it at LuckyVitamin.com for much less than my local natural food store.  I use it on days 15-26 of my monthly cycle.  Day one is the first day of your period.  Apply it 2 x per day from day 15-26 each month.  You have to be very regular with it!!!!!  Mark your callendar, planner, set alarm on your cell phone, etc.  I once tried to go off it in 2004 because my stupid Rhumatologist told me to stop it.  I was a mess again!  Then I started bleeding like it was a very heavy period for 10 days.  It is changing your hormones.  You have to be regular with it.  I wouldn't ever stop again.  It improves how I feel so much.  I feel like I should have been sharing this with more people all these years.  That is why I am taking the time to help you.  I also want you to have some hope, be able to live your life, and watch your kids grow up and be able to do things with them.  Give the progesterone 3 months to take full effect.  Don't take birth control with this without talking to a doctor.  I was told to go off birth control because it could have been one of the causes of the Lupus, or made it worse.  Let me know if you have any questions.

Lauren38

[karajo]

Hi Lauren,

I found this very interesting.  I actually have some of the cream in my cabinet.  I am not real consistant w/ something like that and I have no idea when my cycle is.  I don't have a uterus, but I still have ovaries.  But I have found the symptoms to be somewhat cyclic.

Thanks Lauren for sharing the things that work for you.  That's the beauty of this wonderful web site.  People w/ these illnesses sharing what works or doesn't work for them.  Personally Plaquinel has helped me tremendously.  But I was extremely sick before Plaquinel.  It has helped me function.

God bless you, Kara

[Lauren38]

Kara,

Dr, Lee, who wrote the book, What Your Doctor Won't Tell You About Menopause" recommends taking the progesterone for the first 10 days of every month when you don't actually have a cycle.  He recommends certain brands to be of better quality.  I'm not sure the one I used for years is on his list.  I had to get a less expensive brand due to financial difficulties.  However, the one I mentioned before worked well for me for years.  I only changed recently because I wanted to find one that was less stickey.  The "Now" brand was much less stickey, but I'm not sure if it works as well as the "Life-Flo" brand.  It may be a coincidence and my Lupus would have flaired up for some reason anyway.  

I was taking my lack of symptoms for granted.  I had been having a little more alcohol recently and ran out of glucosamine and didn't take any for a while.  I wonder if that may have been the cause.  I remember reading about alcohol being bad with Plaquinel, but I havn't taken it for years.  I'm sure it is not good for anyone with Lupus anyway.  I cut back from about 8 drinks per week to 4.  Do you think the alcohol could have something to do with my recent new symptoms and flair-ups?  I don't currently take any prescription medication.  I only take about 3 Alive pills per week.  

Are you the leader or manager of this group?  It seemed like you are since your name was on the welcome part and you seem to respond to many of the questions.  I hope you don't mind me asking you a few questions directly.  Should I have asked the alcohol question on the main forum?
Lauren

[TrudieC]

We welcome these kind of questions on the forum so we can all learn from them.  I do drink about the same as you (was drinking more) and not sure if it is just the Plaquenil that has helped to improve or the reduction in my alcohol intake.  I sure do enjoy a glass of red wine to help me relax.

[nickie68]

I have mixed connective tissue disease,    lupus sle, raynaud syndrome, sjogren syndrome, polymyositis, scleroderma... I am on methotrexate and plaquenil among other drugs   and I am 70 years old   dont worry too much yet lass.    God Bless.

[txcatwoman]

I recently found this site and was interested in your letter. They tell me I may have Lupus, but so far my symptoms seem to be confined to the skin, and was interested about the progeterone cream. They have me on quinine, and it seems to controling the inflamation (inflammation) somewhat. I don't like to take meds if I can take something without all the bad side effects,  

[Lauren38]

Hello,

I have systemic Lupus that only effects my skin a little bit.  The progesterone mostly helps with the joint pain, fatigue, muscle aches, mouth sores, and night sweats.  I still get intermittant redness on my nose and cheeks and Reynauds Syndrome in my hands and feet which is the drastic temperature and color change from icey cold and white to puffy and red.  The Progesterone didn't seem to change that much.  So, I really don't know if it will help you.  If you take it, you have to be very regular about taking it and it takes a few months to take effect.  If you are pre-menopausal, are your symptoms worse around your period?  If not, I wouldn't recommend using the progesterone.
Take care,
Lauren

[laurabed]

Dnt worry as long as u take ur medication u will be fine. My mum has had it for years and she takes around 20 tablets a day, for sle, thyroid problems, rynards and a few more. The main thing is u take ur meds, have rest if u feel tired and not to worry.

[aussie mum]

Thank-you all for your post....