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dandoon_88
09-10-2005, 09:35 AM
I was wondering if anyone can completely recover from lupus? Sometimes I feel that I am okay and that I have no lupus to think about. this is because I'm pretty active and I wonder how I would be without my medicines.
I think I'm in remission (dont know exact definition) because the problems only appear in my bloodwork (eg. increased urine protein, reduced albumin level), they don't affect my physical fitness or health.
Do all lupus patients develop the common symptoms (eg. joint pain, butterfly rash, etc.) at some point in the course of the disease? I remember reading that somewhere.
It was just an idea that occurred to me I thought I'd share it with you all :)
I also want to know if there is an alternative to prednisone? i HATE this drug, it really boosts up my appetite and I can take it no more. What would happen if I stop taking it? 5mg is a low dose anyway, will I continue taking it forever?

SoleSinger
09-10-2005, 11:38 AM
I think that some people can get off of prednisone, and some people wind up taking it forever... I think it just depends... I could be wrong, but, I think I read that somewhere...

A suggestion, about your increased appetite... Maybe drinking more fluids would help? I don't know if you can or do drink milk, but, I find that above anything, a big glass of milk typically subsides some of my hunger... Sometimes not... But, it usually helps me...

Just a thought. :)

ClaireMacl
09-10-2005, 03:17 PM
Hi Dandoon,

Glad to hear you've been well, that's great news!

I've never heard of anyone "recovering" from Lupus unless it was a wrong diagnosis... I've done a ton of reading (lol). But, and this is important, I understand that even though a person has the disease, they can potentially go into complete remission for an untold amount of time. Perhaps you are one of those lucky ones, I hope so!

As for the common symptoms, I think only 80% or so have that symptom. My dad had clearly defined symptoms and diagnosis of lupus for about 7 years before he developed the rash.

I've recently read the book Talking About Lupus by Dr Graham Hughes, who discovered Hughes Syndrome and also founded the first Lupus Specialist clinic in the UK... I'd recommend it to anyone!

I'll have another read about remission, unless you take my advice and buy it ;) I got it off of Ebay at a very good price, just a hint ;)

Hope you stay well for a very long time!!!!

Cx

mviceroy
09-11-2005, 05:04 PM
I asked my doctor a similar question and he stated that Lupus symptoms start to wear off as you get older (I guess because of the decrease in hormones). He also stated that I will always probably be on 5mgs of prednisone because my adrenal glands are not working the way they should and that the 5mgs is the replacement of what the adrenal glands should be producing.

Myrna
09-12-2005, 02:31 PM
I share the same thoughts....my mother has had lupus for 33+ years ....she's had some good years and some bad years. I do believe that patients can go on remission for an undeterminated amount of time, but I also believe that the lupus still lives in their body...it's all about what can cause it to flare. My mother has had lupus all of my life (I'm 33) and I learned a lot about it over the years.
In November 2003 my 15 year old daughter was diagnosed with Lupus. She saw the rheumotologist for the first time in January 2004. At that time he put her on 80mg of prednisone and continued decreasing it on a monthly basis. She showed no signs of the Lupus. By November 2004 he eliminated it completely. It was then that she began to get sick and lose a lot of weight. By April 2005 she was nearly 30 lbs thinner and spent a week in the hospital with a critical flare up. She's doing much better now, but I strongly believe that removing her from the prednisone was a bad decision. We have found a new doctor since.

andyman
09-13-2005, 04:59 AM
Hi!

I can only tellyou what I have gone through. This first got ill 14 years ago but they weren't quite sure it was Lupus. After being on prednisone for a year and then having my spleen taken out to stabilize my hemolytic anemia things progressively got better. Although I had problems off and on but nothing major until 2000. I then had a major flare-up, blood clots etc and was at that time dx's with Lupus. I also had kidney involvement with it. I then worked on my diet and along with meds got things very under control until the past few months. I am now having another big flare-up and am back on 60 mgs. of Prednisone, Placquenil and will be going onto Cellcept as well.

As far as the age thing goes, I have not found that it makes a difference at all. Also, this disease can be a roller-coaster. Like the saying goes, some days you're the windshield and some days your the bug.

People to have different symptoms. I have never had a rash but have very dry eyes and hands. I've also had hemolytic anemia (blood cells get distroyed by the immune system). Pain wise I have not had as much as others until more recently. It's still not terrible and I can function but I am having more pain with this flare-up. Plus, the other oddity is that I am a guy and more often women get this disease.

Anyway, that's my story and I'm sticking to it. I hope it helpls.

Andyman

Saysusie
09-13-2005, 12:12 PM
Hi;
Having been in remission myself since about 1992, I can say that we do not fully recover from the disease. I still have many sysmptoms of Lupus, but I do not use medication to treat or control them (according to my rheumatologist, that is pretty much what remission is!). I do have active Fibromyalgia, active Raynaud's and several other illnesses that I do take medication for. But, as far as Lupus and it's symptoms, my numbers (test results) sometimes indicate a low ANA titer, no protein in the urine and other factors that indicate no or very little lupus activity. But, then there are times when my ANA titer is higher and my lab tests indicate lupus activity and I feel pretty sick - but those incidents are few and far between and do not last for long periods of time. Therefore, I am considered to still have the disease but to be in a form of remission!
Basically, I still take all of the precautions as if I had fully active Lupus and I still suffer from debilitating fatigue (maybe Lupus, maybe Fibromyalgia - who knows?) , I am still very, very sun sensitive, I still get lupus migraines and I still do not eat those foods that could cause a flare, nor do I engage in any activity that might contribute to a flare!
It is hard to say for sure if we completely recover, but I and my rheumatologist think not!! But, as said in other posts, we can be symptom free for extended periods of time!
Peace and Blessings
Saysusie

devotedmom
09-13-2005, 03:45 PM
I also wondered myself if there is anyone who has recovered from lupus? I was diagnosed with lupus when I was 19 years old & I always thought I didnít have it because I didnít have any symptoms back then, but it did appear on my blood work. Then when I had my first son at the age of 27 that was when I had the symptoms of the lupus such as swollenness, joint pains, my anemia problem was getting worse & kidney problems as well. But after going through medication, blood transfusion & chemotherapy I did ok. I eventually slowly got off the medication, the doctor didnít like the idea she wanted to have me on a very low dose for the rest of my life but I didnít agree with that. So the doctor just monitored me every two months to see that everything was doing good but at the same time I started talking nutritional herb foods on my own.

Now I see the doctor every 6 months & every time I go, the doctor tells me that my blood work is really good. The funny thing is that when the doctor reviewed my charts, she notice I have not had symptoms like before, blood work is getting better each time I go, not taking any medication at all & it has been almost 4 years from the chemotherapy, she told me I should be a success story. I had to tell her that the only thing different I was doing is taking nutritional herbs & her response was just keep doing what youíre doing because itís working. Itís been 3 or 4 years since I had a lupus flare up.

I, myself took the risk and stopped the medication of course with monitoring of the doctors. Before I stopped Ė when I was deciding to get off the medication, I told my doctor and let her know I didnít want to continue taking them. This may not be for every body all I know is it did work for me.

devotedmom

andyman
09-14-2005, 05:25 AM
devotedmom:

That's great about your symptoms!

I'd be interested in hearing what herbs you take and in what quantities. Also, what sort of a diet are you on?

Thanks,

Andyman

devotedmom
09-14-2005, 08:57 AM
Hello Andyman

Iíd love to talk to you about the herbs in more details. I noticed you were doing nutritional stuff as well & I would be interested in your information too could we talk by email if you donít mind?

Devotedmom

andyman
09-15-2005, 04:10 AM
Devotedmom:

Absolutely. I would love to talk to you further about this subject.

Andyman

Katalanta
10-21-2005, 06:55 PM
I'd be awfully interested in hearing about the herbal stuff, too. If you don't mind too much, Devotedmom (and Andy!).

lexis214
10-23-2005, 07:11 PM
I noticed that some say certain foods can be bad. My dr. did not mention this to me. Can you let me know which ones we lupies should stay away from and why??

Thanks so much for all this interesting and very important information. There is something new to learn everyday!!!

andyman
10-24-2005, 07:55 PM
There are a number of things written about diet and lupus. One of them is the Lupus Recovery Diet by Jill Harrington. You can look it up on the internet. It costs about $20 to download. It has some very good data in it that's workable.

Andyman