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View Full Version : What are the chances of Remission?



kkelly
11-10-2006, 07:33 PM
Does anyone know what percentage of the lupus population actually achieve a long term remission? I am just really curious if its something that is realistic to hope for. Or is it very rare? I have read a couple of posts from people who had 5+ years of remission. Wow - but also scary that it comes raging back at any time. I woke up on tuesday and felt normal - completely normal for the whole day!! I have had maybe three days like that in three years. It really whets the appetite for remission - you really do forget what it feels like to feel normal and energetic. I am thankful that it can happen.
Remission thoughts?

tanyaw
11-11-2006, 03:13 AM
My kids physician told me that her best friend has lupus and has had one flare in 10 years!!!!And one of my friends told me that her friend has had one flare in 5 years....I had hope that would be me but I just found out this morning that I need a kidney biopsy. I have been feeling great and was just smacked on my butt. I am on total meds though right now as I was just diagnosed in August but I had this great hope that I would be like many people that I have heard about and live normally (I am a total downer at the moment)....My sister has a woman in her building that has been living with lupus for 40 years and she is 80! So there is hope. Keep the faith and maybe you will be like that....

KayCee31614
11-11-2006, 06:19 AM
Hi. I have had SLE the doctor believes since I was 7 years old. I am 47 now. The longest remission that I have been in is like 5 years. I guess remissions come and go.

Hugs,
Kathleen

kkelly
11-12-2006, 07:24 PM
Thanks for the responses on remission......all good to hear.
I think I reacted just like Tanyaw with the initial diagnosis (3 1/2 years ago). (the sailing right through things is so familiar to me) I thought OK if I have to have Lupus it will be mild - no doubt about it. I have since realized that its not that simple. I went through a big denial then big grieving/depression. Now I am fine mentally - actually good. Am experiencing some of the benefits of surviving illness/ gratitude - living life to the fullest etc. I really feel strong mentally and spiritually now. I took an anti depressant for about 8 months when I was having trouble coping, it helped when I needed it but was glad to get off of it.

Re: Tanyaw's kidney biopsy. I was supposed to have one as well b/c of high protein in the urine. I couldn't b/c of low platelets (lupus in the blood). My kidney problem lasted about six months - I saw a nephrologist and then it cleared. I still have the joint and fatigue issues but the kidneys are still good. The odd time there is a bit more protein in my urine but not enough to worry about. Anyhow, I freaked too - partly because I thought "this is it, I have moved into organ involvement" but it is not necessarily the case. Also, as Marycain pointed out the meds have come a long way lately for treatment of this specific issue.

Quick summary of my recent treatments: Rituxan (full course) in august 06, I have been doing UVA-1 light therapy - as recommended by a US lupus patient Anthony DeBartolo. I think it really helps me for fatigue especially. I have bought a unit for my home. I have only been doing it for 2-3 months and they say it is usually 8 months for cumulative benefits.
Haven't changed my diet - try to eat low fat but that doesn't end up happening most of the time. Seem to feel better when I don't overeat.
I take vit c, 1000-2000mg daily, calcium, or cal-mag (w/magnesium if my muscles are espcially sore) Vitamin B12 1000mg (under the tongue is better for absorption), evening primrose oil 2 - 4 caps a day. An adrenal gland supplement (Kama) and sometimes Biotin for my thin, dull hair.
I take Motrin extra strength for most pain and I also like Tylenol Blue (aches and strains formula) - maybe only avail in canada but is easier on the kidneys than ibuprofen.

Oh - this post is so long. I hope I haven't bored everyone to tears. Just thought I would share what seems to be working for me lately. I had another very good day - almost like the tuesday. Could remission be around the corner??
Happy Sunday everyone.
karen

Saysusie
11-14-2006, 04:04 PM
Hi Karen;
Hopefully, remission is not far away for you. As you know, remission (like Lupus) is different for each of us and we cannot predict when or if we will acheive it. If we do achieve remission, we cannot predict how long it will last!
The best that we can do is to take our meds, follow our doctor's instructions, eat and live well and listen to our bodies.
I am glad that your regimine is working for you and I do hope that you are able to achieve some form of remission :lol:

Peace and Blessings
Saysusie

GlassHalfFull
11-17-2006, 05:30 PM
When I was diagnosed, my doctor referred to my Lupus as "now active" -- meaning, I assume a "flare."

Since Lupus is "diagnosed" based on how we present as well as blood tests and varies patient to patient -- does the definition of remission vary as well?

Betty
01-20-2007, 04:16 PM
My initial flare lasted two years and was followed by 8 years of remission. I'm a few months into another flare and I just have to believe I'm eventually going to go back into remission.

Sometimes I have a few hours or a few days where I just feel great and I think "Yes! Remission!" But then I end up in the hospital a few days later. Its a total rollercoaster.

Keep your optomism! Even though its heartbreaking to be disappointed everyday I don't go into remission, its still possible.

I don't know. Maybe I'm still in denial but I'd rather focus my energy on thinking about getting well, than how sick I am now.