View Full Version : Someone please tell me theres hope.
01-22-2010, 07:17 PM
Im getting really worried that i will never feel decent again. Since SLE and Prednisone and everything that goes with it, ive hardly seen my mates, and havent had a proper relationship with anybody. I still see my girlfriend every day but all we can ever do is couch it, and 90% of that time im depressed. Are there ways of getting off Prednisone, and are there ways of going into a long term remission or feeling 'not too affected' by the overall of things. I was once the guy who never shut up but in a good fun way, and now im always fatigue, depressed, and wanting to do nothing more then sitting in bed. I know it sounds like a long shot but for hells sake im 18 years old and my life hasnt begun yet. And does anyone else have that 24/7 feeling of unawareness?
01-22-2010, 08:01 PM
Welcome to WHL. I'm sorry that you're having a rough time, but you've come to the right place. I haven't had any experience with prednisone, since I can't take steroids, but I'm sure that someone else will come along soon. There are other drugs that can be used for Lupus. You and your doc may need to work on figuring out what works best for you.
I'm sure that Rob will be around soon to welcome you and give you the guys' perspective. He's awesome.
Meanwhile, fell free to check out any threads that interest you, especially the stickys. Learn as much as you can, then feel free to ask us questions. We'll be here for you.
01-23-2010, 11:34 AM
How many mg of Prednisone are you taking? Are you taking any other meds, like Plaquenil, NSAIDs?
Yes, it is possible to reduce your dosage of Prednisone and some have even been able to get off of Prednisone entirely. It depends upon your symptoms and their severity. Often, doctors will prescribe a steroid-sparing drug (like Methotrexate) to help manage your symptoms while reducing your Prednisone dosage.
It is also possible to manage your disease to a point where you can feel relatively normal. However, this requires lifestyle changes, strict adherence to your treatment regime, and taking precautions to avoid flare ups.
The fatigue and "brain fog" are symptoms that almost all of us deal with on a daily basis. We have tried to find ways to work around these issues. It is important that you get enough rest so that you do not aggravate your fatigue, but it is also equally important that you engage in a regular exercise program to also help to combat the fatigue (as well as help your body to help itself). You must avoid too much exposure to UV rays, you must eat a healthy diet, avoid stress (as much as possible), and be vigilant about your health care.
Depression is a symptom of the disease also, so it is not all you. I always advocate that it is just as important for us to care for our emotional health as it is for us to care for our physical health. One cannot heal without the other healing!! You will find that everyone here understands what you are going through and is more than willing to help you through the rough times that you will encounter with this disease. Also, it might be helpful for you to consider talking to someone who is able to help you work through your emotions.
We are here to help you as much as we can.
Peace and Blessings
01-24-2010, 03:39 AM
THERE IS HOPE. I was diagnosed at 17 and I felt the same way you do right now. I felt like I would never find a way to feel "normal". I found a way! It took a few years and many tears, but I found it and you can too. I am by no way "cured", I still take meds everyday and have active symptoms but no where near the pain I used to have. Keep fighting my friend, hope is out there for you. I found my peace with this disease, I hope that you can too. I have been off disability(put on at 19) and working for almost 5 years now. It can get better! I haven't found the big R but I found "medically controlled" years ago and couldn't be happier. You can find a way off Pred, I was on 60 mgs a day at one point. Just try to focus on yourself and your health but most of all...Be Positive. I found that my outlook on my disease and my life was a HUGE part of my finding a type of peace with my disease. Good luck!
01-24-2010, 07:06 AM
You have your good days and bad days and havew to find a way to deal with both. None of us asked for these dieases and hope there will be a cure. If you are having problems with the meds write down all of your concerns and discuss it with the doctor on your next visit. And stay in tune with your body and how it is dealing with this and depreassion is a real concern and something i think we all deal with from time to time. Everyone is hear to listen and help give some advice and you are not alone. I have been on prednisone for 831 days at different mgs and this i have no problem with and i also take plaquinel and have taken immuran which i was taken off because my body did not react well with it and now i am on 20mgs of methotrexate which scares the hell out of me to take but it is finally starting to make my joints hurt less. God gives us the strength to get through it and learn to live with it. I know you are young and i was 58 till i was diagnosised and i do not know if age is a factor or not but remember we are hear for you. Love and prayers Bonita
01-25-2010, 04:49 PM
There is always hope, although a lot of the time it is hard to find out where it is hiding. I was diagnosed at 3 and made it to 18. I don't have any meds to take for it which is killer over half the time, but I guess I never really had a social life. I'm sure your girlfriend understands, and I'll bet that you can make a few friends (if not many) away from this site. I just got back from a trip and while there, I made 3 friends who knew what Lupus was as they had other friends who had it. I hope that you can find a way to get some of your activness back.
01-26-2010, 06:27 PM
there is hope.
There are some new meds that might become available this year, so let's keep our fingers crossed. There is a lot of hope associated with these new options, i hope it is all good.
It is devastating when something jumps up and changes our lives, it is especially unsettling when it happens to someone as young as you. Your life might change, but it is not over. What was normal will probably not be anymore, but you can define a new normal. Be kind to yourself, you did nothing to deserve this.
Try to relax, get plenty of rest. I know you get tired of lying in the bed, we all do....it has become a part of my new normal...
Whenever i feel like depression is kicking in, i try to do something especially nice for myself....sometimes it is as simple as treating myself to a fancy cup of coffee, but i know that i deserve nice things...i have to remind myself of that.
You will be ok....you have a great girlfriend, and you have us.
01-26-2010, 09:18 PM
Its true there are some new meds on the way, im just hoping nothing goes wrong in more recent trials and things dont take alot longer then we all hope. But that is always a good chance because it is so tough to create the right drug, look at it....SLE has been around for a long time..but the drug alot of us take is Prednisone....its almost a joke that patients of an old disease like SLE take Prednisone to help!. A drug that CAN mess you up in many ways and has certainly messed me up haha.
01-29-2010, 10:28 AM
Sorry you are so young to be plagued by this illness. Never have taken prednisone. My father has though for years. If he had side effects, I never heard about them. Hopefully, someone here on this website can help you.