Please Help

[Karin1]

Hi, I'm VERY new here. I've been sick for about 8 years, and am desperate for some understanding. I've recently been diagnosed with ANA-Negative SLE. I just this week started 100mg of Prednisone, and a medication called Plaquenil. I've had SEVERE fatigue over the years, terrible arthritis symptoms, horrible body pain, painful discoid rashes, ulcers and sores from the sun, kidney disease, and most recently lung and heart involvement, and a gastrointestinal bleed. In my research about this disease, I've learned that the medications I'm on will help with the symptoms, however I'm not finding alot to do to help myself, except to avoid sun exposure. (depressing considering the summer months approaching). In the last 2 days of my 5 day course so far of prednisone, I'm finally finding an energy that I've not felt in a very long time. I know Prednisone is very bad for you, and I won't be on this high of a dose for very long. I really need to hear from anyone that knows of what one can do to help themselves go into remission, some sort of hope of feeling better.

[lupy lulu]

Hi Karin,

First of all i would like to welcome you to the site.

So sorry that you have had such a dreadful time .. we can certainly all relate to that as Lupus is such a difficult desiease to diagnose many of us unfortunatly have to battle on for years having to convince the medical team of our symptoms. (Not fair is it ?)
Anyway .. you have got one of the biggest battles over , now you need to get feeling well again.

100mg of Pred is some dose but once your Lupus activity calms down they will lower it down.
The plaquinel should help a little with the fatigue and joint pain but it can take 3 to 6 months to feel any benifit.

As for helping yourself to go into remission....well, unfortunatly there is no quick fix, all i can advise you to do is listen to your body and rest when it tells you, you may not belive it right now but you will start to feel human again now that they are treating you ..there will always be the bad days. .thats just something that we have to accept but eventually the good days will take over.

We are all here for you , take care and keep intouch

Love Lucyx

[Shelleyshells]

Hi Karin,

Welcome to the site! I am so sorry that you are going through this time in your life that is topsy-turvy. But, I hope that it's a relief to you to find this site. It is full of wonderful, loving, supportive people that know and understand! That was a relief to me. I could write about some strange symptom....and other people had it too and could relate! Woo hoo! I wasn't going crazy!

Plaquenil does take time...generally 6-8 weeks. Whew! You are on such a high dose of Prednisone! I hope that they can lower it soon and still have you feeling okay.

I certainly don't have all the answers...but, I will lend a listening ear and a caring heart!

Hugs!
Shelley

[lazylegs]

There is no magic bullet to get you into remission. Like Lucy said you have to learn to listen to your body. In time you will be able to tell the difference between being tired and lupus fatigue. Resting is one of the most important things. That was the hardest thing for me to learn and I still blow it after 18 years. Fight the urge to do just one more thing. You will defeat the purpose of the medications if you are continually over doing.

Another key is to learn to say "no". It doesn't matter if you are speaking to family, the PTA, or your best friend. Your health comes first. Don't do something just because it is expected, if you are not up to it. When I say yes I also add the disclaimer that it depends on how I am feeling on the actual day of the event.

Eating healthy is another thing. Vitamins can help, but there are some elements that are missing that exist in the natural foods. Since you are on such a high dose of prednisone you will probably start gaining weight before you can completely taper off of it. That is even more depressing. However if you eat nutritionally it won't be as bad. Remember to drink plenty of fluids. When you don't have enough fluids it increases your exhausion level. Plus your meds might do some nasty things to your body.

Stay up on your meds. Be careful not to miss doses. It is amazing how bad you can feel by missing just a few doses.

If symptom worsens or a new one develops get in touch with the doctor. It may be nothing. However, it could be something that could be nipped in the bud if taken care of right away. Having a good relationship with your doctor and his staff is important. I rarely call the office so when I do they know it is important and squeeze me in.

I hope the medications get you stabilzed soon.

Take care,
Lazyleg

[Karin1]

Shelley, Lucy, and LazyLeg,

Thank you so much for your replies. I do have 'some' relief in Finally knowing what it is I have. Over the years of not knowing, yet knowing in your own mind that something is desperately wrong, I was expecting to be told one day I was dying of some terminal cancer feeling as sick as I have. You're right, finding this site has been a god send, and reading as much as I can and finally finding those that understand and can relate. I'm now on pins and needles waiting for my biopsy results for the reasons why my stomach would be bleeding. (Monday is the day), although I suspect it is primarily from having to take so many anti-inflamitories over the years to cope with the pain of Lupus to get through the work day.
Learning to say "no" is hard, as guilt over-rides when people count on you, and when you have to constantly tell your children that you 'just don't feel well enough". Talking with my two girls, they now have some understanding as to why their mom has been so ill.
Thank you again for responding with such overwhelming understanding.
Karin

[zara]

Hi Karin and welcome!

I'm glad that your doctor has you on the right path now after being undiagnosed and improperly treated for so many years. You are on a high dose of pred and I know for me it makes my emotions run amuk. Getting a diagnosis and emotionally processing all of this must be hard for you right now, especially on that dosage. I just want to give you a big hug and let you know we are here for you.

Best of luck and get well soon.

[Shelleyshells]

Karin,
I was just diagnosed with stomach ulcers. The biopsies came back fine. The ulcers were caused by the anti-inflammatories. Now, I have to be off of them for at least 3 months. Boy, oh boy, I didn't realize how much they helped until I stopped taking them. Now I have to take narcotics that don't affect your stomach, but they don't help with the inflammation either, just the pain.

If it's not one thing, it's another.

Good luck and prayers!

Shelley

[Karin1]

Hi all, News from my Interist, and yes....relieved the bleeding in my stomach is just ulcers. "just" hehe, seems funny to say that, but when you're expecting more bad news, Ulcers I can deal with and try to heal up. Still feeling on the edge of despair, and crying, but I see from the posts posted here that it could be the prednisone making me such a mess eh.
Thankyou again for all your support.
Karin

[lilikeke]

hi Karin,
Welcome to the site. I think you'll find it very helpful and supportive. It's great to be able to talk to others who know exactly how u feel and what you've been through huh? I know exactly how you feel, having Lupus is something you just don't expect to happen, I never even heard of it until they started testing me for it. i guess you could say I'm one of the lucky ones, my dx came early, just within a few months of me getting sick. But I've learned and accepted the fact theres really nothing special u can do to go into remission. just take ur meds regularly, rest often and dont overdo it, I've made that mistake a couple times and paid for it. But I've talked to people and my dr. also has told me that there are people who live long and happy lives with lupus. I am determined to be one of those people. We all can be. But I just wanted to also say that u can't let the disease get u down, keep reminding yourself of all the good things in your life and everything will be ok.

[Karin1]

Yes, I'm very relieved to have found this site, and to be able to read everything that everyone has to say about this disease, it certainly is amazing to read things that you yourself go through, and to know you aren't crazy or that these things aren't just in your head. Rest is going to be a big one I know, and very difficult for myself to achieve. I work full - time being a single parent of two teenage girls, and no insurance for when I'm ill and missing work. Which in turn means higher stress levels with the possibility of loosing our home if I don't work. So it is and will continue to be a constant battle. I'm really very frightened with the summer season approaching, and I'm still ill and far from being in any form of remission. With my also having the discoid lupus as well as the SLE, I am looking foward to all those sores healing up and going away, which they are doing nicely on the prednisone, but do any of you actually get them in your ears as well? I get them on my scalp. my body, nasal and oral, and now in my ears too. arg. Also looking foward to my hair growing back in the spots that it falls out from the sores. My arthritis pain is definately improved on the prednisone, and can walk standing straight again. My kidneys have stopped bleeding, not sure about the protein loss, but it's nice to not have that daily renal pain. Pluerisy has cleared up as well. However I'm looking forward to getting on a lower dose of prednisone because I'm sure thats why I'm crying so much. My internist said I"ll go from the 100mg of prednisone down to about 20 mg until I stabalize. That feeling of going to bed each night in so much pain and feeling so ill, and wishing I wouldn't wake up the following morning is also fading. Nice to have some hope of feeling better, and not 'wondering' for years and years whats wrong with me.
My children also now have the knowledge that I wasn't not "interested" in their activities, that I am ill, and WILL feel better eventually and WILL have the energy to take part in their activities. That in itself means the world to me that they have that understanding. I'm sure once I get through this phase, that I too will have the courage or the confidence to say I'm commited to living a normal happy life, for now I'm just trying to get through each day. Good to know it's possible though, thankyou:-)
Be well all and have a good day!!

[lildaddysgirl82]

<div class='quotetop'>QUOTE(Karin1 @ May 27 2006, 01:41 PM) Quoted post</div><div class='quotemain'>
Hi, I'm VERY new here. I've been sick for about 8 years, and am desperate for some understanding. I've recently been diagnosed with ANA-Negative SLE. I just this week started 100mg of Prednisone, and a medication called Plaquenil. I've had SEVERE fatigue over the years, terrible arthritis symptoms, horrible body pain, painful discoid rashes, ulcers and sores from the sun, kidney disease, and most recently lung and heart involvement, and a gastrointestinal bleed. In my research about this disease, I've learned that the medications I'm on will help with the symptoms, however I'm not finding alot to do to help myself, except to avoid sun exposure. (depressing considering the summer months approaching). In the last 2 days of my 5 day course so far of prednisone, I'm finally finding an energy that I've not felt in a very long time. I know Prednisone is very bad for you, and I won't be on this high of a dose for very long. I really need to hear from anyone that knows of what one can do to help themselves go into remission, some sort of hope of feeling better.
[/b][/quote]


Hello, Im 14 and I have been diagnosed with lupus just this past November. i am very scared too. I take 40mg of Prednisone everyday, 1 and 1/2 Plaquenil everyday, I take some A word medicine and a bunch of other stuff. I get very tired and I could sleep for hours at a day if I wanted to. I get body pains in my joints and in my shoulders all the time. Well I hope you enjoy my story.