I don't often talk about my health on here because I have a kind of yucky (like that technical term) kind of Lupus that can be kind of scary to people starting out and I never want newer people to think they will end up like me. I am posting 2 threads now because I think they are very important.
I have basically been in a flare, with only a couple of days break here and there, for 3 years. I take so many meds and even with methotrexate we could only get my daily steroids down to 40mg a day and even with that I was only able to have any quality of life because of pain management (which I refused the first year). High powered narcotics and drugs that would knock out a horse make it so I can walk without a cane. Lowering my steroids anymore made my seizures worse so it has been a horrible cycle. Hence the reason I don't discuss much of it here now. Most Lupus patients are not like me and I don't want to freak everyone out. Today is different though. I think I am finally being pulled out of a flare that has lasted more than 3 years constantly and pretty close to that for the 3 previous.
I said in another post I am in the hospital because of over doing it. I messed up my lungs, have an infection, labs are screwed up and couldn't breathe. I went to a different ER Sun and they did some things but said I had to see my doc in the next 2-3 days. I did and he instantly put me in te hospital and on top of antibiotics, breathing treatments and tons of other things he decided to do what is called a "solumedrol IV push" a couple of times a day while I am here. They are used for MS patients but also for some severe Lupus flares. They give me high dose steroids in my IV port slowly.
of course my cough is getting better and I am mending but the big news is that I think I am coming out of my flare all together! Ok, maybe it is just because I am on such a big dose of steroids but I have no joint pain, my eye issue is healing (didn't know it was flaring up again btw), my head feels clear and, although I am very sick physically I my Lupus is feeling better than it has in years!
Cross your fingers for me. I will let you know how this turns out!
Last edited by tgal; 06-16-2013 at 11:28 AM.
Success is not final, failure is not fatal: it is the courage to continue that counts.
Good....I'm so happy for you, we all know how great it feels to finally get a break. I'm also more of a severe lupus patient, and when I go to the hospital they give that to me too, it definitely helps. Recently I've started benlysta treatments, so I'm keeping my fingers crossed as well. I hope you continue to feel better and enjoy every minute of it.
( ( ( h u g s ) ) )
When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.
Mari that's great news. I'm glad you're feeling better. Please ask your doctor to give you something to protect your bones. Hugs, Mari
Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"
That would be awesome, Mari, if you finally came out of this flare! I'm so sorry that it had to get so bad that you were hospitalized, but maybe that's what it took in order to get the "good stuff" and some relief.
Fingers crossed that the joint pain-and it's nasty friends-will have left the building!
I'm glad that they made you feel better when I had to do the pump for 3 days the first time they got my labs looking good, but I reacted really strongly and they made me feel really sick. The other time I did it though was awesome lol
"A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard
Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.
My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit
Mari you always find the silver lining.... :-D
I hate that you are dealing with such awful stuff and had to have all these drugs, but wow - if it "pops" you out of this mega-flare, THAT'S AWESOME!!!! The parts of your body most affected by the Lupus have to be SO happy to have a bit of a break....
Now maybe it's a matter of finding a balance - keeping the Lupus at bay while getting the drugs to a level where the side effects aren't troublesome....
Change is hard, but sometimes it's good!!!! Best of luck, and please keep us updated on how things go. You never know when that info might help somebody, as well! I always file this stuff away, even though I HOPE I will never need it....
Crossing my fingers
You're so brave!
I am sorry your in the hospital. I have had solumedrol several times in the hospital and it has been great. Hope this brings you out of your flare and you stay out for a very long time.
I did the IV push and for me it burned a little at the injection site so ask the nurses to slow it down if you need it but the dr insisted it let me go home early. Yay for the relief!
Lupus (nephritis), Osteopenia, Raynaud's, plaqueneil, cellcept